The Agewyz Podcast: Recent Episodes
Jana Panarites
Author and caregiver Jana Panarites engages with unsung heroes — people caring for family members, friends and relatives amid the demands of their own lives — plus professionals in the field of aging and people using media to creatively address major health issues and challenge widespread assumptions about aging. Laugh, cry, share and know you're not alone. Check out our TRANSCRIPTS: https://agewyz.com/shop
The Coronavirus pandemic has forced many residential care facilities to go on lockdown and implement “no visitor” policies. As a result, family members with loved ones in care facilities are feeling a heightened sense of “ambiguous loss”—a term coined by pioneering educator and researcher Dr. Pauline Boss to describe a form of never-ending grief. Common in caregivers of family members with Alzheimer's and other forms of dementia, this feeling of grief arises because the person with dementia is “there but not there.” Another form of ambiguous loss was noted by Dr. Boss in the early 1970s, when she interviewed family members of pilots who were missing in action during the Vietnam War. These family members were unable to “let go” of their loved ones because they did not know whether the pilot was dead or alive. Dr. Boss elaborates on both forms of ambiguous loss and tells us how she has experienced it in her own life. She offers suggestions for how to lower stress levels and increase our tolerance for ambiguity, for caregivers and non-caregivers alike who are now confronting new and confusing relationships, ruptured by dementia and social distancing. Note: this episode originally aired on May 30, 2019.
To purchase a transcript of this episode please click here: Episode #171
Explore the work of Dr. Pauline Boss: Ambiguous Loss
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Music: "Arashi" by Kakurenbo | CC BY NC | Free Music Archive
Like many adult children, psychologist Nancy Picard is determined to prevent her aging parents from contracting Covid-19. But Nancy and her parents live in separate states. So she's in daily communication with them, and has wired up their house with cameras placed at strategic locations - at foot level, to give her parents some privacy. A returned Peace Corps volunteer who has supported people from age four to 94 as a clinician and researcher, Nancy also focuses on supporting people's needs for reminders through her health care startup, MemoryBeach. As a psychologist and as a daughter who has cared for her elderly parents, Nancy understand the stresses of the moment and how everyday can feel incredibly long. She's here to offer comfort and advice to caregivers, for surviving as individuals with their own needs, and as sons and daughters tasked with filling the needs of family members and friends.
To purchase a transcript of this episode please visit this page: Transcripts.
Explore Nancy's startup: MemoryBeach
Learn more about Life Stories for the Ages: Capture a Story. Connect the Generations.
Renowned flutist Eugenia Zukerman has performed in concerts and recitals all over the world. She was the artistic director of Colorado's Bravo! Vail Valley Music Festival for 13 years, and the arts correspondent for CBS Sunday Morning for over 25 years. And then in her early 70s, Eugenia was diagnosed with Alzheimer's disease. Instead of crawling into a corner, she picked up paper and pencil and started writing - in poetry. She has no idea why she wrote in verse, but the words flowed and resulted in her vivid new memoir, “Like Falling Through a Cloud: A Lyrical Memoir of Coping with Forgetfulness, Confusion and a Dreaded Diagnosis.” Eugenia tells us how she stays positive despite her "gnarly" disease and about how she and her husband Dick are making every moment in life count, whether on tour with "Like Falling Through a Cloud" or among the bears and deers in their upstate New York house. Dick tells us about his experience of Eugenia's diagnosis, and she reads from "Like Falling Through a Cloud. " Tune in for a tale of love and the incredible power of music.
To purchase a transcript of this episode please visit this page: Transcripts.
Eugenia's website: Like Falling Through a Cloud
Facebook page: Eugenia on FB
Growing up in Alice, Texas, Jason Resendez didn't have any experience with Alzheimer's disease and other forms of dementia. But more recently dementia has started to become an issue in his family. Now the issue has come full circle: as Executive Director of the LatinosAgainstAlzheimer's Network, all Jason thinks about are the changing demographics in the Alzheimer's community, and in our nation. That's because the number of Latinos in the US over age 65 is set to triple by the year 2050, when the care and treatment of Latinos with Alzheimer's disease will be a critical health equity issue. Jason tells us how LatinosAgainstAlzheimer's is coordinating Alzheimer's awareness and brain health promotion efforts in the Latino community, where individuals have unique barriers to the health care system, or issues around stigma and language access that other communities don't necessarily have.
To purchase a transcript of this episode please visit this page: Transcripts.
Connect: LatinosAgainstAlzheimer's
Report: Latinos & Alzheimer's Disease: New Numbers Behind the Crisis
"Celebrating the Power of Memory with Disney's Pixar's Coco" (Jason Resendez, 10/30/19, Medium)
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Music:
"Feels Like Fuzz in My Head" by Dlay | | CC BY NC ND | Free Music Archive
"Tomoshibi" by Kakurenbo | | CC BY NC | Free Music Archive
Veteran writer Leslie Gray Streeter established a loyal readership through her Palm Beach Post column, "That Girl." Now a general entertainment columnist at the Post, her writing for the newspaper began in the early 2000s and eventually included mentions of Scott Zervitz, referred to in Leslie's column as The Gentleman Friend when she and Scott were dating, and The Mister after they married. Baltimore natives who went to the same high school but didn't know each other well at the time, Leslie and Scott had re-met after 20 years and become soul mates for life. But tragedy struck in 2015, when 44-year-old Scott died of a heart attack and Leslie became a widow. By her own admission, she was not cut out for the role. Five years after Scott's death, Leslie shares her moving love story and twisty path through grief and loss toward healing in her new memoir, Black Widow: A Sad-Funny Journey Through Grief for People Who Normally Avoid Books with Words Like "Journey" in the Title. On the show and in print, Leslie has a few things to say about grief. Aging, too.
To purchase a transcript of this episode please visit this page: Transcripts
Buy Black Widow: Amazon | Barnes and Noble
Leslie's website: Leslie Gray Streeter
Columns in the Palm Beach Post: PB Post
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In the last two decades the number of people age 65 or older who are taking five or more medications has increased 300 percent. A problem that is much bigger than America’s opioid crisis, the scope and impact of over-prescribing in older adults is detailed in “Medication Overload: America’s Other Drug Problem,” a report co-authored by The Lown Institute’s Judith Garber, a Health Policy and Communications Fellow at Lown; and Shannon Brownlee, Senior VP at the Institute and author of the book, “Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer.” We talk with Shannon and Judith about what’s driving the practice of over-prescribing, solutions that have been effective in tackling the problem and what you can do to prevent adverse drug events. This episode airs on the heels of a newly-released report from Lown titled, “Eliminating Medication Overload: A National Action Plan.” Note: this episode originally aired April 11, 2019.
To purchase a transcript of this episode from its original airdate, please visit this page: Transcripts
Original Report: Medication Overload: America’s Other Drug Problem
Just released: “Eliminating Medication Overload: A National Action Plan”
Lown Institute Action Plan Issue Briefs (quick takes):
Reducing Pharmaceutical Industry Influence
Implementing Prescription Checkups
Improving Information at the Point of Care
Raising Awareness of Medication Overload
Educating and Training Health Professionals
NEW from Agewyz Media! Life Stories for the Ages
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Got a story to share? Email us any time at jana@agewyz.com
Geriatric Care Manager Sonja Kobrin was in her twenties when she began caring for the grandparents who raised her. She had no help and was traumatized by the experience, but it informed her approach years later, when she cared for the biological father who had been absent in her childhood. This school of hard knocks training has influenced Sonja’s holistic and comprehensive approach to helping her clients at VIP Care Management, the Palm Beach County, Florida company she co-founded with her husband in 1993. Tune in for real talk from a compassionate care manager who shares her insights and advice, and stories of families in crisis that may sound familiar.
To purchase a transcript of this episode please visit this page: Transcripts
Explore the services of VIP Care Management
South Florida Contact: 561-588-5151
Toll free: 877-588-5158
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Award-winning filmmaker Deirdre Fishel walked around in a state of rage during the making of her documentary film, “Care,” which delves into the world of paid care from the perspective of both workers and care recipients. Deirdre talks about the making of her film, and about how her vibrant but frail mother influenced her decision to make it. As we head into the 2020 presidential elections, “Care” is a must-see film for candidates—and a powerful tool for advocates. Note: this episode originally aired June 8, 2017. We have an update at the end of this broadcast.
To purchase a transcript of this episode as aired on its original airdate, please visit this page: Transcripts
Watch the trailer: Care
Website for Deirdre's film: Care
Learn more: Domestic Workers United
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Music: “Alya” by Dlay | CC BY NC ND | Free Music Archive
Episode Art/Photo by Heidi Gutman
Brent Wright is one of 64 million sandwich generation Americans who has simultaneously cared for an aging parent and his kids, all under the same roof. What made their setup unusual? His mom moved in with Brent and his husband, Sandis, and their two adopted daughters. Brent tells us how the dynamics in their family changed when his mom moved in, and how his 7- and 10-year-old daughters help care for their grandma. Brent Wright is the Chief Operating Officer of Family Equality, a nonprofit that advances legal and lived equality for LGBTQ+ families, and for those who wish to form them, through building community, changing hearts and minds and driving policy change.
To purchase a transcript of this episode please visit this page: Transcripts
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Learn more about Family Equality: Advancing Equality
Family Speak Out Pearl of Wisdom Program
Mentioned in the show: T. Rowe Price Annual Parents, Kids & Money Survey
One in 68 children born in the US today is diagnosed as being on the autism spectrum. The vast majority of them are being raised by single moms, and boys make up roughly three-quarters of those diagnosed. Faced with these and other alarming statistics, Topher Wurts decided to use his background in tech media to develop Autism Village, a free mobile app designed to help families find autism-friendly places and services. The issue is personal for Topher: his son, Kirby, was diagnosed with autism at eighteen months old. Topher shares his family’s caregiving journey with Kirby, from altered careers and tricky social situations to the all-autistic Boy Scout troop Kirby thrives in. He tells us why celebrating each day is what his family is all about, and how his non-profit Autism Friendly is training businesses to better serve clients on the autism spectrum. Note: this episode originally aired August 3, 2017.
To purchase a transcript of this episode please visit this page: Transcripts
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Download the Autism Village free app
More about Autism Village
Training for businesses
Additional Resources:
“Born on a Blue Day”by Daniel Tammet
“Ten Things Every Child With Autism Wishes You Knew”by Ellen Notbohm
Books by Temple Grandin
Learn about jazz pianist Matt Savage
Michigan resident Shaista Kazmi has firsthand knowledge of the isolation and guilt felt by millions of family caregivers. But as a Pakistani Muslim, she's had the added challenge of finding culturally competent home health aides for her elderly family members. To help caregivers like her avoid the same fate, Shaista founded Detroit-based Apna Ghar, the first senior care agency in America dedicated to serving the needs of elderly ethnic minorities. Shaista tells us how well-meaning senior care agencies tried but failed to meet the cultural needs of her family members, and how it affected her ability to work and raise her kids. She shares her first generation perspective on the dilemmas faced by her mostly Indian and Pakistani clients, who speak little or no English and eat foods that are particular to their cultures and unfamiliar to most in-home aides. Immigrants who came to America with next to nothing, these ethnic minority elders assimilated and built successful lives. Now they are assimilating in a whole new way, attempting to age in place with dignity but hard-pressed to find culturally competent care or even admit that they need help.
To purchase a transcript of this episode please visit this page: Transcripts
Learn more: Apna Ghar Home Care
Call Apna Ghar: (248) 325-9028
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Music: “Chupke Chupke” - Ustad Salamat Ali Khan [Recording Artist: Iqbal Asif]
Single Payer, Medicare For All, Universal Healthcare - as these phrases get tossed around the presidential debate stage we get real with Suzanne Garber, whose documentary film, "Gauze: Unraveling Global Healthcare" compares and contrasts healthcare systems around the world to determine what "best healthcare" means and what it really looks like. We talk with Suzanne about her own experience with medical care, both in the US and abroad, what she discovered during the making of "Gauze" and why many Americans are choosing to go overseas for affordable, quality care. Tune in for a lively conversation with this filmmaker who traveled to 24 countries and 174 hospitals in search of the best healthcare systems around the world.
To purchase a transcript of this episode please visit this page: Transcripts.
New from Agewyz Media: Life Stories for the Ages
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Website for the film: "Gauze: Unraveling Global Healthcare"
Gauze (company) database of international hospitals: Gauze
Two companies that list healthcare costs: Castlight Health and MediBid
Additional links referenced in the interview:
- Bankruptcies resulting from medical problems: American Journal of Public Health
- Life Expectancy
- European tax rates: Here and Here
- Hospital non-profit money makers and for-profit money losers
LA resident Cynthia Lim, author of the book, "Wherever You Are: A Memoir of Love, Marriage and Brain Injury," returns to the show a year after our first interview to talk about how her life has changed since the death of her husband, Perry. Retired from working in the LA Unified School District, Cynthia has also raised two grown sons and been a fulltime caregiver for her husband. She talks about the gradual changes she’s made, to her house and in her life, now realizing this is a point in her life where she has the freedom to actually do what she wants to do. Traveling on her own still comes with feelings of guilt, but Cynthia recently gained perspective talking with others at a recent conference of the Well Spouse Association, where she delivered a keynote speech. Cynthia Lim holds a BA in Experimental Psychology from UC Santa Barbara, a Masters in Social-Work from UC Berkeley, and a PhD in Social Welfare from UCLA. Her husband, Perry, passed away on April 30, 2018.
To purchase a transcript of this episode please visit this page: Transcripts
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Listen to our previous interview with Cynthia: Episode 151
Explore Cynthia’s writing: Cynthia Lim
Read an excerpt from “Wherever You Are”: Excerpt
Mentioned in the show:
The Well Spouse Association
WriteGirl – LA non-profit empowering teen girls
Music:
“Early Rising” by Dlay | CC BY NC ND | Free Music Archive
“Beautiful Rain” (stripped down remix) by Ketsa | CC BY NC ND | Free Music Archive
What happens when a gay, middle-aged daughter who has never gotten along with her makeup-addicted, former television singer mother is suddenly thrust into the role of her caregiver? That's the subject of James Beard Award-winning food writer Elissa Altman's new book, "Motherland: A Memoir of Love, Loathing and Longing." Jana talks with Elissa about how “Motherland” evolved and what it was like for the author to revisit her complex relationship with her mother, Rita, this time through the prism of hands-on care. At age 56, after countless therapy sessions and the publication of three memoirs, Elissa finally has a healthy relationship with her mother. The key to their success? Setting firm boundaries. Elissa is still actively engaged in Rita’s life, but they no longer speak fourteen times a day. Tune in for a lively conversation.
To purchase a transcript of this episode please visit this page: Transcripts
For more details visit Elissa's website
Follow her on Twitter: @ElissaAltman | Facebook | Instagram: elissa_altman
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Adrienne Glusman always knew she would have to care for her mother at some point. It just happened 30 years sooner than she expected. An only child of divorced parents, Adrienne was 29 years old and traveling the world in between waitressing gigs in New York City when her mother was diagnosed with Parkinson's disease. Adrienne initially managed her mother's care from a distance, flying back and forth between New York and her mother's home in Tampa, Florida during emergencies. But as her mother's Parkinson's progressed, Adrienne became more anxious. She finally decided to leave New York and move back to Florida, to be a more hands-on caregiver. Jana talks with Adrienne about how caregiving has impacted her life and her career, the grueling process of finding an assisted living facility for her mom and juggling visits to the facility with the demands of her work. Now an entrepreneur and fierce advocate for millennial caregivers, Adrienne says aging organizations need to start preparing themselves for the reality that millennials are the people they're going to be having the conversations with. Adrienne Glusman is a public speaker, EMD Serono's "Embracing Carers" Ambassador and primary caregiver to her mother, Hetty.
To purchase a transcript of this episode please visit this page: Transcripts
Connect with Adrienne on Instagram: @journeyedcaregiver | On Facebook: journeyedcaregiver
WSJ article featuring Adrienne's story: "The Call to Care for Aging Parents Comes Sooner Now" (8/6/2018)
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Pioneering educator and researcher Dr. John Eric Baugher was just eighteen years old when his mother was murdered. Filled with rage, John felt he was fated to join his mother's killer in life imprisonment. Not behind bars, but behind psychological walls of unresolved grief and anger. How he channeled his grief and discovered compassion and even humor in the face of death is at the heart of John's new book, "Contemplative Caregiving: Finding Healing, Compassion and Spiritual Growth Through End of Life Care." Jana talks with John about how "Contemplative Caregiving" evolved from his early years as a hospice caregiver in New Orleans, at the peak of the AIDS crisis, to working with hospice volunteers at a maximum-security prison and interviewing dozens of hospice volunteers in the US and abroad. Without sugarcoating the experience, John also describes meeting his mother's killer, who is still behind bars. "Contemplative Caregiving" affirms John's belief that we can transform experiences of loss and suffering into a path of compassion, and that even amid the challenges of caregiving we can find joy in unlikely places.
To purchase a transcript of this episode please visit this page: Transcripts.
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Got a story to share? Email us any time at jana@agewyz.com
Visit John's website
Order John's book: Contemplative Caregiving: Finding Healing, Compassion and Spiritual Growth Through End of Life Care
Music:
“early rising” by Dlay | CC BY NC ND | Free Music Archive
“Wounds (remix) by Ketsa | CC BY NC ND | Free Music Archive
In a span of five years, Nebraska native Valerie Bourdain lost her daughter to adrenal cancer, her mother to lung cancer and her father to Chronic Lymphomatic Leukemia (CLL). Midway through their daughter’s cancer journey, Valerie's husband left the marriage. Valerie forged ahead. But as the sole caregiver for all three family members, her weight and blood pressure soared to dangerously high levels. Finally, she was motivated to get healthy so her grown son wouldn’t have to care for her later in life. As Valerie slowly rebuilt her life, and her body with the help of a fitness and nutrition coach, she also began working on a memoir titled, "Put Up Your Umbrella: Finding Shelter in the Storm of Cancer." Tune in for an incredible story of resilience, reinvention and learnings along the way. Note: this episode first aired August 18, 2016 . We have an update at the end of the show.
To purchase a transcript of this episode as it originally aired, please visit this page: Transcripts
Subscribe to The Agewyz Podcast on iTunes
Buy Valerie’s book: Put Up Your Umbrella
Explore Valerie’s website
Find Valerie on Facebook
What is Adrenal cancer?
Music:
“Always Late” by Ketsa | CC BY NC ND | Free Music Archive
“I can see daylight again” by Dlay | CC BY NC ND | Free Music Archive
In 1996, Mike O’Krent became a volunteer interviewer for Steven Spielberg's Survivors of the Shoah Visual History Foundation, the largest oral history project captured on video in the world. The experience of interviewing Holocaust survivors rocked Mike’s world and led him to found Life Stories Alive, which records the life stories of individuals, couples and siblings for their families before it’s too late. Mike’s own father and grandfather died before he could capture their stories, so he vowed not to make the same mistake with his mother. Mike talks about getting hooked on the process of storytelling, why it’s important for us to know our elders’ histories and about his mission of helping others unearth stories of their loved ones that in many cases they’ve never told anyone before.
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Learn more about LifeStories Alive
"Being Humble Is Nothing to Brag About" by Mike O'Krent (8/27/2018)
Mike's list of 15 Powerful Lifestory Questions to Ask Your Loved One
Music:
“early rising” by Dlay | CC BY NC ND | Free Music Archive
“Arashi” by Kakurenbo | CC BY NC | Free Music Archive
Janet Elsbach was raised by people who did a lot of cooking, but she didn't go to professional cooking school. A home cook inspired by seasonal food, the cravings of those she loves to feed and the idea of bringing people together at the table, Janet knows from personal experience that in times of illness and sorrow there's nothing like the gift of food. Her new book, “Extra Helping: Recipes for Caring, Connecting, and Building Community One Dish at a Time” includes personal stories from the front lines of care, cooking shortcuts for cooks short on time and tips for tweaking recipes to suit all kinds of dietary restrictions. Janet tells us how “Extra Helping” came about, how illnesses in her own family changed the way she receives the gift of food, and about the surprise gift of Kollyva she received from a Greek friend following the death of Janet’s older sister from cancer. What Janet hopes to offer, with “Extra Helping,” is not so much a group of recipes but the idea that no matter what, you can begin.
To purchase a transcript of this episode please visit this page: Transcripts
Janet’s website and book
Connect on Facebook
Janet’s handle on instagram: @raisinporpoise
NOTE: A portion of the proceeds from the sale of each copy of Janet's book supports Feeding America and their efforts to combat hunger.
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Music: “Goodbye and Thank You” by Ketsa | CC BY NC ND | Free Music Archive
What happens when a family member or friend is incapacitated and they’re counting on you to make a healthcare decision for them? Do you take the doctor's advice for treatment? Or do you push back, knowing the patient would never want the treatment the doctor is suggesting? In high pressure situations like this, the wisdom of someone like Viki Kind is invaluable. Viki is what's known as a clinical bioethicist. She helps families make good medical decisions and she counsels healthcare professionals on how to do right by their patients. On the show, we examine what went wrong in situations where the patient's wishes were not honored, and Viki offers practical advice for making decisions that are right for you. Viki Kind is a professional speaker, a hospice volunteer and author of the award-winning book, "The Caregiver's Path to Compassionate Decision Making: Making Choices For Those Who Can't."
To purchase a transcript of this episode please visit this page: Transcripts
Explore Viki's website and free resources
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Music: "True Blue Sky" by Blue Dot Sessions | CC BY NC | Free Music Archive
When Judith Henry's parents became ill in 2007, not even her reputation as a pragmatist, a planner and responsible eldest sibling could prepare her for what lay ahead. But Judith had one advantage: around age ten she had played a caregiving role for her mother, who was in and out of hospitals. Judith's caregiver-in-training childhood and transition to aiding her elderly parents in the last phase of their lives is at the heart and soul of her book, "The Dutiful Daughter's Guide to Caregiving: A Practical Memoir." Jana talks with Judith about her no-nonsense, witty and practical "Dutiful Daughter's Guide to Caregiving" and how being plunged into 24/7 care made her realize that when you're caring for a parent, it's not just the time you're actually caring for them - it's your past and your present and your future, all brought to the table. From an astrologist's prediction that came true and giving her dad a time out during Hanukkah dinner to helping her mother plan her own funeral, Judith mixes it up in this lively conversation. Note: this episode originally aired April 8, 2016.
To purchase a transcript of this episode please visit this page: Transcripts
Learn more at Judith's website
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Being able to speak and write were central to Debra Meyerson's career as a tenured professor at Stanford University, where her work revolved around diversity, gender, identity and organizational change. But when she suffered a severe stroke that nearly killed her, the career by which Debra defined herself was gone - cut short by her stroke. Jana talks with Debra and her son Danny Zuckerman, co-authors of the new book, "Identity Theft: Rediscovering Ourselves After Stroke," an account of Debra's extraordinary efforts to recover and her journey to redefine herself after her traumatic event. "Identity Theft" also includes stories of fellow stroke survivors and highlights the emotional journey in recovery and what family members and partners go through. The authors share how their family's lives changed as a result of Debra's stroke and talk about the hard work needed to regain everyday capabilities. All proceeds from the sale of "Identity Theft" will be used to fund a new nonprofit initiative called Stroke Forward.
To purchase a transcript of this episode please visit this page: Transcripts
Learn more about Stroke Forward and "Identity Theft"
Additional resource: CaringBridge
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Music: "Burning Light" by Ketsa | CC BY NC ND | Free Music Archive
Former Ohio state trooper Matt Gurwell spent 20-plus years delivering bad news to family members about accidents involving older drivers. Now instead of delivering death notifications, he’s helping to preserve family relationships and saving lives with a self-assessment tool called Beyond Driving With Dignity. Matt is the founder of Keeping Us Safe, and Beyond Driving With Dignity is the organization’s proactive approach to helping family members and older drivers make their own decisions, but the right decision, about possibly giving up driving. Matt says not all older adults need to turn over their car keys. He explains why and tells us how Keeping Us Safe’s self-assessment tool works. Matt also explains why handicap parking spots actually increase accidents and why he dreads having the conversation with his own father about giving up the car keys. The work of Keeping Us Safe has been recognized by the NY Times, NPR, the Alzheimer's Foundation of America, NBC News and many other media outlets and organizations. Note: this episode originally aired December 14, 2017. We have an update at the end of today’s broadcast.
Learn more: Keeping Us Safe
Contact Keeping Us Safe: 877-907-8841
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Music: "Growing Silence" by Ketsa | CC BY NC ND | Free Music Archive
THE AGEWYZ PODCAST IS CELEBRATING ITS FOUR YEAR ANNIVERSARY!
THANK YOU FOR TUNING IN OVER THE YEARS!
There are lots of books on the market about balancing career and children, but where do you turn for advice on balancing career and aging parents? With 10,000 people turning 65 every day and employers slow to acknowledge the needs of their caregiving employees, Liz O'Donnell's new book, "Working Daughter: How to Care for Your Aging Parents While Making a Living" could not be more timely. Liz was riding high in her career as a marketing executive and raising two children when both of her parents were diagnosed with terminal illnesses on the same day. Her book, "Working Daughter: How to Care for Your Aging Parents While Making a Living" is filled with vivid anecdotes from Liz's white-knuckle experience as the primary caregiver for both of her parents. A roadmap to caring for aging parents without losing your job, your marriage or your sanity, "Working Daughter" is a book for caregivers everywhere but especially working women. Liz O'Donnell is the founder of WorkingDaughter.com, a community for women balancing eldercare and career. She's also the author of "Mogul, Mom & Maid: The Balancing Act of the Modern Woman."
To purchase a transcript of this episode please click here
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Buy Liz's book: "Working Daughter: How to Care for Your Aging Parents While Making a Living"
Visit Liz's Working Daughter website
Join the Working Daughter closed Facebook Group
Music: "Turning on the Lights" by Blue Dot Sessions | CC BY NC | Free Music Archive
Award-winning Canadian photographer Jay Perry dodged burning cars in Haiti after the country’s devastating 2010 earthquake, he’s had Haitian rebels point their guns in his direction and he’s driven across the country in a cramped van eating and drinking off four dollars a day. But watching his father slip away from cancer was harder than any of those ordeals. Jay tells us why, and he talks about his book, "My Dad Got Sick: Love and Insights From a Caregiver's Unexpected Journey Through Cancer," an emotional account of interrupting his skyrocketing career at age thirty-one to help his father battle terminal cancer. Jay shares the non-traditional medicine practices incorporated into his dad’s daily routine. He opens up about the anxiety of being in debt after leaving the workforce to care for his dad and explains why it was worth it. Jay also tells us about his mission trip to Haiti and how his photograph “Kettenie-Love” changed both his life and the life of the little girl in the photo. Note: this episode originally aired June 28, 2018.
Jay's book: My Dad Got Sick: Love and Insights From a Caregiver's Unexpected Journey Through Cancer
Explore Jay's photography
The story behind Jay's award-winning photograph “Kettenie-Love”
Learn more about Jay's project Friends With Hearts
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Music: “Melancholia” by Dlay | CC BY NC ND | Free Music Archive
Did you know that Millennial caregivers make up nearly a quarter of America's 44 million family caregivers? One of them is Atlanta writer and dementia care advocate Aisha Adkins. An only child and African American who grew up in a predominantly white neighborhood near Seattle, Aisha was bullied in school and had forty operations as a child. But resentment is not in her wheel house. In 2017, she founded Our Turn 2 Care, a website that connects young adult caregivers with information, resources and each other. Aisha helped care for her dad when he had a stroke and she now cares for her mother who has Frontotemporal dementia, the most common form of dementia for people under the age of 60. Aisha talks about how her childhood prepared her for caring for her mom, getting her Master's degree piecemeal from Georgia State University and her advocacy work on behalf of her fellow Millennial caregivers. She also shares her learnings from caregiving thus far, and she tells us why she's perfectly happy spending a Saturday evening sitting on the sofa with her parents.
To purchase a transcript of this episode please visit this page: Transcripts
Aisha's website
Explore Our Turn 2 Care
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Music: "Save One Another" by Dlay | CC BY NC ND | Free Music Archive
Did you know that in the United States there are over 80,000 centenarians? Those are Americans who have made it to age 100 and beyond. They were born at a time when the life expectancy was just 53-1/2 for men and 56 for women. Today, life expectancy is 76 for men and 81 for women. So what is it like to be age 100 or older? And what can we learn from the men and women in this demographic? LA photographer Robert Duron is finding out. Robert is in the midst of photographing 100 of the nation's centenarians for California-based health plan SCAN, which is celebrating America's 80,000 plus centenarians with a new digital portrait series called, "stages: 100 over 100." Robert Duron has photographed famous athletes and musicians, models and even Ron and Nancy Reagan for the LA Chamber of Commerce. But "stages: 100 over 100" is nothing like his commercial work. Robert tells us how this project is different and what he's learned from the centenarians. He shares his approach to the photo shoots and why "stages: 100 over 100" is a project he wishes he could focus on exclusively.
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Explore the project: "stages: 100 Over 100"
See some of Robert's other work: Robert Duron Photography
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Pioneering educator and researcher Dr. Pauline Boss coined the term "ambiguous loss" to describe a form of grief that is common in caregivers of family members with Alzheimer's and other forms of dementia. It's marked by a never-ending grief for the person with dementia who is "there but not there," and it forces the caregiver to confront a new and confusing relationship - one ruptured by dementia. Dr. Boss tells us how the phrase "ambiguous loss" evolved and how she experienced it in her own childhood, growing up in Wisconsin in her Swiss immigrant family. She explains why people who are mastery-oriented have a harder time with ambiguous loss, how Western culture has conditioned us to believe we can change things we can't and how this mindset prevents caregivers from having "good enough" relationships with care partners who have dementia. We'll hear suggestions for how to lower stress levels and increase your tolerance for ambiguity, something Dr. Boss is working on in her own life as a caregiver for her husband, who is unable to walk. When she's not caring for her husband, Dr. Boss is working on a new book called, "The Myth of Closure." She recently launched her ambiguous loss online training program. Dr. Pauline Boss is the author of five books including, "Ambiguous Loss: Learning to Live With Unresolved Grief," and the book, "Loving Someone Who Has Dementia" which will be released as an audio book later this year.
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Explore the work of Dr. Pauline Boss: Ambiguous Loss
Explore our campaign on IFundWomen: Life Stories for the Ages
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We celebrate this Memorial Day with the story of a military caregiver whose husband returned from active duty alive but mentally wounded. Jill Armijo’s husband, Joe, served in the Navy as a machinist and was deployed to a ship in the Persian Gulf just before Operation Desert Storm. A gentle, generous man, Joe returned from the Gulf War paranoid and with delusions of grandeur. For the past 20 years, his greatest battle has been schizophrenia. Although the medical community eventually recognized Joe’s condition as Gulf War Illness, Jill says the VA wasn’t much help when he came back from the Gulf and most doctors didn’t know what to do with him. Jill talks about the pressure of caring for Joe while holding down a job for her entire family, and how her sons saved the marriage and was patient with Joe while she often lost her cool. She provides vivid examples of Joe’s behavior, offers coping tools for other caregivers and tells us how she stopped trying to cure Joe and learned to love him just as he is. Jill is currently working on a book about her family’s journey called, "Home of the Unknown Soldier: How Coming Back Became the Other Ultimate Sacrifice."
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Explore Jill’s work and caregiving tools: Jill Armijo
Connect with Jill on Facebook | Instagram: @jarmiji1962 | Email: jilldawnarmijo@gmail.com
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Chicago native Denise M. Brown founded CareGiving.com at a time when Google, Twitter, Facebook and Wikipedia didn't even exist. Everyone told Denise she was wasting her time. No one would be interested in a website like CareGiving.com. She launched the site anyway and now, over twenty years later, CareGiving.com is the go-to destination for millions of family caregivers desperate for practical advice and encouragement. Jana talks with Denise about her early influences, how she manages her own parents and the two-day, National Institutes of Health event that shocked Denise into the realization that caregivers are invisible even the medical community. Note: this episode originally aired November 2, 2017. It has been lightly edited.
Blog post mentioned in the show (Denise M. Brown): "What They Need Isn't What I Need"
Attend CareGiving.com's Fourth Annual Caregiving Conference (Nov. 7-10, 2019)
Denise contact info: 773-343-6341 | denise@caregiving..com
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A few months after their 50th wedding anniversary, Helene Berger's husband Ady was diagnosed with Alzheimer's disease. When the doctor gave him the news, Ady replied, "I don't want to live anymore." From that moment on, Helene vowed to find creative ways to make their lives as joyful as possible for as long as possible. It wasn't always easy. But Helene learned a lot along the way, and she took notes which became the basis for her new book, "Choosing Joy; Alzheimer's: A Book of Hope." Helene tells us how she and Ady worked together to communicate in a positive way, which not only led to fewer instances of Ady's inappropriate behavior but allowed them both to feel empowered. She shares the mantra she developed for herself when Ady asked her the same questions over and over, and she tells us how she went from giving unpleasant aides the benefit of the doubt to sending them packing. We all have the power to respond to mental or physical decline in a positive way. Find out how in Helene's book, "Choosing Joy; Alzheimer's: A Book of Hope."
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Explore Helene’s book: Choosing Joy
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In the next fifty years the population of Americans over age 65 will double. Where do millennials fit in? That's the question posed by filmmaker and visual journalist Sky Dylan-Robbins in her documentary short for NBC Left Field titled, “Millennials Stepping Up: How Will We Take Care of Our Parents?” It’s a topic that feels close to home for Sky. A millennial and only child whose father died of colon cancer, Sky wants make sure her mother is well cared for as she ages. She's also slightly intimidated by the prospect of preparing for her own aging. Sky tells us how the characters in “Millennials Stepping Up: How Will We Take Care of Our Parents?” are navigating the art of adulting while they also handle caregiving responsibilities. She offers her take on how millennial caregivers differ from their baby boomer counterparts, and she drops a few hints about the film on dying that she's making with her mother, Ellie Dylan, who worked at NBC exactly 40 years before Sky began working at the network. Sky Dylan-Robbins is the founder of The Video Consortium and was chosen as one of Forbes Magazine's “30 Under 30” in Media in 2018. Note: this episode originally aired May 17, 2018.
Read Sky's piece and watch the documentary short: Millennials Stepping Up
Sky’s website: Sky Dylan-Robbins
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Caregiving expert and author Jana Panarites engages with unsung heroes — people caring for family members, friends and relatives amid the demands of their own lives — plus professionals in the field of aging and writers, performers and artists who are using media to creatively address major health issues, foster dialogue and challenge widespread assumptions about aging.
Recommended by Caring.com : "Best Podcasts for Family Caregivers"
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If you’re having a hard time caring for a family member or friend, chances are there are lingering wounds in the relationship. But choosing the path of forgiveness can heal even the most fractured bonds. Take it from filmmaker Gayle Kirschenbaum, whose emotional abuse as a child made her feel like she was born into the wrong family. Her relationship with her mother was especially harsh, but Gayle chose the path of forgiveness and chronicled her journey with her mother from enemies to friends in the film, "Look At Us Now, Mother!" Gayle shares the back story on her funny, short film "My Nose" and tells us how audience reaction to the film led her to make "Look At Us Now, Mother!" She explains how digging into her mother’s past helped to heal their relationship, and she tells us how she’s using what she learned from her experience to help people discover the power of forgiveness. Gayle also tells us how her 96-year-old mother is handling her fame from the movie in her Boca Raton, Florida community, and why her mother is still the life of the party.
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Watch the trailer for Look At Us Now, Mother!
Gayle Kirschenbaum website and TEDx talk
Sign up for Gayle's upcoming (6/23/19) workshop: transforming difficult relationships into healthy ones.
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George and Carol Shannon were on their last night of vacation in Cabo San Lucas, Mexico when Carol had a stroke. A day later, in a hospital back in their hometown of Pittsburgh, PA, a million questions went through George's mind. He was still working. How would he handle this? How would he be a caregiver? Would he be a caregiver? Who would take care of Carol? How long would she be in this condition? Distant and selfish by his own admission, George realized he'd taken his wife for granted during their entire 41-year marriage. But he not only rose to the occasion and cared for his wife Carol, along with her he went on a remarkable journey of discovery which allowed him to fall in love with Carol all over again. Jana talks with George and his son Chad, co-authors of "The Best Seven Years of My Life: The Story of An Unlikely Caregiver" about George's caregiving journey of redemption.
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Learn more about "The Best Seven Years" and connect on Facebook: Best Seven
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We hear a lot about how the opioid crisis is destroying families and communities. But the scope and impact of medication overload is much bigger: in the last two decades the number of older adults taking five or more medications has increased 300 percent. There’s also been a spike in the number of serious adverse drug events (ADEs). These alarming facts and others are outlined in a new report from the Lown Institute titled, “Medication Overload: America’s Other Drug Problem.” Jana talks with the report’s co-authors: Judith Garber, a Health Policy and Communications Fellow at the Lown Institute; and Shannon Brownlee, Senior VP at the Institute and author of the book, “Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer.” Judith and Shannon talk about the dangers of medication overload, what’s driving the practice, solutions that have been effective in tackling the problem and what you can do to prevent adverse drug events.
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Read the Lown Institute report: Medication Overload
Check out the Lown Institute website
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TIPS FROM JUDITH AND SHANNON...
Before adding another medication, ask your doctor these questions to avoid unnecessary medications and set a “stop date” for medications that aren’t meant to be taken long-term:
- What is this medication for? What disease is it treating?
- Is there evidence that this drug is effective for patients of my age and with my medical conditions?
- Out of 100 patients like me, how many are helped and how many are harmed by this medication?
- How will we know when the medication is working or not working?
- Can I start on a lower dose and see if that works?
- How long should I take this medication? When should I stop taking it?
- Do you know how this medication might interact with other drugs I’m already taking?
- Are there side effects I should watch out for if I take this medication?
Jaime Estremera-Fitzgerald is a CEO on a mission. As head of South Florida’s Area Agency on Aging (known locally as Your Aging and Disability Resource Center), Jaime leads a team that serves seniors, adults with disabilities and the people who care for them in Palm Beach, the Treasure Coast and Okeechobee Counties. Jaime explains how the Center connects people with a vast array of home and community-based services designed to help people continue to age in their homes. Their services include directing people to respite care services, providing tools to fight the exploitation of elders and guiding people through the maze of Medicare and Medicaid enrollment. Jaime also talks about caring for his own parents, his complex emotions around moving his father into an assisted living facility (ALF) and how his father’s Cuban and Puerto Rican heritage influenced their choice of ALF. There is an Area Agency on Aging in every county in America. Find yours here: Area Agency on Aging. Note: this episode originally aired December 15, 2016.
Learn more about Jaime’s organization: Your ADRC
Call the Toll Free Helpline: 866-684-5885
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58-year-old Brian LeBlanc is an international Alzheimer's advocate who speaks at conferences, workshops, symposiums, and even on dementia-friendly cruises. He's got a sense of humor that will knock you over. But don't call him an Alzheimer's patient. And don't call him an Alzheimer's sufferer. Brian explains why, and he tells us how he's living well with Alzheimer's disease in this lively conversation.
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Brian's website: A Bit of Brian's Brilliance
Connect with Brian on Facebook
Connect on Twitter
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No one knows what it’s like to be old until they get there. That’s the view of Ronni Bennett, a former radio producer in her 70s who also spent over two decades as a writer and producer in network television in New York City. These days Ronni is busy with her acclaimed blog "Time Goes By," where she explores aging with humor, compassion and uncommon candor. Ronni tells us about the evolution of her blog and what’s good about getting older. She explains how media fuels America’s rampant ageism and she reflects on the Op-Ed piece, "Am I Going Blind?" by New York Times writer Frank Bruni. Ronni also tells us why she decided to write about her 2017 diagnosis of pancreatic cancer. Note: this episode originally aired March 8, 2018. We have an update at the end of the show on Ronni’s condition and how cancer has changed her life.
Ronni’s website: Time Goes By
Ronni’s March 1, 2019 Cancer Update
”Am I Going Blind?” by Frank Bruni (2/23/18)
Ronni’s blog piece in response to the Bruni piece
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Much of the research on dementia in the United States has overlooked African Americans, but the prevalence of dementia in this population is more widespread than you might think. PhD candidate Kalisha Bonds is doing a deep dive into the subject as a student at Oregon Health & Sciences University (OHSU). Her research is focused on decision-making and the use of formal medical care by African Americans with dementia and their care partners. Kalisha tells us how being raised by her grandmother inspired her career path and what she’s uncovered so far in her research. She tells us how she finds research participants in the Portland area, and how the culture compares with the rural Tennessee town where she was raised. She also defines a word you’ll find hard to forget: dyad. Kalisha Bonds, MSN, PMHN-BC, is a Ph.D. candidate in the School of Nursing at OHSU.
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OHSU Profile of Kalisha Bonds
Also mentioned in the interview:
“Formal Service Use by African American Individuals with Dementia and Their Caregivers: An Integrative Review” – Journal of Gerontological Nursing (K. Bonds and KS Lyons)
Medical Apartheid (Harriet A. Washington)
Alzheimer’s Association
Contact Kalisha: bondsk@ohsu.edu
Connect on Twitter: @future_drbonds
Kalisha on Facebook
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Wanting to care for your child is a basic instinct for most mothers. All the more so when that child has a chronic condition, like the son of today’s guest—a Wisconsin mother who asked that we not use her last name. Carol’s adult son has Multiple Sclerosis (MS), but he refuses to let Carol care for him. She says their relationship wasn’t always strained. On the show, Carol reflects on how she and her son arrived at this impasse and she tells us how she navigates her relationship with her son now. She shares her concerns for her son’s future, and tells us why she still fundraises for MS but is more invested in advocating for criminal justice reform in Wisconsin. Carol is the President of MOSES (Madison Organizing in Strength, Equality and Solidarity).
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Music: “L'Etoile danse (Pt. 1)” and “Blind” by Meydan | CC BY | Free Music Archive
In the U.S., as many as 8.4 million people act as caregivers to adults with emotional or mental health conditions. That’s according to a recent report co-authored by the National Alliance for Caregiving (NAC) and the National Alliance on Mental Illness (NAMI). Mental health caregivers often have a heavier burden of care and higher stress levels than a typical family caregiver. One such caregiver who faced a heavy burden—and ultimately, heartbreak—is Kristi Horner, whose brother suffered from mental illness and took his own life. Kristi is the founder of Courage to Caregivers, a Northeast Ohio non-profit focused exclusively on helping caregivers for a loved one with mental illness. Jana talks with Kristi about her journey with her brother through mental illness, and about how Kristi’s organization is helping caregivers get past the stigma of mental illness by providing them with education, support and empowerment.
To purchase a transcript of this episode please visit this page: Transcripts
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Courage to Caregivers direct dial: (216) 536-7699
Website: Courage to Caregivers
National Alliance on Mental Illness
Guidebook for Mental Health Caregivers (NAC and NAMI)
Brooklyn-born attorney and empowerment guru Tamesha Keel was riding high in her career when her father died and she took on the role of sole caregiver for her mother. Years earlier her mother had survived a massive brain hemorrhage. She couldn’t live alone, so she moved in with Tamesha. Then her mother was diagnosed with Alzheimer’s disease and terminal cancer. Tamesha talks about powering through work as she coordinated her mother’s multiple care needs, letting go of her “perfect daughter” mindset, tough-love fights with her mom and their complicated but magical trip to New Orleans sponsored by the Dream Foundation. Tamesha also talks about the demographics of care and she offers caregiver coaching tips learned the hard way. Note: this episode originally aired March 5, 2016.
Learn more: Lawportunities.com
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Music: “Harp Calling” by Ketsa | CC BY NC ND | Free Music Archive
Florida native Katherine Summers stumbled into her career as a paid caregiver. She had some time on her hands, and friends from her childhood began asking if she could check in on their aging parents. Katherine found she liked being around the elders, and caring for them came naturally to her. So she decided to take classes in Alzheimer’s and dementia care and work as a caregiver professionally, first through an agency and then independently. For the past six years she’s cared exclusively for two people who live together: a cancer patient and his mother who has dementia. Katherine tells us how she acts as a buffer between her two fragile clients and what she’s learned from over a decade of caring for other peoples’ family members. She provides tips for finding reliable in-home care, she talks about coming to terms with clients who die and tells us how she counsels family members who are confused about what’s going on with their elderly loved ones. Whether you’re thinking about hiring a home health aide or are just curious to know how a high-quality caregiver manages her job, this interview with a seasoned pro is for you.
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Alzheimer’s Speaks founder Lori La Bey is driven to help people with dementia and their care partners live positive and purpose-filled lives. The work of her Minnesota-based advocacy group has been recognized by Oprah Winfrey, Dr. Oz and Sharecare and Alzheimer’s advocate Maria Shriver, who named Lori an “Architect of Change for Humanity.” For Lori, it’s all about shifting from crisis to comfort and choosing to consciously care in every moment we’re given. Lori talks with Jana about how her work evolved, why she created multiple platforms for people to access dementia care educational tools and the lone criteria for her next gig when she left the residential real estate business after 25 years. And then there’s story of Betty the Bald Chicken.
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Resources mentioned in the show:
Your Memory Chip™ Tool
Tips for communicating with a person with dementia
Alzheimer’s Speaks Website
Alzheimer’s Speaks Radio
Dementia Chats Video Interviews
Alzheimer’s Speaks Blog
Alzheimer’s Speaks YouTube Channel
Memory Café, General Information
Memory Café Directory
Norm McNamara Purple Angel website
The Purple Table
In 2015, award-winning journalist John Leland set out on behalf of The New York Times to meet members of America’s fastest growing age group: people age 85 and older, or what gerontologists often refer to as “the oldest old.” What John discovered during his deep dive into the world of elders upended his own ideas about old age. It also challenged the widespread notion that old age is nothing more than a grim period of physical and emotional decline. On the show John shares some of the lessons he learned from six elders profiled in his best-selling book, “Happiness Is A Choice You Make: Lessons From a Year Among the Oldest Old.” They include his own mother, Dorothy Leland, and the late Jonas Mekas, who hung out with Andy Warhol and Allen Ginsberg and was known as the godfather of American avant-garde cinema. He talks about his series “85 and Up” for the Times, which formed the basis for his book, and about the huge influence we all have over the quality of our lives as we age. Hint: research shows that a positive view of old age results in adding 7-1/2 years to your life.
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Website for John’s book: Happiness Is A Choice You Make
John’s series for The New York Times: “The Best of ‘85 and Up’”
John's tribute to Jonas Mekas after his death: “‘Trust Your Angels’”
Candia, New Hampshire residents Kathy and Ray MacDonald vowed when they got married that neither mother-in-law would ever live with them. Then Kathy’s mother Simone developed Alzheimer’s disease. The working couple now juggles caring for 78-year-old Simone with fulltime jobs, getaways planned months in advance and a rotating team of in-home aides paid for through Simone’s long-term care insurance. On the show Kathy tells us how the new normal unfolded, what her son’s eighth grade presentation on Alzheimer’s taught her about the disease and why she knows she and Ray made the right decision. Tune in and get inspired.
Easter Seals Services for Seniors: ESSS
NH Union Leader article profiling the family by Roberta Baker, 12/16/18
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Singer/songwriter, guitarist and producer Kate Schutt was packed and set to leave for a gig in the Middle East when she learned that her mother had stage 3c ovarian cancer. Kate broke her contract, moved in with her mother and became her primary caregiver for the next four years. On the show she talks about returning to live in her childhood home, the intense journey with her mother from cancer diagnosis to death and writing about life and loss for her forthcoming album, “Bright Nowhere,” which Kate is working on with legendary producer/arranger Rob Mounsey. Kate riffs on the deep conversations she and her mother had during their time together, how they connected through music and how Kate and her music changed as a result of her caregiving and loss. She tells us what inspired her TEDx talk, “A Grief Casserole: How to Help Your Friends and Family Through Loss” and how she’s learning how to lean into self-care after putting so much of herself on hold. NPR calls Kate’s singing “glassily clear and glossily sweet.” Tune in and hear why.
Kate’s TEDx talk, plus music and writings: Kate Schutt
Kate’s music on Soundcloud
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Veteran journalist Paula Span has had personal experience with many of the issues explored in her twice-monthly column for The New York Times, “The New Old Age”—the only dedicated real estate at the Times that talks about aging issues and caregiving. On the show, Paula shares some of those experiences and tells us about the evolution of the column and the story behind some of her pieces, including one on the growing use of medical marijuana among seniors and another on a program for medical students that involves interacting with older adults. She also weighs in on ageism, the realities of aging in place, reader reactions to some of her more popular pieces and how the landscape of care has changed. About to turn seventy years old, Paula is strategizing for her own future care needs but has no plans to retire; besides her “New Old Age” column, she writes the “Generation Grandparent” column for the Times and she teaches at the Columbia University Graduate School of Journalism. Tune in for a wide-ranging conversation chock full of useful information.
New York Times articles by Paula Span mentioned in the show:
“Every Older Patient Has A Story: Medical Students Need to Hear It” (10/12/18)
“Older Americans Are Flocking to Medical Marijuana” (12/7/18)
“A Retirement Community Turned Away These Married Women” (8/17/18)
“A Quiet Drug Problem Among the Elderly” (3/16/18 – one in a series)
Follow Paula on Twitter: @paula_span
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Dr. Nicole Rochester has known she wanted to be a pediatrician since she was about eight years old. A Washington, DC native whose dad was a Redskins season ticket holder, Dr. Rochester has advocated for her own family members and given medical care to children in the DC Metro area for two decades. In today’s show she shares her insider’s view of the way hospitals work: how the doctor-patient relationship has changed over the years, how the fast-paced nature of hospitals affects care and why family meetings are a critical component of care. Dr. Rochester shares her concerns about the ongoing attacks on the Affordable Care Act (ACA), she tells us why being a high-maintenance caregiver is a good thing and about why she started her website aimed at helping families navigate the healthcare system. Tune in for this lively chat with tips and tools from a caring physician.
Connect with Dr. Nicole Rochester:
Website
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When Steve Burrows’ mother, Judie, fell into a coma after a routine hip surgery, he was afraid she would never wake up. Questioning Judie’s care during surgery, Steve discovered his mother was one of an alarming number of patients in the US who are harmed by medical error. His personal video diary of Judie’s recovery mushroomed into a ten-year, multi-layered investigation into the state of American health care laid bare in the documentary film, “Bleed Out”—Steve’s hair-raising search for the truth about what happened to his mother’s care. A former member of the Groundlings theater company famous for his popular comedy film “Chump Change,” Steve says “Bleed Out” isn’t a film he wanted to make but a film he needed to make. Joining him on the show to talk about how the film evolved and how it will be used to promote accountability in healthcare is producer Ilan Arboleda (Creative Chaos), who Steve met after he’d shot many years of footage, gathered in part for a medical malpractice lawsuit brought on his mother’s behalf. Steve talks about juggling his show business career with flying back and forth between LA and Milwaukee to care for his mother, how his wife supported him during a time when Steve felt his sense of humor fading and why none of us can afford to blindly trust doctors. “Bleed Out” debuts on HBO on Monday, December 17, 2018.
Watch the trailer for "Bleed Out"
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Talking about death can be difficult. But Lois Perelson-Gross believes people are eager to find a way in and begin to feel comfortable talking about the inevitable, so she helped launch Reimagine End of Life, a not-for-profit whose mission is to publicly explore death and celebrate life through creativity and conversation. Reimagine recently held its first ever festival in New York City, where some big questions about life and death were explored in over 300 unique events. On the show, Lois tells us how she went from being a Vice President at Goldman Sachs to launching her second career as a palliative care chaplain focused on humanism in medicine. She talks about how Reimagine evolved and about the Graphic Medicine-related events at the NYC festival, which included exhibits and panel discussions with cartoonists Emily Flake, Ben Schwartz, Roz Chast and others who address mortality in their often funny and poignant comics. Lois tells us about her own project, “Never the Right Time,” which debuted at the festival and combines the work of New Yorker magazine cartoonists with factual information about end of life care and end of life wishes. She also offers tools you can use to get past the stigma of talking about death and dying, and start having meaningful conversations.
Explore Reimagine End of Life: www.letsreimagine.org
Also mentioned in the show: Death Over Dinner: https://deathoverdinner.org
Go Wish (card game): http://www.gowish.org
Hello (card game): https://commonpractice.com/products/hello-game
“Being Mortal” by Atul Guwande: http://atulgawande.com/book/being-mortal/
Toronto-based researcher Dr. Vivian Stamatopoulos was 26 years old and laid off from a job when it fell to her to care for her grandfather, who had prostate cancer and advanced macular degeneration that prevented him from driving. In the midst of applying to PhD programs, Vivian took her grandfather to cancer treatments, dealt with all manner of healthcare professionals and acted as an interpreter for her mostly Greek-speaking "papou". The experience led to focusing her PhD on how the lives and identities of Canada’s 1.25 Million youth caregivers (individuals between ages 15 and 24) are impacted by having to care for a family member at a young age. Vivian tells us how Canadian government officials responded to her alarming research findings, she talks about support systems for youth carers — as they’re known internationally — in Canada vs. the UK and the US, the penalties young people face as a result of their caregiving experiences and why kids don’t want to self-identify as caregivers. She provides advice to youth caregivers on how to cope and where to turn for help.
Connect with Vivian: https://twitter.com/DrVivianS
Sample her work: “Young carers in Canada, a spotlight on research” https://www.changefoundation.ca/young-carers-canada/
Programs and Services Supporting Ontario’s Young Carers: https://bit.ly/2PXh38X
Other Support Services in Ontario:
Young Carers Initiative (Niagara-Haldimand-Norfolk region): http://www.powerhouseproject.ca/
Hospice Toronto's Young Carers Program (Greater Toronto Area) https://hospicetoronto.ca/young-carers-program/
Support Services in British Columbia:
Cowichan young carers (Vancouver Island): http://familycaregiverssupport.org/wp/
Comox Valley Youth as Caregivers Program: https://www.facebook.com/YouthasCaregivers/
Peter Fox has been called a sugar baby, a gold digger and a kept man more times than he’d care to remember. But his relationship with his partner Gary—who is decades older than Peter—is as real as it gets and the two are a couple in every way. In today’s show Peter and Gary tell us how they met, how their relationship endures despite their age difference and about their end-of-life wishes. Although Gary is fit and not on any medication, Peter anticipates caring for him in a big way in the near future. He’s ready for it: when he lived in Manhattan Peter cared for an elderly neighbor, and he now looks after a nonagenarian who lives in his Palm Beach condominium. On the show Peter also talks about his own health complications, his fears about the rise of hate crimes, healthcare from the LGBT perspective and why his new specialty is dry parties. Tune in for a moving story of two men from different generations aging together with grace. Note: this episode originally aired June 1, 2017. We have an update at the end of the show.
Music: “Barbara” by US Army Blues, Live at Blues Alley | Public Domain
Dana Walrath refers to her work as a border-crossing blend of creative writing, anthropology and art. The daughter of refugees from the Armenian genocide, she has used stories and art to teach medical humanities at the University of Vermont’s College of Medicine since moving to the state in 2000. On the show Dana talks about her graphic memoir, “Aliceheimer’s: Through the Looking Glass,” which combines drawings and stories to chronicle three years of caregiving for her mother, Alice, when she was in the middle stages of Alzheimer’s disease. Dana tells us about her frustrating encounters with the medical system, how her mother expressed herself creatively despite having Alzheimer’s and how living with her mother gave Dana an opportunity to make peace with her despite their historically difficult relationship. Currently based in Dublin, Ireland, Dana is an Atlantic Fellow for Equity in Brain Health at the Global Brain Health Institute, where she’s developing a second graphic memoir focusing on end stages of dementia and dementia across cultures. This episode is sponsored by Hero: www.herohealth.com
Learn more about Dana’s work: http://www.danawalrath.com
Explore The Atlantic Fellows for Equity in Brain Health: https://www.gbhi.org/atlantic-fellows/
When aging parents need care, the way they’ve lived their lives up to that point often factors into whether their adult children are willing to help them. In today’s episode we hear from a daughter who felt duty-bound to help her parents even though her sister refused to get involved. She explains why she became her parents’ primary caregiver, and why—despite paying a steep personal price—she views her caregiving journey as the most rewarding experience of her life. She tells us how the Manhattan co-op meant for her niece and nephew became hers out of necessity, and about how her mother’s life-threatening spinal stenosis, later diagnosed as cauda equina syndrome, led the family to spend $20,000/month for caregivers and resulted in her mother becoming eligible for Medicaid. The caregiver in this conversation has chosen to remain anonymous. Note: this episode originally aired May 1, 2016. We have an update at the end of the show.
Artist (mom’s) website: www.estellemorgan.com
Learn more about cauda equina syndrome: http://bit.ly/1SxWyuF
Learn more about naturally occurring retirement communities (NORCs): http://nyti.ms/1SvTFXY
Music: “Reflections Across the Sky” by Scott Holmes | CC BY | Free Music Archive
Cynthia Lim thought she had the perfect life: a loving husband who was also a successful lawyer, her own fulfilling career, two sons thriving in high school and a home in LA loaded with books, music and art. It all fell apart in June of 2003 when her husband, Perry, suffered a cardiac arrest and brain injury, lingering in a coma for ten days. When Perry woke up, he was unable to form sentences and he was completely dependent on others. Cynthia talks about the wrenching realities of her new life after Perry’s catastrophic event, from wanting to leave him in an institution and battling with the medical community to finding services and support for Perry all on her own and caring for him throughout his recovery. She did it all while working full-time, seeing one son off to college and guiding the other through high school, and trying desperately to find connection with her husband of twenty years. Cynthia’s story of reinvention and reimagining life with disability is captured in her memoir, “Wherever You Are: A Memoir of Love, Marriage, and Brain Injury.” This episode is sponsored by Hero.
To purchase a transcript of this episode please visit this page: Transcripts
Link to Cynthia’s book, "Wherever You Are"
Cynthia’s website
New Yorker Jennifer Levin talks about how becoming a caregiver for her father at age 32 changed her and why she wrote about her experience in Cosmopolitan digital magazine. Initially diagnosed with Parkinson’s disease, Jennifer’s father was eventually diagnosed with Progressive Supranuclear Palsy (PSP), a degenerative brain disease. Jennifer reflects on why her social media posts remained cheery even as she struggled offline with caring for her father, she tells us why she was reluctant to join a support group and why there’s a stark difference between being a Millennial or Gen-X caregiver versus caregiving as a baby boomer. She pushes back on the stereotype of young adults as being lazy and mooching off their parents, and tells us why being a bossy New Yorker is helpful advocating on behalf of caregivers.
Jennifer’s article for Cosmopolitan digital: http://bit.ly/2kpgfoG
“Caregiver Collective” private Facebook page for Millennial caregivers: http://bit.ly/2mMf0Be
More about Progressive Supranuclear Palsy (PSP): http://mayocl.in/2mfLK9t
Music: “Wounds” (remix) by Ketsa | CC BY NC ND | Free Music Archive
When her husband proposed a month’s vacation in Mexico, Susan Reid hesitated - fearful of being away from her elderly parents for so long. Susan’s mother is diabetic and her father has dementia. Neither parent drives, unless you count the golf cart Susan calls “the clown car.” In today’s episode she tells us how that trip to Mexico played out and how moving her parents to an elder-friendly community helped Susan survive caregiver burnout. She talks about her mother’s near-fatal trip to the hospital on a Halloween night, she offers her perspective on aging in America and she tells us what it’s like to get the senior discount without even asking for it. Susan also gives us the scoop on her non-caregiving siblings, including her free-spirited brother—who rents out his goats to the state of Nevada. Note: this episode originally aired on April 9, 2016. Stay tuned to the end of this airing for an update.
State-by-State help for family caregivers (interactive map): https://bit.ly/1WTd9aH
Senior Resource Guide for residents of Alameda County (CA): https://bit.ly/2EpiMhN
Music: “Kelli's Number” by U.S. Army Blues | Public Domain | Free Music Archive
Nine months after she helped move her parents from New York to Florida, Certified Aging in Place Specialist Dale Miller learned her mother had a brain tumor. A lifelong New Yorker, Dale pulled up stakes and moved to Florida too, relocating herself and her business as a commercial interior designer. On the show Dale tells us how both she and her father rebuilt their lives after her mother died, from answering her father’s questions about dating when he started socializing again and his unexpected move into a senior living community, to caring for her father as he declined from Alzheimer’s disease and eventually starting her company Aging in Place, USA. Get out a pen and paper: this episode is loaded with ideas for changes you can make to your home if you want to age in place safely and comfortably.
Learn more about Dale’s company: www.aginginplaceus.com
Get in touch with Dale: info@aginginplaceus.com
Music: “Always Late” by Ketsa | CC BY NC ND | Free Music Archive
For many lesbian, gay bisexual or transgender (LGBTQ) older adults the thought of moving into a long-term care facility means denying your identity and going right back into the closet. One person working to change that is Cliff Alburger, the first LGBTQ Chaplain Resident at Hebrew Senior Life (HSL), which provides daily care for 3,000 elders across nine campuses in the greater Boston area. On the show Cliff talks about how he and his team carry out their mission of creating a welcoming environment to ensure LGBTQ residents are able to live out their golden years on their own terms. He talks about training staff who genuinely want to know how to respectfully interact with LGBTQ elders, and about the surprising conversations he’s had with folks in their 80s and 90s in HSL’s pre-dominantly straight population. Cliff also talks about some of HSL’s senior initiatives, and he provides tips on what LGBT elders and their family members should look for when researching long-term care facilities. Cliff Alburger has a Master of Divinity degree from Harvard Divinity School.
Learn more about HSL’s LGBTQ Seniors Initiative: https://bit.ly/2y1Zc5s
HSL Blog on the Spiritual Care of LGBT Elders: https://bit.ly/2IEu5Be
Music: “I Can See Daylight Again” by Dlay | CC BY NC ND | Free Music Archive
Writer Ann Campanella was 33 years old and hoping to become a mother when her own mother began showing signs of Alzheimer’s disease. As her mother declined, Ann suffered a series of miscarriages that compounded her feelings of grief for the mother who was slipping away from her. On the show Ann talks about her experience, captured in her memoir “Motherhood: Lost and Found.” She tells us how she got through the long stretch of grey days caring for her mother at a time when her friends were caring for their own kids, about the painful experience of taking her mom to Duke University Medical Center and why she’s reaching out to people in similar circumstances. Ann is actively involved with AlzAuthors, which works to raise awareness, reduce stigma and lend support to people whose lives have been touched by dementia.
Explore Ann’s website: http://anncampanella.com
Amazon page, “Motherhood: Lost and Found”: https://amzn.to/2NClNQ2
Learn more about AlzAuthors: https://alzauthors.com
Music: “Growing Silence” by Ketsa | CC BY NC ND | Free Music Archive
For the past six years cartoonist Sharon Rosenzweig has been making comics about her mother and what Sharon refers to as their “adventures with Alzheimer’s Disease.” When her mother entered hospice, Sharon’s daily practice of drawing her and her caregivers became a way to connect with her when other forms of communication were lost. But after her mother died, Sharon found it impossible to continue drawing. She found the way back to her art through a warm-up ritual suggested by the cartoonist Lynda Barry. On the show Sharon tells us about that ritual, how it helped her grieve and how anyone with an interest in drawing can begin making a comic. She shares the story behind some of her comics, including “Mom’s Flock,” “Judgment Call” and “The Last Ride of Mo Rosenzweig,” all of which appear in the Annals of Internal Medicine. Sharon’s work is part of a movement called Graphic Medicine, defined as the use of comics to tell stories about illness and health. Her graphic memoir, based on her drawings about and with her mother, has the working title “Spiral Notebook.”
Link to Sharon’s comics in Annals of Internal Medicine: https://bit.ly/2OcIR3V
Sharon’s spiral drawings: https://bit.ly/2NyCTNN
Also mentioned in the show:
“The Comic Torah: Reimagining the Very Good Book”: https://amzn.to/2MzBQc3
“Syllabus” (Lynda Barry): https://amzn.to/2NgxfRd
Music: “Dryness (wet mix)” by Ketsa | CC BY NC ND | Free Music Archive
Self-care gets a lot of play in the media, but the truth is we’re all connected and the practice of care involves many people, especially in times of crisis. In today’s show we talk with media scholar and veteran journalist Dr. Sherri Williams about her piece for Elle digital magazine titled, “It Takes a Squad to Care for an Elder.” Sherri describes how—in the midst of earning her PhD—she dropped everything and traveled to Michigan to be with her grandmother, a news junkie and fan of Jay-Z whose health took a turn for the worse when she was diagnosed with pancreatic cancer. She talks about her family’s response to her grandmother’s impending death, how her last days changed Sherri and what she learned that others may find helpful. We also dip into some of Sherri’s other work, hearing her views on immigration and the care workforce. Dr. Sherri Williams is an assistant professor in race, media and communication at American University. Note: this episode originally aired August 10, 2017.
Read Sherri’s article for Elle.com: https://bit.ly/2p4GjtU
Sherri’s website: http://sherriwilliamsmedia.com
Music: “Save One Another” by Dlay | CC BY NC ND | Free Music Archive
Rx4good President Ann Moravick expands on her piece for Forbes digital magazine titled, “What’s Love Got to Do with It? When Caring for a Business and Caregiving Converge.” Ann’s parents were in good health into their nineties, but in the summer of 2017 her mother was hospitalized three times and her father underwent a cardiac procedure that ultimately led to his death. She explains why becoming a caregiver was as daunting, if not more, than starting her own business, and tells us how caring for her parents changed her relationship with them and what she learned from her caregiving experience. Ann also talks about the challenges and promises of healthcare today and the work of her company Rx4good, whose goal is to help companies make sure they listen to patients and caregivers when they’re developing clinical trials and support programs, or anything meant for the patient or caregiver.
Learn more about Rx4good: http://rx4good.com
Ann’s piece for Forbes: https://bit.ly/2PLBP7w
Also mentioned in the show: National Alliance for Caregiving: https://www.caregiving.org
Caregiver Action Network: http://caregiveraction.org Ideo: https://www.ideo.com
Music: “UpUpUp and Over” by Blue Dot Sessions | CC BY NC | Free Music Archive
Award-winning author and illustrator Marissa Moss is best known for her popular “Amelia’s Notebooks” series. She took a radical departure from that series with her novel, “Last Things: A Graphic Memoir About ALS,” a deeply personal story of how Marissa coped with the devastating effects of her husband Harvey’s illness. A renowned art historian and UC Berkeley professor, Harvey Stahl died less than seven months after being diagnosed with Bulbar ALS. On the show Marissa describes the novel's evolution and tells us why she was determined to show the full effects of Harvey's illness, from being stared at in public because of how he looked and the reaction of her sons (14, 10 and 6 when Harvey died) to her frustration with medical professionals and even her beloved husband. She reads a passage from “Last Things,” and explains how magic paperclip bracelets helped her youngest son, Asa, get rid of his nightmares. Marissa's novel sits squarely in the Graphic Medicine movement, which explores the medium of comics and the discourse of healthcare. Learn more about Graphic Medicine by exploring this year's conference in Vermont: https://bit.ly/2JIME7b.
Note: this episode originally aired September 14, 2017.
Marissa’s website: https://www.marissamoss.com
“Last Things” website: https://www.marissamoss.com/last-things.php
Music: “Growing Silence” by Ketsa | CC BY NC ND | Free Music Archive
Best-selling author Marita Golden talks about her novel “The Wide Circumference of Love,” in which the real-world impact of Alzheimer’s disease on the African-American community is woven into a fictionalized story. Marita tells us how writing the novel turned her into an Alzheimer’s activist. She ponders some big questions about how the disease is changing America and she shares some alarming facts, uncovered during her research for the book, about the impact of Alzheimer’s on communities of color. Born and raised in Washington, DC, Marita also talks about the colorful, pre-gentrified neighborhood of her youth and growing up on the same block where famed Harlem Renaissance writer Jean Toomer spent his childhood. Note: this episode originally aired on November 16, 2017.
Marita’s website: http://bit.ly/2igYwBk
Connect with Marita on Facebook: http://bit.ly/2iVKLrp
Find her book on Amazon: http://amzn.to/2jqBKdW
Music: “Lakeside Path” and “Delicious” by Blue Dot Sessions | CC BY NC | Free Music Archive
Dr. Maxine Borowsky Junge, artist, psychotherapist and co-author of the book, “Dear Myra, Dear Max: A Conversation About Aging,” returns to the show to talk about what she discovered on a trip to upstate New York where—with her adult children in tow—she visited three living communities designed for older adults. Now 80 years old and living alone on Whidbey Island (WA), Max can’t afford to stay in her house much longer but she’s determined to fulfill her priorities for the next stage of her life. She tells us how she decided which communities to visit and what sort of questions she asked of the marketing people she met with, including how they treat dying and death at their communities. Max also talks about how her kids participated in the adventure and reacted to the communities. She offers her thoughts on ageism and how adult children can maintain a healthy attitude toward aging parents.
Click here to listen to our previous interview with Max Junge: https://bit.ly/2KwQwsE
Check out the book, “Dear Myra, Dear Max”: https://bit.ly/2EFgyWx
Music: “Turning On The Lights” by Blue Dot Sessions | CC BY NC | Free Music Archive
Executive Director Joe Carella of the Scandinavian Charitable Society of Greater Boston talks about how his accidental placement in a geriatric hospital ward as a teenager sparked his passion for community-centered living: a commonsense approach to aging where older adults in residential facilities are connected to the larger community through events and programs at the facilities that anyone can choose to participate in. Joe’s passion was stoked on a research trip to Scandinavia, where he visited several facilities for older adults in search of alternatives to caring for America’s aging population. He later oversaw the design and development of the Scandinavian Living Center in Newton, Massachusetts, an assisted-living community that welcomes over 2,000 visitors a month and is based on the principles in Joe’s book, “Creating Unlimited Options for Aging: The Path Forward.” Joe tells us why institutional housing for older adults is outdated and even club-like communities for older adults, like The Villages in Florida, are unhealthy. He makes clear that community-centered living isn’t a marketing concept, but a gathering concept.
“Creating Unlimited Options for Aging”: https://amzn.to/2KOGRkQ
Scandinavian Center for Living: www.slcenter.org
Also mentioned in the show:
Leonard Florence Center for Living: https://bit.ly/2m4Rwcu
Elizabeth Seton Residence: https://www.elizabethseton.org
Music: “Our Names Engraved” and “Jog to the Water” by Blue Note Sessions | CC BY NC | Free Music Archive
Canadian photographer Jay Perry was thirty-one years old when his father was diagnosed with terminal lung cancer. Jay’s business was just taking off, with a portfolio that included artists Snoop Dogg, Usher and Gwen Stefani, but he decided to stop working and move in with his parents to help care for and spend time with his dad. On the show he talks about the experience chronicled in his book, “My Dad Got Sick: Love and Insights From a Caregiver’s Unexpected Journey Through Cancer.” Jay tells us why it was all worth it, but also frankly shares his anxiety about being in debt from taking two years off from work, why he made himself vulnerable by sharing his cancer journey with his dad on social media and why he didn’t take a lot of photos or make any videos of his dad before his death. Told he had nine months to live, Jay’s father continued to baffle doctors two years after his diagnosis. Jay also tells us about his mission trip to Haiti and “Kettenie-Love,” a photograph he took during the trip that changed both Jay’s life and the little girl in the photo, and about his project Friends With Hearts.
To purchase a transcript of this episode please visit this page: Transcripts
Explore Jay’s book, “My Dad Got Sick”
Jay’s website
The story behind “Kettenie-Love”
More about the project Friends With Hearts
Music: “Melancholia” by Dlay | CC BY NC ND | Free Music Archive
Licensed Clinical Social Worker Jennifer Schosheim is one of America’s low-profile but critical pieces of the healthcare puzzle delivering person-centered care outside the operating room. In today’s show, Jennifer tells us about her work counseling cancer patients and their caregivers, including parents of children who don’t know how to talk to their children about mom or dad’s cancer. A millennial in her early thirties, Jen has had conversations both with her patients and her parents about end-of-life issues. She tells us how to start the conversation, provides listeners with coping strategies and tells us what she does to seek balance in her own life amid the difficulties of her work. A Boca Raton, Florida native, Jen’s passion for oncology social work was sparked at a hospital in New York City, where she lived for several years before returning to Florida to be closer to her family.
Get free one-on-one support through the Cancer Hope Network: https://bit.ly/2I7jG
American Cancer Society: https://www.cancer.org
Lift chair recliners: https://amzn.to/2tcX8VN
Contact Jennifer: jen.schosh@gmail.com
Music: “Dryness (wet mix)” by Ketsa | CC BY NC ND | Free Music Archive
Director and Creator Nell Bang-Jensen talks about her play “The Caregivers,” created in collaboration with Philadelphia-area home health aides, hospice workers and family caregivers, several who performed in the play. Part fantasy, part reenacted stories based on the caregivers’ experiences, the social practice performance piece recently ran at Philly’s Pig Iron Theater Company where it sold out all shows. Nell tells us what was fun and what was challenging about creating the piece, why it was important for her to pay the caregivers who performed in the show and how the audience responded. Her current focus: finding the next artistic home for “The Caregivers” now that the run has ended.
This episode is a follow-up to an earlier conversation with Nell; if you missed it, tune in here: https://bit.ly/2DMlRqK.
Learn more about “The Caregivers” - https://nellbangjensen.com
Watch the play’s post-show Q&A: https://bit.ly/2HPN9dA
Music: “Astrisx” by Blue Dot Sessions | CC BY NC | Free Music Archive
In his new Young Adult (YA) novel, “No Sad Songs,” author Frank Morelli explores youth caregiving through the character Gabe LoScuda, an eighteen-year-old thrust into the role of caregiver for his grandfather when tragedy strikes the family. Gabe’s grandfather is a World War II veteran who has Pick’s disease, a form of dementia similar to Alzheimer’s. On the show, Frank tells us how watching his parents care for his own grandfather influenced the novel and about the deep impression left on him as a teenager witnessing the effects of his grandfather’s dementia. He talks about the humor, poetry and baseball woven into the novel, and about its big theme of repaying a debt. When he’s not writing Frank teaches eighth graders in Greensboro, North Carolina; although his goal with “No Sad Songs” was to connect with students everywhere on the issue of caregiving, he was especially pleased when one of his students arrived in class not with Frank’s book but with a book of Robert Frost poems.
Frank’s website: https://frankmorelliwrites.com
Connect with Frank on Twitter: @frankmoewriter
Connect on Facebook: https://bit.ly/2JkcaPM
Resources for youth caregivers: http://aacy.org
More about Pick’s disease: https://bit.ly/2JygWwg
Music: “Arashi” by Kakurenbo | CC BY NC | Free Music Archive
Why are conversations about death so hard? And how can we learn to say goodbye in a healthy way? Author Julie Saeger Nierenberg explores these and other tough questions in her book “Daddy, This Is It: Being-With My Dying Dad.” On today’s show, Julie tells us how her father’s terminal cancer forced her to confront a host of end-of-life issues and led her to think differently about hospice care. She tells us why she believes the last chapter of life is as important as each chapter along the way, and about how she learned to say goodbye to her father in a healthy way in the last days of his life. Note: this episode originally aired March 9, 2017.
Julie’s latest book, “Journey’s End: Death, Dying and the End of Life” is available here: https://amzn.to/2x1sbsj
Explore her book, “Daddy This is It”: https://amzn.to/2mpE9V1
Julie’s website: https://bit.ly/2KMqD7c
What is metastatic cancer? https://bit.ly/2KLDK8P
Music: “Always Late” by Ketsa | CC BY NC ND | Free Music Archive
Filmmaker and visual journalist Sky Dylan-Robbins talks about her documentary short for NBC Left Field, “Millennials Stepping Up: How Will We Take Care of Our Parents?” At this pivotal moment in society, where in the next thirty years the population of Americans over age 65 will double, the video poses the question: Where do millennials fit in? It’s a topic that feels close to home for 29-year-old Sky; besides being intimidated by the prospect of preparing for her own aging, Sky wants make sure her mother is well cared for as she ages. Sky Dylan-Robbins is the founder of The Video Consortium; in In 2018, she was chosen as one of Forbes Magazine's “30 Under 30” in Media.
To purchase a transcript of this episode please visit this page: Transcripts
Millennials Stepping Up (NBC Left Field)
Sky’s website
Check out The Video Consortium
Music: “Floppy Memories” by Dlay | CC BY NC ND | Free Music Archive
In 2007, television, film and social media producer Jen Vargas made a short film for Relay for Life, the signature fundraiser for the American Cancer Society. A year later, the economy tanked and so did Jen’s career. Then her mother was diagnosed with stage one uterine cancer. Jen moved in with her mother and became her full-time caregiver, shepherding her through daily chemotherapy sessions when her mom (Pam) was later diagnosed with breast cancer. In today’s show Jen tells us what she’s sacrificed for the mom she calls her hero, why she started the #HiPam Twitter campaign and how her mother has inspired others. She reflects on the value of wandering around big box stores and finding like-minded friends who can help you out, and she tells us where her mom—who is recovering well—needs to be health-wise for Jen to feel comfortable taking a job out of state. Though Jen’s life is in many ways still on hold, she works on local film productions and has made some short films of her own. Three years ago, she became the first female Latina host of FilmSlam at Enzian Theater, a monthly competition featuring student, independent, low-budget and no-budget short movies made by Florida filmmakers. Tune in and get inspired.
Jen Vargas on Twitter: https://twitter.com/jenvargas
Facebook page for FilmSlam at Enzian Theater - https://bit.ly/2FZTlyV
FilmSlam ticketing: https://enzian.org
Jen’s short film “Relay For Life: St. Cloud” - https://vimeo.com/2734031
80-year-old Dr. Maxine Borowsky Junge explains why she co-wrote “Dear Myra, Dear Max: A Conversation on Aging” with her friend and colleague Dr. Myra Levick, who at age 93 now lives in an independent living community in South Florida while Max lives alone on Whidbey Island in Washington state. Born and raised in Los Angeles during the Hollywood Blacklist period, Max moved to Whidbey after retiring from Loyola Marymount University, where she was a faculty member and Chair of the Marital and Family Therapy/Clinical Art Therapy Department. In the show Max confronts aging stereotypes, she tells us why she has a problem with senior communities, why “life review” isn’t satisfying for a lot of older adults and why she gave up mirrors. Tune in for a compelling interview with this fierce, accomplished woman as she contemplates the next phase of her aging journey, which will involve leaving Whidbey Island but continuing to write and produce art.
To purchase a transcript of this episode please visit this page: Transcripts
Explore the book: “Dear Myra, Dear Max”
Also mentioned in the show: Rollo May
Rudolph Steiner Inter-Generational Care Community
Music: “Discovery” by Jon Luc Hefferman | CC BY NC | Free Music Archive
President Trump’s nominee to lead the Veterans Affairs Department, Dr. Ronny Jackson, just withdrew his name from consideration. But as the VA remains leaderless, the needs of military veterans and their families continue to mount. In today’s show we revisit an interview with Rosalinda Babin, the mother of one of those military veterans. Rosie’s son, Alan “Doc” Babin, sustained a near-fatal gunshot wound serving on the front lines as a paratrooper medic in the Army’s elite 82nd Airborne Division. Rosie shares the powerful story of how Doc clawed his way back to life after his catastrophic injury, how her family’s life changed and how advocating for Doc affected her own health. She also tells us about Help Our Wounded (HOW), the non-profit she founded, which grew out of her experience with Doc during his seven-month stay at Walter Reed Army Medical Center, where Rosie saw firsthand the many roadblocks military members faced in trying to get veterans benefits, and about how—fourteen years after his injury—her son Doc has defied medical expectations. Note: this episode originally aired August 17, 2017.
After eight years of service, HOW recently and reluctantly closed its doors; if you need help now, Rosie urges you to visit the National Resource Directory https://nrd.gov.
Music: “Burning Light” by Ketsa | CC BY NC ND | Free Music Archive
In an era when women were often defined by the work of their husbands, art psychotherapist Dr. Myra Levick earned three degrees, she helped found the American Art Therapy Association and she developed the widely-used Levick Emotional and Cognitive Art Therapy Assessment (LECATA). Now 93 years old, Myra recently co-authored the book “Dear Myra, Dear Max: A Conversation About Aging” with her longtime friend and colleague, 80-year-old Dr. Maxine Junge. In today’s show Myra talks about the book and about finding her way in a male-dominated professional world long before the birth of “Ms. Magazine.” She tells us why she declined the offer to live with her adult children after her husband’s death and about her life in an independent living community where she paints, edits a resident journal and has a group of friends who have become her surrogate family. Myra weighs in on how her generation is experiencing the aging process, she debunks some myths about post-75-year-olds and she tells us about her daughters, who are accomplished in their own rights and actively engaged in Myra’s life.
“Dear Myra, Dear Max" website
Also mentioned in the show:
“Being Mortal” by Atul Guwande
National League of American Pen Women: NLAPW
Juvenile Law Center: JLC
Music: “Turning On The Lights” by Blue Dot Sessions | CC BY NC | Free Music Archive
Los Angeles-based writer Lauren DePino has always had a soft spot for older adults. The death of her beloved grandmother hit her especially hard, but Lauren didn’t realize how hard until years later when she met 91-year-old Gloria Kessler, the grandmother of her ex-boyfriend’s wife. In today’s show, Lauren tells us about the weekend getaway to San Diego that began her unexpected friendship with Gloria and why meeting her felt like finding her grandmother all over again. She shares her story of escorting Gloria on a flight east at Thanksgiving, she tells us how people react to seeing them together and how Gloria wound up taking care of Lauren when Lauren was supposed to be caring for Gloria. Lauren wrote about her experience in an article for The Washington Post titled, “I Became Friends With My Ex‘s Grandmother-In-Law” (link below).
Article for The Washington Post
Lauren’s website
Music: “Welcome Home Sonny” by Blue Dot Sessions | CC BY NC | Free Music Archive
Lisette Carbajal was sitting in her dorm room at the University of Virginia when her mother called, crying as she told her Lisette’s father had been diagnosed with Alzheimer’s disease. In that moment Lisette—the daughter of Peruvian immigrants who speak little English—knew her future would be very different from that of most of her fellow students. In today’s show, Lisette talks about how her career and first big job working for former VA Governor Terry McAuliffe were shaped by her caregiving responsibilities and sense of obligation to her hard-working parents. She tells us what she’s learned from juggling her education and work with caring for her father, she talks about her work as an Alzheimer’s advocate and she tells us why well-meaning articles with advice on how to prepare for your future aren’t much help for millennials. With her wedding imminent, Lisette is preparing for the reality that this special day is unlikely to include her father.
Find support: Support
USC /UsAgainstAlzheimer’s study: study
UsAgainstAlzheimer’s
Music: “Spirit Body” by Ketsa | CC BY NC ND | Free Music Archive
James Ciervo is the Regional Chapter Director (New York) of the Twilight Wish Foundation, a national organization in the business of making older adults happy. On the show today, he talks about the range of wishes granted by the Foundation, from providing a stair lift or a hearing aid to an older adult to celebrating older veterans, granting LGBT senior wishes and fulfilling an older adult’s dream to fly in a fighter jet. A lifelong healthcare worker who specializes in senior therapeutic recreation, James also tells us how his early days as a hairdresser sparked his dedication to older adults—starting with an 84-year-old client he transported from her home to the salon—and how it led to his career at a nursing home where the residents have become like family. He tells us how a trip to Thailand influenced his views on American healthcare, how his mother’s cancer led to his working briefly with the American Cancer Society and about the loss of his partner and his mother, each of whom James is honoring by granting Twilight wishes on their behalf.
Want to request or grant a wish for a senior? Click here
Twilight Wish Foundation Headquarters: 215-230-8777.
Music: “I Can See Daylight Again” by Dlay | CC BY NC ND | Free Music Archive
“Abe and Phil’s Last Poker Game” is the rare Hollywood movie that explores the subject of aging through characters that are neither pitiable nor put on a pedestal. Charming, funny and brutally honest, it stars Paul Sorvino as a womanizing gambler and the Oscar-winning Martin Landau as a retired heart surgeon who moves into a nursing home with his ailing wife. The film was Landau’s last before his death shortly after it premiered at the 2017 Tribeca Film Festival. In today’s show, we talk with writer/director Dr. Howard L. Weiner, a renowned neurologist, Harvard Medical School professor and Co-Director of the Ann Romney Center for Neurologic Diseases at Brigham & Women’s Hospital who undertook this film project at age 70. Weiner tells us why he made the film, how it came together and what it was like working with the legendary Landau. He also talks about some of his non-film projects involving Alzheimer’s and cancer research, ideas he’s developing for future films and why he believes it’s never too late for life.
Website for the film: Last Poker Game
Watch the trailer
More about Dr. Howard L. Weiner
Music: “Turning On The Lights” by Blue Dot Sessions | CC BY NC | Free Music Archive
Not one of us knows what it's like to be old until we get there. So says 76-year-old Ronni Bennett, a former radio producer who also spent over 25 years as a writer and producer in network television in New York and was managing editor of the first CBS news website. These days Ronni is busy with her acclaimed blog "Time Goes By," where she explores aging with humor, compassion and uncommon candor. In today's show, Ronni talks about the evolution of her blog and she tells us what's good about getting older. She weighs in on the eTrade Super Bowl ad featuring older adults and how media fuels America's rampant ageism, she tells us why she decided to write about her diagnosis of pancreatic cancer and why she was hit hard by the recent Op-Ed piece, "Am I Going Blind?" by New York Times writer Frank Bruni. Tune in for some real talk on aging from a straight shooter who lives with uncertainty, with grace and humor.
To purchase a transcript of this episode please visit this page: Transcripts
Ronni's website
"Am I Going Blind?" by Frank Bruni (2/23/18)
Ronni's blog piece in response to the Bruni piece
When it comes to aging parents, working daughters often feel they have to choose between being a good employee and being a good daughter. After her father died Illinois resident Maggie McClane chose to be a good daughter: she left her job as a paralegal and moved in with her 89-year-old mother to provide her with 24/7 care. Maggie's mom has Alzheimer's disease, is nearly blind because of macular degeneration and also has severe vertigo from a stroke. In today's episode we catch up with Maggie after speaking with her nearly a year ago. Maggie talks about the odd experience of having the house to herself now that her mom is in rehab, how she deals with second guessing from her non-caregiver siblings and why it no longer bothers Maggie that her mom isn't always plugged into reality. She also talks about her fears of financial insecurity as she ages, her strategy for getting back to paid work and how she'll deal with the pressure of vacating the house after her mother dies. She tells us what's good in her life, what she still struggles with and how her attitude has changed in the four years she's lived with and cared for her mom.
Listen to our previous interview with Maggie
Memorial Care Center (facility mentioned in the show)
Music: "Upbeat" by Jon Luc Hefferman | CC BY NC | Free Music Archive
Canadian author and illustrator Kathryn Harrison created her picture book “Weeds in Nana’s Garden” to help children who have family members with dementia understand and be aware of the disease. She created the book after her mother was diagnosed with Frontotemporal Dementia (FTD) and Kathryn’s children began asking questions about their grandmother’s odd behavior. On the show Kathryn talks about the healing properties of art, how her life changed as her mother declined and what her children learned from being involved in their grandmother’s care. She also shares how her daughter’s friends at school got involved in the process of creating “Weeds.” Note: this episode originally aired September 8, 2016. Since then Kathryn’s book has also been published in French, German and Portuguese. Proceeds from the book go to support the Alzheimer Society of Canada.
Website for “Weeds In Anna’s Garden”: Weeds
Explore Kathryn’s personal website
Learn more about FTD
Music: “Tomoshibi” by Kakurenbo | CC BY NC | Free Music Archive
The challenges of his political career were nothing compared to the steep learning curve faced by former Wisconsin Governor Martin J. Schreiber when his wife Elaine was diagnosed with Alzheimer’s disease and he plunged into the role of spousal caregiver. In today’s show, Marty shares his harrowing climb up the rocky Alzheimer’s mountain and he discusses his book, “My Two Elaines: Learning, Coping, And Surviving As An Alzheimer’s Caregiver.” From what he learned in counseling to the value of therapeutic fibbing and why ignorance of Alzheimer’s is worse than the disease itself, Schreiber offers sage advice for his fellow caregivers and a rallying cry for policymakers to address the looming crisis of dementia care. Note: this episode originally aired February 23, 2017.
“My Two Elaines” website
“Living With Alzheimer’s” by Martin Schreiber, Milwaukee-Wisconsin Journal Sentinel (12/26/16):
Alzheimer’s 24/7 Hotline – 800-272-3900
Dr. Samuel Harrington's father had a vision of how he wanted to experience the last days of his life. That vision led Dr. Harrington and his sisters to help their father make end-of-life decisions based on the exit strategy he wanted. It also inspired Harrington's new book, "At Peace: Choosing a Good Death After a Long Life," a practical and compassionate road-map for facing critical end-of-life decisions. In today's show, Dr. Harrington talks about issues raised in the book, which combines the story of his father's decline and death with a discussion of disease in the elderly. He tells us why, if you want to die at home, it's essential to understand when it's appropriate to say no to hospitalization, he explains how advertising promotes magical thinking about miracle cures and he breaks down some commonly used medical terms. Dr. Harrington shares examples of how the momentum for treatment in medicine can lead to negative outcomes in elderly patients, which could have been prevented, he talks about his own evolution as a physician and he tells us why he chose to go public with his opinions that challenge the medical establishment.
"At Peace: Choosing a Good Death After a Long Life": http://amzn.to/2BFigWf
Dr. Harrington's website: https://samharrington.com
Check out Sam and his wife Debbie's blog: http://gapyearaftersixty.com
Music: "Dryness" by Ketsa | CC BY NC ND | Free Music Archive
Theater artist, writer and educator Nell Bang-Jensen believes that instead of staging big shows on a main stage, theater producers might better serve their communities by finding out what people in the community are interested in and engaging them in the artistic process. That's the idea behind a new work in development at the Pig Iron Theater Company, where Nell is the Associate Artistic Director. In today's show she talks about "The Caregiver Project," a performance piece being shaped by caregivers in the Philadelphia area who are collaborating with Pig Iron, sharing their experiences with care and helping to create a show that opens in June. Nell also talks about her first real exposure to end-of-life issues through the hospice journeys of her Danish grandparents, what she hopes the audience will take away from "The Caregiver Project" and how creating the work has challenged her to represent caregiving in an accurate way while also devising a compelling artistic piece.
To purchase a transcript of this episode please visit this page: Transcripts
Learn more about The Caregiver Project
Mentioned in the show:
"The Commercialization of Intimate Life" by sociologist Arlie Hochschild
Music: "Always Late" by Ketsa | CC BY NC ND | Free Music Archive
After ten years of caring for three different family members who died four months apart, Andrea McMillan woke up to the realization that she was no longer responsible for the well-being of anyone but herself and her healthy daughter. On today’s show, Andrea talks about life after caregiving, or what she describes as emerging from a coma, from expanding her wardrobe beyond the same few outfits worn day in and day out and pursuing dormant passions, to carving out a new identity for herself, exhaling and learning how to laugh again. Andrea also talks about the brother who was checked out during her caregiving decade, how her attitude toward him has changed and how she continues to evolve on her journey of rediscovery.
Note: this episode is a follow-up to our interview conducted with Andrea in May 2016. If you missed it, check it out here: http://bit.ly/1SPlyfb
Music: “Wounds” (remix) and “Falling Sky” by Ketsa | CC BY NC ND | Free Music Archive
In her new book, “Role Reversal: How To Take Care Of Yourself And Your Aging Parents” author Iris Waichler combines practical advice for caregivers with her personal story of caring for her father, a colorful World War II veteran who died at age 97. Iris brought forty years of experience as a licensed clinical social worker to the task of caring for her dad, peppering medical staff with questions based on her insider’s view of how hospitals work, collaborating with her dad on choosing an assisted living facility for him, even setting him up with an age-appropriate social group after he started hanging out in bars, years after his wife died of cancer. In today’s show, Iris offers professional tips on how to navigate the medical system, family relationships and end-of-life challenges. She talks about her dad's autobiography and explains why it's beneficial for older folks to share their history, and she tells us about the emergency phone call that cut short her trip to Greece. She also shares some surprising discoveries made while writing her moving and useful book.
Explore Iris’ website: https://iriswaichler.com
Check out her book, “Role Reversal”: http://amzn.to/2qTyqv1
Music: “Cases to Rest” and “Astrisx” by Blue Dot Sessions | CC BY NC | Free Music Archive
Loretta Veney’s greatest fear is that her mother will outlive her money. Her great grandmother lived to age 107 and her grandmother to age 98. Neither had dementia. But Loretta’s mother was diagnosed with Alzheimer’s disease at age 77. In today’s show, Loretta talks about journeying with her mother through Alzheimer’s and about her book, “Being My Mom’s Mom.” She describes the hilarious, poignant tale of her mother’s escape from her group home and the “earthly angels” who helped return her to safety, how she adapted to her mother’s reading aloud phase and the grocery store drama that led to a customer pleading with Loretta for help managing her anger issues with her mother. Loretta also talks about her husband’s death, coping with loss and why Lego bricks play a key role in her caregiver training. Tune in for an inspiring conversation with this fifth generation Washingtonian. Note: this episode originally aired May 18, 2017.
Loretta’s website and book: http://bit.ly/2qtgp4E
Washington Post article about Loretta and her mom: http://bit.ly/2Dhv2LI
NY Times Article: http://nyti.ms/2C8LTRK
Documentary on Alzheimer’s (Loretta/Mom are 15-1/2 minutes in): https://youtu.be/CcBH077AEm8
RoadID Medical Bracelet: http://bit.ly/2qT02zQ
Music: “Even When We Fall” by Philipp Weigl | CC BY | Free Music Archive
Twenty years ago, when author Joy Loverde began thinking about writing her new book, “Who Will Take Care of Me When I’m Old?” the timing wasn’t right. Back then people were still grappling with the concept of elder care, and Joy’s book “The Complete Eldercare Planner” was a go-to guide for caregivers. But now, she tells us, we’re more “settled” around elder care and the timing for “Who Will Take Care of Me When I’m Old?” is perfect. Joy has spent a lifetime interacting with thousands of experts—old people themselves. Her new book is all about creating a plan for living the life you want for as long as possible. Tune in as Joy Loverde talks about this engaging, step-by-step guide to creating a quality life in old age.
Amazon link to “Who Will Take Care of Me When I’m Old?”: http://amzn.to/2ztC1Dl
Connect with Joy: https://www.elderindustry.com
Twitter: https://www.twitter.com/joyloverde
Music: “Flower Drops” by Dlay | CC BY NC ND | Free Music Archive
Former Ohio state trooper Matt Gurwell talks about his organization Keeping Us Safe and the Beyond Driving With Dignity self-assessment program he created as a proactive measure, after spending years as a trooper delivering bad news to family members about accidents involving older drivers. He tells us how sibling relationships are torn apart over a parent’s driving in later years, why some older drivers are better than others and why having the older driver make the decision about when to give up the car keys is a big part of how his team convinces the driver to do so. Matt also talks about the connection between exercise and safe driving, he explains how handicap parking spots actually increase accidents and he offers tips on how to evaluate and implement a program to keep your family safe. He tells us why he dreads having the conversation with his own father about giving up the car keys, and he ponders how it will work for him when he has to give up driving after spending so much time on the road as a trooper.
To purchase a transcript of this episode please visit this page: Transcripts
Learn more : Keeping Us Safe
Music: “Growing Silence” by Ketsa | CC BY NC ND | Free Music Archive
As the Trump administration rolls out its plan to deal with the opioid crisis, author and radio host Peter Rosenberger wants to know why caregivers have not been invited to the table. Thirty-plus years of handling medications prescribed for his wife’s chronic pain have convinced him this public health emergency goes beyond people buying drugs on the street: it is rampant in the world of care. In today’s show, Peter explains how opioid abuse intersects with caregiving, why he calls himself the “crash test dummy of caregivers” and what he’s learned from caring for his wife, Grace, a double amputee. He tells us why he’s on a mission to strengthen his fellow caregivers and offers practical advice for coping, how he “works out the kinks” in his soul while caring for Grace and about the prosthetic limb ministry he started called Standing With Hope.
Peter’s Op-Ed, “Caregivers need help navigating the opioid crisis” (Washington Examiner, 11/12/17): http://washex.am/2hwXFQ2
Peter’s website: https://www.Caregiverswithhope.com
Standing With Hope: http://standingwithhope.com
Music: “Into the Woods” by Dlay | CC BY NC ND | Free Music Archive
When her mother was diagnosed with Huntington’s Disease, 29-year-old writer Melissa Bilchik had to decide whether she too should be tested: there was a 50/50 chance Melissa was carrying the gene for this progressive brain disease. In today’s show, Melissa talks about the events leading up to her mother’s diagnosis of HD—which she says is like having Alzheimer’s and Parkinson’s simultaneously—caring for her mom, her views on getting tested and her approach to having kids. She also talks about how millennial caregivers differ from baby boomer caregivers, her experience of support groups and why she’s not a Pinterest mom. Note: today's episode was originally broadcast April 27, 2017. We have an update on Melissa and her family at the end of the show.
Melissa’s blog: https://grownuppains.com
More about Huntington’s Disease: http://bit.ly/1GrrvED
Google Hangout for young caregivers (mentioned in the show): http://bit.ly/2ppZVtU
Music: “Arashi” by Kakurenbo | CC BY NC | Free Music Archive
It’s open enrollment season in the United States, so if you need to sign up for an individual health insurance plan through the Affordable Care Act (ACA) marketplace or you want to learn more about Medicare, Medicaid and long-term care, today’s show is for you. Our guest is Thad Hooker, an insurance agent and broker with the Assurance Group, who has worked in health care for over twenty years. Thad gives us an overview of the ACA marketplace plans, he tells us what to look for in choosing a plan and explains why one type of plan might be better for you than another. He also defines some confusing terms, talks about Medicare and Medicaid, dispels some major misconceptions about both programs, and he explains three different ways to accomplish the goal of having long-term care insurance. Get out your pen and paper, take notes and send us your questions and feedback so we can provide more information in a future episode: jana@agewyz.com.
Contact Thad: tnhooker@assuregrp.com | 954-854-1197 (cell phone)
Music: “Wandering Path” by Dlay | CC NY NC ND | Free Music Archive
Writing “The Wide Circumference of Love” turned best-selling author Marita Golden into an Alzheimer’s activist. In today’s show she tells us why and about the process of writing her novel, in which the real world impact of Alzheimer’s disease on the African-American community is woven into a fictionalized story. Marita shares some alarming facts, uncovered during her research for the novel, about the impact of Alzheimer’s on communities of color, she tells us how she was transformed by her experience of being embedded with the staff and residents of a memory care unit and she ponders some big questions about how Alzheimer’s is changing America. Marita also talks about the colorful, pre-gentrified Washington, DC neighborhood where she grew up, she offers some caregiver strategies gleaned from the writing of her book and she tells us about a new anthology project to raise funds for Alzheimer’s and dementia research.
Marita’s website: http://bit.ly/2igYwBk
Connect with Marita on Facebook: http://bit.ly/2iVKLrp
Amazon: http://amzn.to/2jqBKdW
Link to Washington Post Magazine article: http://bit.ly/2zZsuEF
Submit a short narrative for consideration in Alzheimer’s caregiver anthology: info@maritagolden.com
Music: “Tower of Mirrors” by Blue Dot Sessions | CC BY NC | Free Music Archive
During the making of her documentary film, “The Weight of Honor,” which profiles the caregivers of military veterans, Director/Producer Stephanie Seldin Howard told the production team to put their politics aside: the film was about the caregivers—not the wars in Iraq or Afghanistan or the shortcomings of the Veterans Administration. In today’s show Stephanie tell us why she took this approach, she shares some of the needs expressed by the military caregivers interviewed and tells us what motivated members of this otherwise closed community to participate in the film. She talks about some of the experts in the film, including Nathan Graeser, administrator of the USC Military Veterans and Research program, and Carissa Tourtelot, who coordinates the USMC Wounded Warrior Battalion. Stephanie also tells us how making “The Weight of Honor” changed her, what she wants viewers to take away from the film and she shares the inspirational story of how a catastrophically wounded soldier and his wife, who was pregnant when her husband was wounded, found their way back to a life of purpose.
Learn more about “The Weight of Honor” - http://bit.ly/2z1AcwY
Music: “Astrisx” by Blue Dot Sessions | CC BY NC | Free Music Archive
Google, Twitter, Facebook and Wikipedia didn’t even exist when Chicago native Denise M. Brown started exploring the idea of launching a website for caregivers the early 1990s. Everyone told her she was wasting her time: people don’t go online for the kind of information Denise wanted to offer. She launched CareGiving.com anyway, and today the website is a go-to destination for millions of family caregivers desperate for practical advice and encouragement. In today’s show, Denise talks about the origins of CareGiving.com, how the landscape of care has changed since she began working in the field 27 years ago and why family caregiver stress is an epidemic. She shares some lessons from caring for her own parents and explains why it’s important to document your caregiving experience in some way. Denise also tells us about NCC17, the upcoming National Caregiving Conference in Chicago, and how you can attend digitally if you can’t make it in person
To purchase a transcript of this episode please visit this page: Transcripts
Learn More: Caregiving.com
UPDATE: Since this episode aired, Denise sold CareGiving.com and has dedicated herself full-time to her new company Caregiving Years Training Academy, which provides training and certifications for family caregivers.
Music: “Halves And Quarters” by Dlay | CC BY NC ND | Free Music Archive
Irene Atkinson grew up in Texas, steeped in European culture: her parents spoke Polish in the house, and her family socialized in Houston’s large Polish-American community. But the family fabric was disrupted when Irene’s father died; several years later, her mother—a lifelong pre-school teacher—moved in with Irene because her mother was showing signs of dementia. In today’s show: how Irene, a stay-at-home mom, is adjusting to watching her kids grow and thrive while her mother goes in the opposite direction. Irene talks about how she and her husband manage privacy issues, the challenges she’s faced finding support services and the guilt-inducing experience of having her mom stay with her sister one day a week so Irene can get a break. A story of devotion, heartache and fortitude from Austin, Texas.
Music: “Wounds” (remix) by Ketsa | CC BY NC ND | Free Music Archive
News icon Walter Cronkite and the legendary photographer Gordon Parks are just two of over thirty famous and lesser known people interviewed by Elizabeth Meade Howard for her book, “Aging Famously: Follow Those You Admire To Living Long and Well.” A journalist and former lecturer at the University of Virginia (UVA), Elizabeth shares her experience of meeting her inspiring interview subjects—dignified, adventurous people who didn’t think of themselves as risk-takers but made a difference in the world. Though some of them are no longer living, Elizabeth explains why their lives still matter and what we can learn from them about living well in our older years. She tells us about the people in her own family who thrived in older age, including her beloved father, who continued to write books and teach at UVA for many years after Elizabeth’s mother died. Elizabeth also explains why she and her husband are staying put in their house of forty-seven years, how she feels internally versus what people see when they look at her and why it’s ridiculous to think older adults need to be put out to pasture.
Explore Elizabeth’s website: https://www.agingfamously.com
“Aging Famously” link: http://amzn.to/2yyQdb5
Music: “Hundred Mile” by Blue Dot Sessions | CC BY NC | Free Music Archive
Writer Brandi Neal was twenty-nine years old and living in Maine when she dropped everything and flew to Arizona to help care for her ailing father, a Vietnam War veteran who disappeared from Brandi’s life when she was twelve. In today’s show, Brandi shares her mixed feelings over caring for her father, the shock of seeing him deteriorate and how her brother—a heroin addict at the time—added to her stress. She also tells us why military benefits were crucial in helping her father and her grandparents, who transitioned to an expensive independent living residence after they could no longer live at home due to her grandmother’s Lewy Body dementia. Brandi talks about misconceptions people have about the younger generation, her concerns about how her own future care needs will be met and what she would have done differently in caring for her father. And then there is Brandi’s special needs dog, a beagle who has to sit in a high chair to eat but has no idea anything’s wrong with her.
“How To Care For Aging Relatives While Taking Care of Yourself” – by Brandi Neal; Bustle http://bit.ly/2h3P3Mf
Brandi’s website: https://brandineal.com What is megaesophagus? http://bit.ly/2yHU6gL
Music: “Mio” by Dlay | CC NY NC ND | Free Music Archive
As an elected official in Southern California, Hector De La Torre expanded access to doctors in underserved communities and he helped protect consumers from retroactive cancellation of their health insurance. Now Executive Director of the Transamerica Center For Health Studies, Hector joins us to share some startling findings from the Center’s just-released survey, “The Many Faces of Caregivers: A Close-Up Look at Caregiving and Its Impact.” He offers his perspective on why there’s such a big disconnect between public officials and caregivers who are desperate for resources to support their work, he explains how caregiving hurts the economy and what he’d like listeners and policymakers to take away from the Center’s survey of over 3,000 non-professional caregivers. Hector also shares how he juggled his work as an elected official with caring for his father, a job that fell to him as the sibling who lived closest to his dad.
Check out The Many Faces of Caregivers survey: http://bit.ly/2wZPaib
Learn more about the Transamerica Institute: http://bit.ly/2wvYT00
Music: “Cosmic Kitten” by Letmeknowyouanatole | CC BY SA | Free Music Archive
Pediatric and trauma nurse Tami Reeves talks about her memoir, “Bleeding Hearts: A True Story of Alzheimer’s, Family, And The Other Woman,” the candid story of a husband (Eric) torn between love for his ailing wife (Gaye) and the need to move on. Tami began dating Eric while his wife was still alive but rapidly declining from early onset Alzheimer’s disease. Alternately judged as the “other woman” and embraced for lifting Eric’s spirits and facing the challenges of grief, Tami regularly visited Gaye at her nursing home even as her love for Eric deepened. A Child Of Deaf Adults (CODA), Tami also talks about her early lessons in caregiving and how caring for others led her to play a significant role in caring for Eric’s wife.
Tami’s website: http://www.tamireeves.com
Link to “Bleeding Hearts” - http://amzn.to/2wS0qSt
Music: “With Night’s Cover” by Ketsa | CC BY NC ND | Free Music Archive
When we spoke with fine artist Tony Luciani in 2016, his then 93-year-old mother Elia, who has dementia, had recently moved in with him. Tony had just produced his book, “Mamma: In The Meantime,” a collection of photographs he’d taken of his mother, and while he juggled caring for her with making art, his mother began taking photographs with a point-and-shoot camera Tony bought for her, emerging as an artist in her own right. In today’s episode, Tony gives us an update on his and Elia’s life. He tells us how his work has changed since we spoke in 2016 and what his mother’s life is like now, and he offers his views on why his photographs of Elia continue to be popular (her image recently graced the cover of Proto Magazine, a Time, Inc. publication of Massachusetts General Hospital). Tony also talks about his and Elia’s dual exhibition at Ontario’s Durham Art Gallery, and what he wants people to see in his photographs of his mother.
Durham Art Gallery exhibitions - Tony: http://bit.ly/2xRPS5J; Elia: http://bit.ly/2hghAlO
Link to “Mamma: In The Meantime” - http://bit.ly/2xSjZKB
Website for Tony’s paintings: http://www.tonyluciani.ca
Tony’s Facebook page: http://bit.ly/2xoF7GO
Listen to Tony’s 2016 interview, “The Person I Am In My Head” - http://bit.ly/2aknLwG
Music: “Wandering Path” by Dlay | CC NY NC ND | Free Music Archive
“Last Things: A Graphic Memoir About ALS” is a radical departure from the previous work of award-winning author and illustrator Marissa Moss, who is best known for her popular “Amelia’s Notebooks” series. In today’s show Marissa talks about the process of writing “Last Things,” a deeply personal story of how she coped with the devastating effects of her husband Harvey’s illness. A renowned art historian and UC Berkeley professor, Harvey died less than seven months after being diagnosed with Bulbar ALS. From being stared at in public because of how Harvey looked and why swimming kept Marissa sane to the reaction of her sons (14, 10 and 6 when Harvey died) to their father’s decline and how Jewish grieving rituals helped her, Marissa lays it all on the table and shares her hopes for the book. She also reads a passage from “Last Things,” and she explains how magic paperclip bracelets helped her youngest son, Asa, get rid of his nightmares.
Marissa’s website: http://marissamoss.com/
“Last Things” page: http://marissamoss.com/last-thing.php
Music: “Growing Silence” by Ketsa | CC BY NC ND | Free Music Archive
The Agewyz Podcast is on a summer break and will be back with all new episodes starting September 14th. Meanwhile, we hope you enjoy this popular rebroadcast: We often think of caregiving as something only adults do, but in the US there are at least 1.3 million youth caregivers (ages 8 to 18), many of them forced to drop out of school to provide care to a family member. That’s what happened when a surgical error left Feylyn Lewis’ mother in need of 24/7 care. Feylyn was just eleven years old at the time and her parents were divorced, so her 18-year old brother left college to care for their mother and even took a job to pay the mortgage. In today’s show, Feylyn talks about her brother’s sacrifice on behalf of their family and what it was like to grow up with a mom who needed constant care. Currently in England completing a PhD focused on identity development in young adult caregivers between the ages of 18 and 25, Feylyn also shares some of her research results and tells us how support for youth caregivers in the UK differs from support in the US. Tune in for a spirited conversation with a researcher on a mission.
Follow Feylyn on Twitter: https://www.twitter.com/FeylynLewis
Learn about the American Association of Caregiving Youth: https://www.aacy.org
Music: “Secrets” (Instrumental) by Yeyey | CC BY NC | Free Music Archive
Billie Jordan survived a major earthquake in New Zealand, but she was so traumatized after seeing people die in front of her she fled to tiny Waiheke island, where she bonded instantly with the senior citizens: death was on their minds, just as it was on hers. She figured if everyone was going to die, why not go out dancing? In today’s episode Billie talks about forming the Hip Op-eration Dance Academy—tailored for people ages 72-96—defying ageist stereotypes, the response to her project and how she and her troupe have been reborn through dance. She also shares her grueling yet at times hilarious experience of caring for, training and managing her senior dancers on the road to performing at the World Hip Hop Championship in Las Vegas—a journey captured in the documentary film, “Hip Hop-eration.” Tune in for this extraordinary tale of going from darkness into light and living life to the fullest.
Hip Op-eration Dance Academy: http://bit.ly/2ctVZRE
Facebook page: http://bit.ly/2ccNs7t
Watch the Hip Op-eration dancers at TEDxAuckland 2015: http://bit.ly/2cpWlXb
“Hip Hop-eration” documentary film: http://bit.ly/2d0Qclt
Sounds: Kapa O Pango Haka, New Zealand v. Australia Rugby World Cup 2011; Hip Hop Reggae New Music by Soldier Boy (Opotiki, NZ)
Help Our Wounded (HOW) Founder and President Rosalinda Babin is one of a growing number of parents caring for their veteran sons and daughters. The Iraq war was less than a month old when Rosie’s son, Alan “Doc” Babin, sustained a near-fatal gunshot wound serving on the front lines as a paratrooper medic in the Army’s elite 82nd Airborne Division. In today’s show, Rosie shares the powerful story of how Doc clawed his way back to life after his catastrophic injury, how her family’s life changed and how advocating for Doc affected her own health. She also tells us about her non-profit HOW, which helps military families with emergency financial assistance. The organization grew out of Rosie’s experience with Doc during his seven-month stay at Walter Reed Army Medical Center, where she saw firsthand the many roadblocks military members faced in trying to get veterans benefits. Rosie also tells us how, fourteen years after his injury, her son Doc has defied medical expectations.
Music: “Burning Light” by Ketsa | CC BY NC ND | Free Music Archive
Self-care gets a lot of play in the media, but the truth is we’re all connected and the practice of care involves many people, especially in times of crisis. In today’s show media scholar and veteran journalist Dr. Sherri Williams brings to life her recent piece for ELLE.com, “It Takes A Squad to Care For An Elder,” which captures her family’s response to the news that her grandmother had pancreatic cancer. Sherri tells us why—in the midst of earning her PhD—she dropped everything and traveled to Michigan to be with her grandmother, a news junkie and fan of Jay-Z, how the experience of her grandmother’s final days changed her and what she learned that others may find helpful. We also dip into some of Sherri’s other work, hearing her views on immigration and the care workforce. Dr. Sherri Williams is an assistant professor in race, media and communication at American University.
“It Takes A Squad to Care For An Elder” by Sherri Williams: http://bit.ly/2unf3vM
Sherri’s website: http://bit.ly/2vSpyYi
Music: "Save One Another" by Dlay | CC BY NC ND | Free Music Archive
Autism Village founder Topher Wurts says that with a special needs diagnosis, a parent’s “imaginary future child” dies all at once instead of by a thousand cuts over twenty years. In today’s show, Topher shares his family’s caregiving journey with son Kirby, who was diagnosed with autism at eighteen months old. From altered careers and tricky social situations, to the all-autistic Boy Scout troop Kirby thrives in and balancing time with neurotypical son, Zandy, celebrating each day is what this family is all about. Topher also tells us how he used his background in tech media to develop Autism Village, a free, Yelp-like mobile app for autism families, and how his non-profit Autism Friendly is training businesses to better serve clients on the autism spectrum.
To purchase a transcript of this episode please visit this page: Transcripts
Autism Village (free app)
Training for businesses:
Additional Resources: “Born on a Blue Day” by Daniel Tammet
“Ten Things Every Child With Autism Wishes You Knew” by Ellen Notbohm
Books by Temple Grandin
Learn about jazz pianist Matt Savage
This week as Senators wade through healthcare bills known and unknown, everyday citizens and grassroots campaigns like Caring Across Generations (CAG) continue to push for health policies that reflect the realities of 21st century life. In today’s show we catch up with CAG’s Political Director, Kevin Simowitz, who tells us what the campaign is planning in response to attacks on the Affordable Care Act and on Medicaid, how the 2018 elections will be shaped by care and tactics that will be used to hold the candidates accountable. Kevin also talks about progress in some of the states, including Maine’s Universal Family Care bill, designed to cover child and senior care, Hawai’i’s recently passed Kupuna Caregiver Act and the Michigan study bill he’s excited about. He tells us how he stays motivated in the ongoing effort to transform the way America cares, and we get an update on the health of Kevin’s 90-year-old grandmother (aka “Gammy”).
Find out more about Caring Across Generations: https://caringacross.org
Learn more about the disability rights group ADAPT: http://adapt.org
Music: “Arashi” by Kakurenbo | CC BY NC | Free Music Archive
55-year-old Maggie McClane is one of millions of working women who often feel like they have to choose between being a good employee and a good daughter. In Maggie’s case the choice was clear: when her father died, she quit her job to become a 24/7 caregiver for her beloved mother, who has Alzheimer’s disease, severe macular degeneration and permanent vertigo from a stroke. In today’s show Maggie talks about leaving the paid workforce, what she misses, and her concerns about her financial future but why she knows she made the right choice. She talks strategy: how she fights isolation, relies on Home Instead Senior Care, manages sibling challenges and plans to re-enter the workforce. Maggie also tells us what she’s learned from caring for her mom, how she’s changed and why she will never go without peach pants (think “D” word).
2017 Daughters In The Workplace Report: http://bit.ly/2uBobwe
Additional Resources: http://bit.ly/2uDzrYK
Music: “Even When We Fall” by Philipp Weigl | CC BY | Free Music Archive
Lindsay Jurist-Rosner was just nine years old when her mother was diagnosed with Multiple Sclerosis (MS). Over twenty-five years of caregiving later, she co-founded Wellthy with software developer Kevin Roche to help families with the seemingly endless number of healthcare-related tasks. In today’s show Lindsay talks about the stages of her mom’s MS and how caring for her in a more hands-on way after college affected her personally and professionally. She also explains how Wellthy care coordinators work directly with families, what the service costs and how the company is courting employers to offer the concierge service as part of its benefits package. Lindsay recently used her own company to find a home health aide for her mother, allowing them to enjoy mother-daughter time in a whole new way.
Wellthy website: https://wellthy.com
Lindsay’s story in her own words: http://bit.ly/2umP1IM
Also mentioned in the show: Après https://apresgroup.com
Music: “These Times” by Blue Dot Sessions | CC BY NC | Free Music Archive
78-year-old Rosemary Otto is a self-taught, outsider artist whose work is both a form of creative expression and has helped in her recovery from mental illness. Born in Germany to an American mother and German father, Rosemary now lives in the house where she was raised: her great-grandmother’s house in Lake Worth, Florida, where she paints in between visits to the nearby senior center and her doctor appointments. In today’s show, Rosemary talks about the box of crayons that sparked her interest in art as a child, her mother’s influence, how she manages from day to day and why living in a nursing home is worse than being in a mental hospital. She also tells us about her new series of paintings, “The Invisible Women,” which challenges us to think differently about the older adults around us.
Rosemary’s work on The Box Gallery Facebook Page: http://bit.ly/2tQ8OPG
Palm Tran link (for residents of Palm Beach County): http://bit.ly/2tMAfdH
Music: “Empty Trees” (remix) by Ketsa | CC BY NC ND | Free Music Archive
MK Czerwiec was not the kid in school who could draw. But in 1994, during her first nursing job on AIDS Unit 371 in Chicago’s Illinois Masonic Medical Center, she began writing and creating comics as a way of coping with what she witnessed daily: the terrible toll of AIDS. In today’s show, MK talks about Taking Turns: Stories From HIV/AIDS Care Unit 371, her graphic novel, which combines her memories of working in Unit 371 with the oral histories of its patients, family members and staff. MK tells us how the book came about, how creating comics has helped her in caring for her own family members, why graphic narratives are useful in high-stress situations and how comics are now being used as a vital tool in healthcare.
Link to MK’s website: https://www.comicnurse.com
Link to Graphic Medicine website: http://www.graphicmedicine.org
Graphic Medicine Manifesto: http://bit.ly/2t4JnYk
Graphic novels/memoir that feature caregiving & living with long-term illness:
Elderly family members: "Can’t We Talk about Something More Pleasant" by Roz Chast (excerpt: http://bit.ly/1FHmNTD); and "Special Exits" by Joyce Farmer (http://bit.ly/2tt2aiR)
Alzheimer's Disease: "Tangles" by Sarah Leavitt (http://bit.ly/2s5QDlm); and "Aliceheimer’s" by Dana Walrath (http://bit.ly/2sqwPID)
COPD/Hospice: "Things To Do In A Retirement Home Trailer Park When You’re 29 And Unemployed" by Nye Wright (http://bit.ly/1PD7Q9B)
Parkinson's Disease: "My Degeneration" by Peter Dunlop-Shohl (http://bit.ly/2ttpi0E)
Music: “Wounds” (remix) by Ketsa | CC BY NC ND | Free Music Archive
Growing up in Albuquerque, New Mexico writer Tanya Ward Goodman was joined at the hip with her father Ross Ward, a nationally known carnival artist and creator of the whimsical Tinkertown Museum. Years later, when Ross was diagnosed with early onset Alzheimer’s disease and told he had five years or less to live, Tanya gave up her apartment in LA and moved back home—living in the center of the museum—to help care for father. In today’s show, she talks about the experience, captured in her memoir “Leaving Tinkertown,” and how it reinforced her sense of identity and put Hollywood in perspective. From painting wagons with her father as a child on the carnival circuit to traveling to and from LA with him as he slid deeper into Alzheimer’s, Tanya describes the events—both frightening and funny— that marked her father’s decline, and how her family managed the downward spiral of this free-thinking, creative genius who lives on for her kids in Tinkertown.
Link to Tanya’s book: https://tanyawardgoodman.com
More about the Tinkertown Museum: http://tinkertown.com
Jay Nelson believes that regardless of background everyone has a story worth sharing, and that the stories of our elders are especially worth sharing and preserving. In today’s show Jay talks about The Legacies Project, an oral history project designed by his company Nice Work Public Media which is bringing together two groups that don’t often interact: teenagers and senior citizens. He tells us how the project came about, how it works and how it’s changing the dynamic on ageism by building relationships that benefit young and old. Jay also explains how The Legacies Project can be used in a variety of settings, what it costs and how the project exceeded his expectations.
Legacies website: http://www.legaciesproject.org
YouTube Page: https://www.youtube.com/user/legaciesproject
Football legend Bob Chappuis’ obituary referred to in the show: http://nyti.ms/2svySQ9
Music: “All Is Said” by Ketsa | CC BY NC ND | Free Music Archive
Director Deirdre Fishel walked around in a state of rage during the making of her documentary film, “Care,” which delves into the world of paid care from the perspective of both workers and care recipient. In today’s show, Deirdre talks about the making of her film and how her vibrant but frail mother influenced her decision to make it. From why people are afraid to talk about care to the frustration of paid workers—who pride themselves on their work despite their paltry wages—and how families are going bankrupt paying for these services, Deirdre tells us how her initial idea for a film just about care workers became something much bigger.
To purchase a transcript of this episode please visit this page: Transcripts
Film’s website: http://caredocumentary.com
Domestic Workers United: http://bit.ly/2r30kPT
Music: “Alya” by Dlay | CC BY NC ND | Free Music Archive
Peter Fox has a natural connection with older adults. An only child whose parents had him later in life and who were his best friends growing up, he also cared for an elderly neighbor in New York and now looks after a 92-year-old in his Palm Beach condominium. But it’s his partner Gary who he anticipates caring for in a big way in the near future. Although he’s fit and not on any medication, Gary is 73 years old. Peter is 38. In today’s show the couple talks about their age difference, how they support each other and their end-of-life wishes. Peter also talks about his own health complications, his fears about the rise of hate crimes, healthcare from the LGBT perspective and why his new specialty is dry parties. Tune in for a moving story of two men from different generations aging together with grace.
Music: “Barbara” by US Army Blues, Live at Blues Alley | Public Domain
US Marine Corps veteran Sherman Gillums, Jr., Executive Director of Paralyzed Veterans of America (PVA) at the time of this recording, discusses how to get beyond the phrase “thank you for your service” and really treat veterans well. Gillums was about to deploy to Afghanistan when he sustained a cervical spine injury that left him paralyzed. After going through two years of successful rehabilitation, he pursued a career advocating for veterans with disabilities. In today’s show he tells us why he joined the military and he discusses the work of PVA. He also talks about his own caregiver—his wife, an Afghanistan war veteran—how the Veterans Administration’s caregiver support program works and why it needs an overhaul, and the many ways we can show veterans we truly appreciate their service.
Paralyzed Veterans of America website: http://www.pva.org
Articles mentioned in the show: “It’s Time to Expand VA Support To All Military Caregivers” (5/16/17), Sherman Gillums, Jr.: http://bit.ly/2rcZHrd
“Why Veteran Treatment Matters” (5/12/17), Sherman Gillums, Jr.: http://bit.ly/2rDvBNG
Music: “Raindrops In My Mind” by Letmeknowyouanatole | CC BY SA | Free Music Archive
Loretta Veney’s greatest fear is that her mother will outlive her money. Her great grandmother lived to age 107 and her grandmother to age 98. Neither had dementia. But Loretta’s mother was diagnosed with Alzheimer’s disease at age 77. In today’s show, Loretta talks about journeying with her mother through Alzheimer’s and her book “Being My Mom’s Mom.” She describes the hilarious, poignant tale of her mother’s escape from her group home and the “earthly angels” who helped return her to safety, how she adapted to her mother’s reading aloud phase and the grocery store drama that led to a customer pleading with Loretta for help managing her anger issues with her mother. Loretta also talks about her husband’s death, coping with loss and why Lego bricks play a key role in her caregiver training. Tune in for an inspiring conversation with this fifth generation Washingtonian. Loretta’s website and book: http://bit.ly/2qtgp4E Washington Post article about Loretta and her mom: http://wapo.st/2rsvnWh RoadID Medical Bracelet: http://bit.ly/2qT02zQ Music: “Even When We Fall” by Philipp Weigl | CC BY | Free Music Archive
Writer/Director Liz Levine talks about a new web series she co-created with Jessie Award winning actress France Perras, who plays a caregiver (Madeleine) with a talking goldfish (Myrtle) who helps her cope with the strain of caring for twins and her aging parent, who has Alzheimer’s disease. We hear how Liz got involved with the web series after years of producing for film and television, what considerations went into the making of the pilot episode and why Liz and her team believe caregiver projects like this are essential. Pilot episode (voting ends May 19): http://bit.ly/2q1rt99 Facebook: http://bit.ly/2qZoc8z Twitter: http://bit.ly/2qp1N7t Follow Myrtle on Instagram: http://bit.ly/2qPqTvU Liz’s other projects mentioned in the podcast: “Across My Land” (2017 Cannes Film Festival) and “Story of a Girl” (Directed by Kyra Sedgwick): http://bit.ly/2ptqH0J Music: “Tomoshibi” by Kakurenbo | CC BY NC | Free Music Archive
Canadian author Rick Lauber is among a growing number of male caregivers who provide support alone or with the help of siblings. In today’s show, Rick talks about moving his parents from Vancouver Island closer to his home in Edmonton, co-caregiving with his two sisters and how writing helped him cope with his mum’s Parkinson’s and Leukemia, and the Alzheimer’s that took his father’s life. He shares what he learned from his caregiving journey, from finding joy amid the misery and the benefits of self-evaluation to how his last visit with his father sparked a desire to learn more about his parents’ past. His latest book: “The Successful Caregiver’s Guide” includes a downloadable toolkit. Rick’s website: http://bit.ly/2pCEIN5
When her mother was diagnosed with Huntington’s Disease, 29-year-old writer Melissa Bilchik had to decide whether she too should be tested; there was a 50/50 chance she was carrying the fatal gene. In today’s show, Melissa talks about the events leading up to her mother’s diagnosis of HD—which she says is like having Alzheimer’s and Parkinson’s simultaneously—caring for her mom, her views on getting tested and approach to having kids. She also talks about how millennial caregivers differ from baby boomer carers, her experience of support groups and why she’s not a Pinterest mom. All this and more on today’s moving show. Melissa’s blog: https://grownuppains.com More about Huntington’s Disease: http://bit.ly/1GrrvED Google Hangout for young caregivers (mentioned in the show): http://bit.ly/2ppZVtU Music: “Arashi” by Kakurenbo | CC BY NC | Free Music Archive
Author and essayist Judy Mollen Walters has been battling Crohn’s disease for over 16 years with oral medications, injections, biologic therapies and a devoted caregiver husband. In today’s show: how she balances writing with managing her autoimmune disease, and the toll of it on her kids, her husband and the family wallet. Judy also shares what she learned during a role reversal—caring for her husband—and she talks about how her grandmother’s Multiple Sclerosis (MS) informs her new novel, “A Million Ordinary Days,” what she wants people to know about Crohn’s and the definition of a pantser. Link to Judy’s website: http://bit.ly/2oTVMw7 Facebook: www.facebook.com/JudyMollenWalters/ Recent essays: http://bit.ly/2pDBKbY | http://wapo.st/2o57NS9 More about Crohn’s disease: http://bit.ly/2jVfeFT Music: “Cycle” by Dlay | CC BY NC ND | Free Music Archive
Veteran documentary filmmaker Christine Herbes-Sommers talks about her new film for PBS, which explores how longer life expectancy is transforming small town Norcross, Georgia and the big city of Atlanta plus older populations in Europe, China and Japan. From institutions like Social Security — created when the average life span was 62 — to the American suburbs, where over half of the US’ older population is aging in isolation, greater longevity is putting pressure on policies and practices designed for a bygone era. In the show Christine also talks about how immigration is linked to care for older adults, concerns young people have about getting older and the concept known among urban planners as the toilet paper rule. “Coming of Age” marks the end of a 45-year run in Christine’s filmmaking career, and the next chapter of her life is no less ambitious.
90-second preview of “Coming of Age”: http://bit.ly/2o3LVTa
“Coming of Age” home page: http://bit.ly/2nBoSmu
Music: “Spins and Never Falls” by Blue Dot Sessions | CC BY NC | Free Music Archive
A year ago on the podcast Lisa Howland told of quitting her job to be a full-time caregiver for her father, who has Parkinson’s disease, and of hiding the knives in her house because of his increasingly aggressive behavior – associated with his later diagnosis of Lewy Body dementia. In today’s episode: the changes since then in Lisa and her father’s lives, from his move into and out of an assisted living facility to Lisa’s new knowledge of Florida’s “stand and pivot” law and why she stopped going to a support group, learned to embrace mindfulness and hold onto the good memories of her dad. Tune in to this follow-up story, filled with dark humor and hard-won tips from a caregiving survivor. Lisa’s 2016 Agewyz Podcast Interview: http://bit.ly/2p2UT32 Learn more about Lewy Body Dementia: http://bit.ly/2aGrqVD Coping and support for Parkinson’s Disease: http://mayocl.in/2nFCTdX Music: “The Summit” and “Hundred Mile” by Blue Dot Sessions | CC BY NC | Free Music Archive Lew
Howard Grossman is an internist at the Cleveland Clinic Florida and widely known as a specialist in HIV medicine and LGBT health. His residency at Kings County Hospital in Brooklyn during the early days of the AIDS epidemic—when the Hospital was treating 5% of all reported AIDS cases in the world—had a profound impact on the young physician. In today’s show, Howard talks about his appearance before the Supreme Court in the landmark Vacco v. Quill case involving terminally ill patients and end-of-life choice. He also talks about LGBT aging, healthcare in Florida versus New York, how he handles giving patients bad news and why it’s important for patients to play an active role in their own healthcare. Later in the show, Howard shares his experience of attending a fundraiser at Mar-a-Lago and he offers his perspective on what he calls “the gated-community” mindset of the Trump administration. More about Dr. Howard Grossman: http://cle.clinic/2oCRUOD Supreme Court case Howard took part in (Vacco v. Quill): http://bit.ly/1XNjnJf Current case seeking to establish aid in dying in NY (Myers v. Schneiderman) http://bit.ly/2od15IM Music: “In Passage” by Blue Dot Sessions | CC BY NC | Free Music Archive
Millions of Americans rely on the direct care workforce to care for family members and friends. But this workforce is among the lowest-paid in the nation, the hours are often inconsistent and training can be hard to come by. The nation’s leading advocate for this paid caregiving workforce is the Paraprofessional Healthcare Institute (PHI). In today’s show, PHI President Jodi M. Sturgeon talks about how the aging of America is putting pressure on the labor pool, her concerns over repeal of the Affordable Care Act and PHI’s just-released policy recommendations for the Trump administration. Jodi also talks about caregiving in her own family, the Institute’s “60caregiverissues” initiative and why it’s important to find solutions to America’s growing caregiver crisis. PHI website: https://phinational.org Find out what the direct care workforce looks like in your state: http://bit.ly/2o9bJN1 PHI 2017 recommendations: http://bit.ly/2o8uccG 60caregiverissues initiative: http://bit.ly/2kHpdiQ Referenced NextAvenue article by Jodi: http://bit.ly/2kNvRWZ Music: “Discovery” by Jon Luc Hefferman | CC BY NC | Free Music Archive
Life was humming along for artist Rolando Chang Barrero, until one day he went to sleep and didn’t wake up for three weeks. A middle-age, openly gay man, Rolando always thought he would die of AIDS. Instead he was diagnosed with brain cancer. That was fourteen years ago. In today’s show, Rolando shares the physical and emotional stages of his disease and he explains how his life has changed as a cancer survivor. He talks about the path his art has taken, how the roles in his Cuban family are shifting as his parents age and his advocacy work with transgendered youth and people battling addiction. Rolando also offers his perspective on the benefits of being single, and he tells us how he’s preparing for older age.
Learn more about Rolando’s work and gallery: http://bit.ly/2mws7WJ
Upcoming show in West Palm Beach: http://bit.ly/2mNsDSd; http://www.haroldscoffee.com
Music: “Coco” | Radio Jarocho and Zenen Zeferino Huervo | CC BY NC ND | Free Music Archive
Author Julie Saeger Nierenberg believes that although death is an inevitable part of life, how we choose to be with the dying and the bereaved is up to us. In today’s show we talk about her book, “Daddy, This Is It: Being-With My Dying Dad,” about how Julie chose to move through the end of life issues presented by her father’s metastatic cancer. Shuttling between her home in Toronto and her dad’s bedside in Oklahoma, Julie learned to think differently about hospice care, how to say goodbye in a healthy way and why the last chapter of life is as important as each chapter along the way. Why are conversations about death so hard, despite the popularity of movements like Death Cafe? All this and more in today’s episode. Julie’s book: http://amzn.to/2mpE9V1 Explore her website: www.createwriteenterprises.com What is metastatic cancer? http://bit.ly/2nasE2p Music: “Always Late” by Ketsa | CC BY NC ND | Free Music Archive
New Yorker Jennifer Levin talks about how becoming a caregiver for her father at age 32 changed her and why she wrote about her experience in Cosmopolitan digital. She reflects on why her social media posts remained cheery even as she struggled offline with caring for her father, who had the degenerative brain disease Progressive Supranuclear Palsy (PSP), and the stark difference between being a Millennial or Gen-X caregiver versus caregiving as a baby boomer. Jennifer also explains why she was reluctant to join a support group and why being a bossy New Yorker is helpful advocating on behalf of caregivers.
Jennifer’s article for Cosmopolitan digital: http://bit.ly/2kpgfoG
Her private Facebook page for Millennial caregivers: http://bit.ly/2mMf0Be
More about Progressive Supranuclear Palsy (PSP): http://mayocl.in/2mfLK9t
Music: “Wounds” (remix) by Ketsa | CC BY NC ND | Free Music Archive
The challenges of his political career were nothing compared to the steep learning curve faced by former Wisconsin Governor Martin J. Schreiber when his wife Elaine was diagnosed with Alzheimer’s disease and he plunged into the role of spousal caregiver. In today’s show, Schreiber opens up about his climb up the rocky Alzheimer’s mountain and he discusses his new book, “My Two Elaines: Learning, Coping, And Surviving As An Alzheimer’s Caregiver.” From what he learned in counseling to the value of therapeutic fibbing and why ignorance of Alzheimer’s is worse than the disease itself, Schreiber offers sage advice for his fellow caregivers and a rallying cry for policymakers to address the looming crisis of dementia care. “My Two Elaines” website: http://mytwoelaines.com “Living With Alzheimer’s” article by Martin Schreiber, Milwaukee-Wisconsin Journal Sentinel: http://bit.ly/2l1mFKI Alzheimer’s 24/7 Hotline – 800-272-3900 Music: “Roll On” by Ketsa | CC BY NC ND | Free Music Archive
As a little girl Peggy Grande was obsessed with presidents, but she never imagined she would end up working for one. In today’s show Peggy talks about her ten-year tenure in the Office of Ronald Reagan after he left the White House, when she was the president’s personal assistant, and about her new memoir, “The President Will See You Now: My Stories and Lessons From Ronald Reagan’s Final Years.” She tells us how working for an iconic senior citizen shaped her views about getting older, and she speaks candidly about juggling motherhood with staying three steps ahead of the president while also caring for her own father, who had colon cancer. Peggy also talks about Reagan’s Alzheimer’s disease: the early signs, how she and the staff reacted to his diagnosis, why the Reagans went public with it and how Mrs. Reagan adjusted to her role as the president’s caregiver in the pre-Internet era, when Alzheimer’s was barely discussed. Peggy’s book: http://amzn.to/2lWCFhX Music: “Fanfare for the Common Man” by Aaron Copeland | US Marine Band
For the past fifteen years Kim Schofield has been living with Lupus, a disease her employer didn’t accept because Lupus is an invisible disability. In today’s show, Kim talks about how her life changed after her diagnosis, from getting fired for having a chronic disease to meeting with her Senator and becoming a social justice activist with the organization 9to5: Winning Justice For Working Women. Kim also talks about the current status of Georgia’s Family Care Act, which she and 9to5 are working to get passed, the legacy she wants to leave for her daughter and why she’s mobilizing to be part of the solution not the problem. Blog post by Kim mentioned in the program: http://bit.ly/2kPdKzY About 9to5: http://9to5.org/home/ Georgia’s Family Care Act Fact Sheet: http://bit.ly/2jZjgLZ Wake Forest Study on Benefits of Workplace Flexibility: http://bit.ly/2kjncIu Federal Family and Medical Leave Act: http://bit.ly/2en7FnI More about Lupus: http://bit.ly/13NZ73q Music: “Halves and Quarters” by Dlay | CC BY NC ND | Free Music Archive
For nearly two decades, pediatrician Dr. Nicole Rochester has had an insider’s view of the way hospitals work. In today’s show she shares her knowledge, explaining how the doctor-patient relationship has changed over the years, how the fast-paced nature of hospitals affects care and what she’s learned from advocating on behalf of her own family members in hospital settings. Dr. Rochester also talks about the loss of her parents, her concerns over repeal of the ACA and why she started her website aimed at helping families navigate the healthcare system. Tune in for this lively chat with tips and tools from a caring physician. Connect with Dr. Rochester: www.yourgpsdoc.com www.facebook.com/yourgpsdoc www.twitter.com/yourgpsdoc Music: “Spins and Never Falls” | Blue Dot Sessions | CC BY NC | Free Music Archive
AARP local offices have their work cut out for them in the state of Florida, where the percentage of residents age 65 or older is higher than anywhere else in America. And as retiring baby boomers flock to the Sunshine State, that percentage is expected to grow and give rise to challenges facing all older adults in our rapidly aging nation. In today’s show Jeff Johnson, State Director of AARP Florida, talks about AARP policy priorities in the state and the fate of long-term care and Medicaid if Tom Price (R-GA) is confirmed as Secretary of Health and Human Services. Jeff also talks about aging in America vs. other cultures, what you don’t know about AARP and his side project: the Love Not Fear Movement.
AARP Florida
AARP FL on Facebook: FB
AARP Livability Index
Make your voice heard! Find your state Representative
More about the Love Not Fear Movement
Music: “Barbara” by U.S. Army Blues | Public Domain | Free Music Archive
As the daughter of career UN diplomats, journalist Jay Newton-Small grew up all over the world. But her world was upended when, on top of grieving her mother’s sudden death, she had to adjust to a new role as primary caregiver for her Alzheimer’s-stricken father. In today’s show, Jay talks about adjusting to that new role, the agony of moving her father into an assisted living facility and why she formed her startup, which is transforming care with the help of writers like her. Jay also shares why she chose to follow her bestselling book “Broad Influence” with a project that’s been percolating for years: a “joint memoir” about her father’s life in his prime and her experience of caring for him in the years before he died. On the eve of the Trump inauguration, we also discuss the cost of long-term care and what it will take for Congress to come up with a plan for addressing this crisis that is bankrupting families.
Link to Jay’s book, Broad Influence: http://amzn.to/2jBjVqu
Contact Jay: newtonsmall@newamerica.org
Music: “Storytime” by Dlay | CC BY NC ND | Free Music Archive
Pittsburgh native Carole Brecht comes from a talkative family, but when her mother was diagnosed with Alzheimer’s disease no one discussed her illness. In today’s show, Carole shares what she learned about the importance of having frank conversations about Alzheimer’s, and she talks about the silence and isolation that accompanied her own caregiving experience. She also talks about her father’s unwavering devotion to her mother and how, during her saddest and darkest days, Carole found her way back to her roots as an artist, creating a book that combines Zentangle-inspired artwork with supportive letters written to caregivers. Tune in for a spirited discussion with this award-winning author. Learn more about Carole’s work & her book: www.SanGenWoman.com Referenced work of Dr. John Stanko: http://www.purposequest.com Music: “Cosmic Kitten” by Letmeknowyouanatole | CC BY SA | Free Music Archive
While she was still in college Jasmine Pearlman became the sole caregiver for her mother, who developed non-Hodgkins lymphoma in 2004 and then faced multiple health complications after her cancer went into remission. In today’s show, Jasmine talks about juggling classes with teaching herself how to dress her mother’s wounds and injecting her with blood thinners, being the sole breadwinner in her family and why she doesn’t buy into the idea of what you lose because of caregiving. She also talks about her television show Caregiving & You and her media company designed to support caregivers. Tune in for a story of hope and tenacity out of the Bronx. Link to Jasmine’s company: http://www.caregivingandyou.com Link to ModernHealthcare article mentioned in the show: http://bit.ly/2hWI6fE Music: “Spins and Never Falls” | Blue Dot Sessions | CC BY NC | Free Music Archive
For twelve years, Priya Soni and her family “lived in the questions” about the undiagnosed neurological condition that ultimately took her father’s life. In today’s show, Priya talks about the creative strategies she employed caring for her father and how her journey through his “mystery illness” led her to create The Caregiving Effect, a project whose mission is to build a movement of mentors through the power of shared stories. Tune in for a thought-provoking conversation about family, culture and spirituality, and a dad from Punjab who lives on through his daughter’s work.
Learn more about Priya’s work
Facebook page
Music: Deep Singh and Ikhlaq Hussain Khan – Live on WFMU’s Transpacific Sound Paradise broadcast from Barbes, Sep. 13 2008 | CC BY NC SA | Free Music Archive
In the blink of an eye, author Liz O’Donnell went from speaking out on the challenges faced by working mothers to losing sleep as a working daughter caring for her terminally ill mother and father in the early stages of Alzheimer’s disease. In this re-broadcast, Liz shares what she learned juggling the competing demands of work and family life during her crash course in eldercare, and she talks about her Atlantic Magazine article, “The Crisis Facing America’s Working Daughters,” which focuses on the hidden, often ignored troubles of working moms with aging parents.
Liz’s article: http://theatln.tc/1nVcsAZ
Liz's website: http://www.workingdaughter.com
Music: “Pre-Vertex (Limited Functionality Is My New Jam)” by Lee Rosevere | CC BY NC SA.
Jaime Estremera-Fitzgerald is a CEO on a mission. As head of South Florida’s Area Agency on Aging, known locally as Your Aging and Disability Resource Center, he leads a team dedicated to serving seniors, adults with disabilities and the people who care for them. In today’s show, Jaime talks about caring for his own parents, who lived well into their nineties, the complex emotions he felt moving his father into an assisted living facility and why he chose a facility that reflects the Cuban/Puerto Rican culture his father grew up in. Jaime also explains how the Center connects people with a vast array of home and community-based services that allow them to continue to age in place, and he shares the story of a daughter’s panicked call over her mother and how his team jumped in to resolve the situation.
To purchase a transcript of this episode please visit this page: Transcripts
Learn more: www.youradrc.org
Call the Helpline: 866-684-5885
Music: “Tower of Mirrors” by Blue Dot Sessions | CC BY NC | Free Music Archive
75-year-old Dan Hall talks strategy: as an aging, single gay man and as Treasurer of the Palm Beach County Human Rights Council, which advocates locally on behalf of LGBT individuals of all ages. Formerly married to a woman, Dan also talks about his relationship with his adult children, staying active socially, the housing landscape for LBGT seniors and his own aging-in-place setup. Link to the Council: http://www.pbchrc.org Music: “Cycle” by Dlay | CC BY NC ND | Free Music Archives
On their fifth wedding anniversary Jeff Block’s wife Debbie was diagnosed with anaplastic astrocytoma, a stage 3 brain cancer which she continues to live with today—15 years after being diagnosed. In this episode, Jeff talks about managing his wife’s round-the-clock care, navigating the tangled web of insurance coverage and respite care and writing his book “Nine Years After.” He also talks about how caregiving has affected him emotionally, his approach to medical bills and the surprising impact of North Carolina’s infamous “bathroom bill” on his and Debbie’s outings. Tune in for a candid conversation out of the Blue Ridge Mountains. Jeff’s book: http://amzn.to/2gJPopt Learn more about Debbie’s form of cancer: http://bit.ly/2gJXqP2 About the foundation Jeff mentioned: http://bit.ly/2fL6G5K Music: “You Um, I'll Ah” by Doctor Turtle | CC BY | Free Music Archive
65-year-old George Brandetsas spent four years flying back and forth from his home in northern California to his parent's house in Florida, tag-teaming with a sister in Rochester who helped coordinate their parents' care. In today's episode, George talks about juggling time off from work with caring for his colorful Greek parents in the last years of their lives, from his father's passion for drawing cartoons to George's moving in with his mother at an independent living facility where they binge-watched TV shows as mom battled colon cancer. George also tells us why he moved in with his mother and what he learned from his caregiving experience, and he offers a message for non-caregivers. Music: “Even When We Fall” by Philipp Weigl | CC BY | Free Music Archive
New York native Andrea Goldstein was an active duty naval officer from 2009-2016, and she’s been a contributor to the military website “Task & Purpose” since 2014. In today’s episode, Andrea talks about why she joined the Navy, how the military often overlooks contributions of male caregivers like her partner—himself a veteran of the war in Afghanistan—and issues raised in her article “Veteran Caregivers Can Be Men, But No One Recognizes That.” What is women’s work? What is men’s work? Tune in and learn why how we define both matters for all of us, in and out of uniform. Andrea’s article in Task & Purpose: http://bit.ly/2fbk6Dm Rand Report on American Military Caregivers: http://bit.ly/1gKJxJN NY Times article Andrea mentioned: http://nyti.ms/2eckBRw Music: “Florentiner March” | United States Navy Band | Public Domain
When an aging parent falls or needs help of any kind, even the most competent son or daughter can suddenly feel powerless. Meet Candy Cohn, the owner of Yaffa Senior Services. Candy guides people through the maze of senior living and home health options and helps them make the best choices for care and living situations as they age. Her services are free to her clients. In today’s episode, Candy talks about caring for her own parents, financial challenges faced by older adults and her tailored, face-to-face approach to serving seniors and their families. She also shares stories of people who have reached out to her for help and tells us why she’s passionate about her work. Candy is based in South Florida, but she also helps people in other states. Learn more: www.yaffaseniorservices.com Call Candy: 772-486-4914 Music: “Cosmic Kitten” by Letmeknowyouanatole | CC BY SA | Free Music Archive
Victoria Negri is a member of the millennial generation, but her father was a veteran of World War II and he developed Parkinson’s disease before Vicki turned 20. In today’s episode, Vicki talks about her new film “Gold Star,” which was inspired by the last years of her father’s life, and which Vicki wrote, directed and stars in alongside the renowned actor Robert Vaughn, who plays her father in the film. Vicki also talks about what it was like growing up with a dad who people often mistook for her grandfather but who was so physically fit he ran a marathon at age 65, how she and her father communicated through a magnet board after he had a stroke and could no longer speak, her parents’ deep love for each other despite their 37-year age difference and the meaning behind the title of her film. Click below for the latest news on Vicki’s award-winning film: Gold Star Official Website: http://bit.ly/2fg1raG Facebook Page: http://bit.ly/2f4UGs2 Twitter: https://twitter.com/goldstarfilm Instagram: https://www.instagram.com/goldstarfilm/ Music: “Blizzard (PON I)” by Kai Engel | CC BY NC | Free Music Archive
Bree Beynon was under the spell of music from a young age. An only child raised by a single mom, she started singing at age five for the seniors at a nearby nursing home and anyone else who would listen. So it’s no surprise that she found her way to a career as a music therapist, initially working in a hospice setting and now with the Palm Beach Music Therapy Institute. In today’s episode, Bree explains how music helps people get their autonomy back, whether it’s someone living with dementia, an age-related illness or an individual with autism. She also explains how Congresswoman Gabrielle Giffords recovered from brain trauma through music therapy and she tells us why seeing someone come alive through music never gets old. Explore the Palm Beach Music Therapy Institute: http://pbmti.com Contact Bree: bree@pbmti.com PBMTI’s Facebook page: https://www.facebook.com/PBMTI/ Find Resources Near You: http://www.musictherapy.org Music: “Arashi” by Kakurenbo | CC BY NC | Free Music Archive
When Craig Glover added Organ Donor to his driver’s license, he had no idea he would still be alive when he gave up an organ and that his wife Bonnie—who began dialysis treatments at age 51—would be the beneficiary. But that’s what happened when the couple participated in Florida’s first ever four-way paired kidney exchange, which saved a total of four lives. In today’s episode, Craig and Bonnie talk about their dual transplants, caring for each other before and after the operations and connecting with the kidney transplant community in Florida. They also talk about how and why they started their company, A Better Way Home Care, which serves a diverse population and is the only home health care agency in Palm Beach County certified by a national organization (SAGE) to serve the LGBT elder population. Bonnie and Craig’s home care company: http://abetterwayhc.net Learn more about the four-way kidney transplant the Glovers took part in: http://bit.ly/2dR8Yv8 Also mentioned in the show: Services & Advocacy for GLBT Elders (SAGE): http://www.sageusa.org Feeding the Hungry (FL): http://bit.ly/2e4cQLj CareerSource (FL) for training: http://bit.ly/2ebhZ7P
Working in a hospital as a Certified Nursing Assistant, Karen White saw the best and worst of how patients were treated. The eye-opening experience inspired her to earn an MBA, finish nursing school and start her own quality care company: Home Health Services of the Palm Beaches, which provides in-home care for people living with Alzheimer’s and related dementia. In today’s episode, Karen talks about her journey from nursing assistant to company founder and how her aunt’s decline influenced her path. She also explains why patients don’t always get the care they need in hospitals, why it’s important to foster a culture of compassion in her company, what she looks for in hiring and how she supports staff members who encounter racism on the job. Learn more about Karen’s company: http://www.hhspb.org/about-us Music: “Quest to the Temple of the Sun” by Dlay | CC BY NC ND | Free Music Archive
Dr. Connie Siskowski founded the Florida-based American Association of Caregiving Youth to meet the needs of eight to eighteen-year-olds who sacrifice their health, education and childhoods to care for relatives or household members who are ill, disabled or elderly, or battling other conditions such as substance abuse. In this episode, Connie talks about how caring for her grandfather as a child affected her own adolescence, the history of the AACY and its programs and services aimed at students and their families. She also explains how the economy and changing structure of the family is affecting youth caregivers and why this demographic—estimated at 1.4 million in the US—is often overlooked in conversations about care. Learn more about the American Association of Caregiving Youth: www.aacy.org Call the AACY: 800-508-9618 Music: “There's a Special Place for Some People” by Chris Zabriskie | CC BY | Free Music Archive
Journalist and author Katherine Stewart left New York and moved into her childhood home in Boston to care for her cancer-stricken mother in the last years of her life. In today’s episode, she talks about the challenges of writing on a deadline while caring for her mother and two small kids and how her husband, also a writer, helped to make it all work. Katherine also reflects on problems that arise when family members and society don’t view caregiving as real labor, and she discusses her piece for The Nation, “Inequality Has Gotten So Bad That We’re Offshoring Our Grandparents” which examines the growing number of Americans choosing to retire overseas because they can’t afford to grow old in the US.
Katherine’s recent pieces on aging and elder care:
“Inequality Has Gotten So Bad...” “What Happens When LGBT People Are Priced Out..."
“At Catholic Hospitals, a ‘Right To Life’ but Not a Right To Death”
Follow Katherine on Twitter
Music: “Even When We Fall” by Philipp Weigl | CC BY | Free Music Archive
Huffington Post Senior Writer Ann Brenoff writes about caregiving from the perspective of her own hard-earned truths. In today’s episode she describes her harrowing experience of going from having a full, active life with her husband to seeing him leveled by acute kidney failure and becoming the equivalent of his nurse. Ann also talks about what she’s hearing from other caregivers as a result of her column, why it’s important for caregivers to speak out and how she’s attempting to maintain a sense of normalcy in her kids’ lives despite their father’s condition. Tune in for a moving conversation with a spouse, mother and truth teller adjusting to a life she never imagined. Articles mentioned in the program: “No, Caregiving Is Not Rewarding...” (6/23/16) http://huff.to/28PbYK7 “8 Things You Should Never Say To A Caregiver...” (6/30/16) http://huff.to/294BFCF “When Caregivers are Honest...” (8/4/16) http://huff.to/2aCu2UJ For a full list of Ann’s HuffPost articles click here: http://huff.to/2cZec7b Music: “Arashi” by Kakurenbo | CC BY NC | Free Music Archive
Billie Jordan survived a major earthquake in New Zealand but was so traumatized from seeing people die in front of her, she fled to tiny Waiheke Island where she bonded instantly with the senior citizens: death was on their minds, just as it was on hers. She figured if everyone was going to die, why not go out dancing? In today’s episode Billie talks about forming the Hip Op-eration Dance Academy—tailored for people ages 72-96—defying ageist stereotypes, the response to her project and how she and her troupe have been reborn through dance. She also shares her grueling yet at times hilarious experience of caring for, training and managing her senior dancers on the road to performing at the World Hip Hop Championship in Las Vegas—a journey captured in the documentary film, “Hip Hop-eration.” Tune in for this extraordinary tale of going from darkness into light and living life to the fullest.
Hip Op-eration Dance Academy
Facebook page
Watch the Hip Op-eration dancers at TEDxAuckland 2015
“Hip Hop-eration” documentary film
Sounds: Kapa O Pango Haka, New Zealand v. Australia Rugby World Cup 2011; Hip Hop Reggae New Music by Soldier Boy (Opotiki, NZ)
Author and illustrator Kathryn Harrison created her picture book “Weeds in Nana’s Garden” to help children who have family members with dementia understand and be aware of the disease. Kathryn created the book after her mother was diagnosed with Frontotemporal Dementia (FTD) and her children began asking questions about their grandmother’s odd behavior. In this episode she talks about the healing properties of art, how her life changed as her mother declined and what her children learned from being involved in their grandmother’s care. Kathryn also shares how her daughter’s friends at school got involved in the process of creating “Weeds.”
Learn more about “Weeds In Anna’s Garden”: http://bit.ly/2cCSJlD
Explore Kathryn’s personal website: http://kathrynharrison.ca
For each book sold, one dollar goes here: http://www.alzheimer.ca/en
More about FTD: http://bit.ly/1Uj5T5R
Music: “Tomoshibi” by Kakurenbo | CC BY NC | Free Music Archive
Designer, researcher and professor Glen Hougan created a program at NSCAD University that puts an emphasis on designing products for seniors. In today’s show he talks about how he’s helping his students understand some of the physical limitations we all face as we age and how a project undertaken with the Alzheimer Society of Nova Scotia gave his students a chance to look at the actual brains of people with Alzheimer’s. He also talks about how medical products reinforce negative stereotypes about aging, how ageism affects the way those products are designed, how older adults are hacking everyday products to make their lives easier and how design thinking can improve health systems. Tune in for a fascinating conversation with an out-of-the-box thinker.
Glen’s “Product Hacks for Seniors” board on Pinterest: http://bit.ly/2bTn0hW
New York Times article referred to in the podcast: http://nyti.ms/2b9nK20
Music: “Discovery” by Jon Luc Hefferman | CC BY NC | Free Music Archive
What exactly is Alzheimer’s disease and how does it differ from other forms of dementia? Do medications used to treat Alzheimer’s really work? Dr. Constantine G. Lyketsos joins us from Johns Hopkins University to explain it all in terms everyone can understand. An internationally recognized leader in the field of dementia care and treatment, Lyketsos also reflects on the fear that often accompanies any mention of Alzheimer’s disease and how the onset of dementia presents an opportunity for new relationships to evolve with a loved one. His message is one of hope.
Dr. Lyketsos discusses off-label Alzheimer’s medications in this video: https://youtu.be/c6vyX6FgWXU
In a span of five years Nebraska native Valerie Bourdain lost her daughter to adrenal cancer, her mother to lung cancer and her father to leukemia. Her husband left the marriage midway through their daughter’s cancer journey. Valerie forged ahead as the sole caregiver for all three family members, but her weight and blood pressure soared to dangerously high levels. Motivated to get healthy so her grown son wouldn’t have to care for her, she slowly rebuilt her life—and her body, with the help of a fitness and nutrition coach. Today Valerie’s a fit 59 year-old training for her second rowing competition. Tune in for an incredible story of resilience and reinvention, and lessons learned along the way.
To purchase a transcript of this episode please visit this page: Transcripts
Explore Valerie’s website
Learn about adrenal cancer
Music: “Always Late” by Ketsa | CC BY NC ND | Free Music Archive
24-year-old Mickele Hogan’s first full-length play “Mourning the Living” explores the toll Alzheimer’s takes on a husband with the disease and on his anguished, caregiving wife. In today’s show Mickele talks about the wide range of emotions raised in the drama, what she hopes to achieve with it and how her caregiving family continues to influence her life and work. Debuting August 11 at the Thespis Theater Festival in New York City, Mickele’s play was inspired by her summers spent working at Home Instead Senior Care in Omaha, Nebraska. Get tickets to the play: http://www.brownpapertickets.com/event/2551912 Learn more: https://www.facebook.com/mourningtheliving/ About Mickele: http://www.mickelehogan.com Music: “Barbara” by US Army Blues | Public Domain | Free Music Archive
Pittsburgh native Sue Peschin spent a lot of time around older adults as a youngster, so it’s no surprise that she chose to advocate for older Americans in her career. Now President and CEO of the Alliance For Aging Research, Sue talks about the elders in her family who continue to inspire her and how the Alliance advocates on behalf of older Americans and their caregivers. From advancing scientific research to creating provider and consumer health programs, Sue and her team are working tirelessly to improve the human experience of aging. Tune in for a lively and informative conversation! Learn more about the Alliance For Aging Research: http://www.agingresearch.org Explore the Alliance’s Pocket Films: http://www.agingresearch.org/pocketfilms More about the Lifespan Respite Care Act: http://bit.ly/2aoh2Bv Music: “Upbeat” by Jon Luc Hefferman | CC BY NC | Free Music Archive
Fine artist Tony Luciani began taking photos of his 93-year-old mother Elia after she moved in with him in 2014. Primarily a painter, Tony initiated the photography project as a way to engage with his mother, who has dementia, and to create a keepsake for himself. To his surprise the “visual diary” drew widespread attention and a collection of photos his mother took with a small camera Tony gave her resulted in her own exhibition. In today’s show Tony talks about his evolution as an artist and a caregiver, his Italian heritage and what it’s like to live with Elia. He also shares the stories behind some of his photos, how his mother’s journey from one park bench to the next formed the basis of a new project and what he hopes to achieve with his work. And then there is the “hum.” Music: “Discovery” by Jon Luc Hefferman | CC BY NC | Free Music Archive Tony’s photography: www.YnotPhoto.com Tony’s paintings: www.tonyluciani.ca “Mamma” Facebook page: http://ow.ly/MP8Y302HmNl
When her father was diagnosed with B-cell lymphoma—a type of Non-Hodgkin’s lymphoma—Callie was thrust into long-distance caregiving complicated by her parents' old-world mentality. Born in Greece, her parents now live in California and Callie lives in Virginia. In today’s episode she talks about the challenges of hiring a male home health aide for her 88-year-old father, who is undergoing chemotherapy treatments, and coaching potential aides on how to avoid being fired by her stubborn 91-year-old mother. Callie also talks about the benefits of venting with friends, what not to say to adults caring for a loved one and why she plans to approach her own later years in a radically different way than her parents. Note: Callie is not her real name; we’ve changed it for the interview to protect her privacy. More on B-cell lymphoma: http://bit.ly/1HA31QR
22-year-old Atonya Jackson is one of over four million Americans employed as a direct care worker, a labor force that includes home health aides, nursing assistants and personal care workers. In today’s show Atonya talks about why she chose to become a paid caregiver, the importance of connecting with clients and her stressful experience of telling family members their grandmother has died. She also provides insight into how home care agencies operate, live-in versus hourly work, wages and how she approaches her work. Tune in for some frank talk from a dedicated millennial caregiver. Music: “Tropicks” by Broke For Free | CC BY NC ND | Free Music Archive Learn more: http://bit.ly/29B507C
Canadian Larry Singer is a glass-is-half-full kind of guy, but even he has his moments caring for his beloved wife, Sylvia, who has dementia. In today’s show he talks about the joys and frustrations of spousal caregiving, how he copes with stress and why he’s still in love with Sylvia despite how their lives have changed. Recorded on July 1, Canada Day, with hilarious closing thoughts for American listeners. Resources: Community Care Access Centres in Ontario: http://healthcareathome.ca Alzheimer Society Toronto: http://alz.to Music: “Flamenco Rhythm” by Sunsearcher | CC BY SA | Free Music Archive
Krysta Close and her siblings all live in different cities, but they banded together to figure out a new living situation for their mother when they realized her memory was declining and it wasn’t safe for her to continue living alone. Krysta’s mom, a retired psychiatrist, born in Poland, had taken it upon herself to get a neuropsychological exam because she too was worried about her forgetfulness. Her eventual diagnosis: early-stage Alzheimer’s disease. In today’s show Krysta talks about the process of moving her mother from Milwaukee to LA, how she went about choosing an assisted living facility for her mom, the chaos of her temporary stay with Krysta before moving into the ALF and the joy of watching her mother bond with Krysta’s young son. She also shares some of her caregiving stresses, what she learned navigating the healthcare system and how she’s preparing for her mom’s future. Email jana@agewyz.com if you’d like the contact information for the California-based health insurance broker Krysta mentioned in the show. The broker’s services are free and he specializes in the needs of older adults. Music: “Reflections Across the Sky” by Scott Holmes | CC BY NC | Free Music Archive
Just because you’ve been diagnosed with dementia, it doesn’t mean you can’t lead a meaningful life. So says writer Deborah Shouse, who explains in today’s episode how the film Alive Inside inspired her to write “Connecting in the Land of Dementia: Creative Activities to Explore Together,” her forthcoming book chalk-full of ideas for transforming the lives of people with dementia and their caregivers through artful engagement. Deborah tells us why creativity matters, why talent isn’t required to connect with a loved one and she offers tips for caregivers on how to get out of survival mode and initiate self-care. Part 1 of this inspiring interview can be found here: http://bit.ly/1ZU74f4 Music: “Discovery” by Jon Luc Hefferman | CC BY NC | Free Music Archive Pre-order “Connecting in the Land of Dementia”: http://amzn.to/28PKtAp Explore Deborah and Ron’s creativity workshops: http://bit.ly/28NXeIS Connect with Deborah’s blog: http://bit.ly/28Uq8qk Alive Inside is streaming on Netflix! Learn more about the film here: http://bit.ly/1mj65PA
Memphis-born writer Deborah Shouse believes engaging creatively with people who have dementia benefits both the caregiver and care recipient. In the first of this two-part conversation she describes the unsettling visit with her parents where she first saw signs of dementia in her mother, how her family learned to make decisions with the needs of everyone in mind and her father’s heartbreaking devotion to his wife’s care. Deborah also talks about her book “Love In Land of Dementia” and she shares her own creative approach to journeying through Alzheimer’s with her mother. Tune in for an inspiring conversation with this pioneering advocate and storyteller extraordinaire. Connect with Deborah here: https://dementiajourney.org Music: “Secrets” (Instrumental) by Yeyey | CC BY NC | Free Music Archive
An update on last summer’s interview with a New Yorker named Tim, whose dad is in the late stages of Parkinson’s disease and whose stoic mother refused outside help until recently. Tim talks about what’s changed with his parents since we last spoke with him, why his dad’s long-term care policy has helped despite its complications and how the family has benefitted from engaging an elder care expert. He also talks about how he deals with being “shaken to the core” after visits with his parents, and how personal growth and time spent in southeast Asia have influenced his approach to caring for them. See Episode 9 (Return of the Prodigal Son) for Part 1 of this lively and moving story. Music: “Triumph” by Jon Luc Hefferman | CC BY NC | Free Music Archive
CELEBRATING OUR 50th EPISODE! Laura Katz Olson is a professor of political science at Lehigh University who’s studied aging policies in the US for over three decades and published widely in the field of aging and health care. But not even her deep knowledge could prepare her for what she encountered trying to access health care services for her mother, a low-income senior who suffers from Parkinson’s disease and loss of vision. In today’s episode Laura talks about her new book, “Elder Care Journey: A View From the Front Lines,” an account of her eye-opening firsthand experience of the systemic flaws in US health policy and long-term care in particular. She explains why nursing homes and home care agencies often deliver poor quality of care, how taxpayer dollars support these institutions and why she believes caregiving should be a shared obligation. Academia meets the real-world in this compelling story of a daughter’s hair-raising health care journey with her 93-year-old mother. Laura’s book: http://lolson.cas2.lehigh.edu Resources to explore (cited in the piece): Nursing Home Compare: https://www.medicare.gov/nursinghomecompare/search.html Chen Neighborhood Medical Center (Florida) http://www.chenmedicalcenters.com Music: “A Tale of Two Cars” by Cory Gray | CC BY NC | Free Music Archive
88-year-old Mary Gallagher wound up in rehab for the same reason lots of older adults do: she injured herself during a fall. But this diehard fan of the Pirates, Penguins and Steelers is more than just a statistic. In today’s episode Mary talks about her rich past and present, why she has no desire to live with her kids and how her faith keeps her going. She also has a thing or two to say about the presidential candidates. Tune in for this lunchtime conversation with a sparky senior citizen. Music: “Banish” by Sláinte | CC BY SA | Free Music Archive CDC Important Facts About Falls: http://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html
Humor, optimism and resilience have helped writer and trained social worker Susan Margolis Stillman get through a host of family medical challenges. Susan is a breast cancer survivor, but two years ago her mother lost her battle with malignant melanoma and Susan’s son has a rare Jewish genetic disease called Familial Dysautonomia. In today’s episode Susan talks about how her son soldiers through life, how her early career as an oncology social worker unexpectedly prepared her as a caregiver for herself and her mother, and how she and her father cared for her mother during the late stages of her mom’s cancer. Susan also talks about her widowed father’s new life and why she supports his decision to remarry. Tune in for a compelling story of living life with grit and grace. Check out Susan’s blog: https://letmetellyousomethingblog.com More of her work: http://www.kveller.com/author/susan-margolis-stillman/ Music: “Deux Temps 5am Hommage” by Project 5am | CC BY NC ND | Free Music Archives
Feylyn Lewis is a millennial from Nashville, Tennessee who’s doing her PhD thesis on identity development in young adult caregivers in the US and UK. She has firsthand knowledge of the challenges faced by this often overlooked group: when she was eleven years old, complications from a surgery left her mother—a former nurse—with a physical disability and Feylyn’s brother left college to become mom’s full-time caregiver. In today’s episode Feylyn talks about what it was like growing up with a mother who needed 24/7 care, her brother’s incredible sacrifice on behalf of their family and how young adult caregivers can be supported through the transition into adulthood. Tune in for a spirited conversation with a researcher on a mission. Follow Feylyn Lewis on Twitter: www.twitter.com/FeylynLewis Learn about the American Association of Caregiving Youth: http://www.aacy.org Music: “Secrets” (Instrumental) by Yeyey | CC BY NC | Free Music Archive
Jamaica-born attorney Andrea McMillan began her caregiving journey on the morning of her brother’s birthday, when the actions of a distracted driver upended her family’s life. In today’s episode Andrea tells us what happened on that fateful morning, and she shares what she learned going to bat for three different family members, from coordinating her injured brother’s care to coming to grips with dementia in both parents. She also talks about how her parents benefitted from the network of Jamaican caregivers Andrea tapped into, her brother’s experiment with living in a nursing home in his early forties, the bizarre friendship she formed with the owner of a funeral home and how humor and faith helped her avoid “the Thorazine shuffle.” Music: “Sabre” by Ketsa | | CC BY NC ND | Free Music Archive
In her early twenties Jenn Chan left a well-paying job in San Francisco to care for the “sassy” grandmother who raised her. Ten years of caregiving later she created the Senior Shower Project, a start-up that celebrates new caregivers with a party. In today’s episode Jenn talks about why she created her start-up, how her Asian background influenced her caregiving journey and what she learned along the way, and the Mahjong gambling parties her grandma coordinated, which Jenn believes helped grandma to live well into her nineties. Tune in for a funny and moving tale that celebrates the circle of life. Learn more about Jenn’s start-up: http://www.seniorshowerproject.com Music: “Dawn’s Dew” by Ketsa | CC BY NC ND | Free Music Archive
What happens when two sisters with polar opposite views of their parents are called upon to provide care for them? In today’s episode: the sister who felt duty-bound to help out, stepped up and paid a price but views her caregiving journey as the most profoundly rewarding experience of her life. Our guest talks about her mother’s life-threatening spinal stenosis—later diagnosed as cauda equina syndrome—how her family went from paying $20,000/month for caregivers to becoming eligible for Medicaid, how the Manhattan co-op meant for her niece and nephew became hers out of necessity and why it’s essential to increase wages for America’s domestic workers. Tune in for a frank conversation with a creative caregiver who has chosen to remain anonymous. Music: “Reflections Across the Sky” by Scott Holmes | CC BY | Free Music Archive Learn more about cauda equina syndrome: http://bit.ly/1SxWyuF Learn more about naturally occurring retirement communities (NORC): http://nyti.ms/1SvTFXY
Mary Aguiar slept about twenty hours in the first three months after her mother moved in with her. Mary’s mother has Parkinson’s disease, and the medication she was on helped with her motor skills, but it also produced hallucinations and made her mother angry. In today’s episode Mary tells us what happened when she took her mother off all her medications, she talks about the challenges she’s faced with her siblings in the eleven years since mom moved in with her and the benefits of growing up among elders on the outskirts of Havana. Where Mary accessed programs for her mother: http://elderaffairs.state.fl.us/index.php Example of pedal exerciser mentioned: http://amzn.to/1V3XvuU
In the United States there are 1.5 million lesbian, gay, bisexual and transgender (LGBT) older adults — a number that’s expected to double by 2030. LGBT older adults came of age at a time in the US when discrimination was the norm for the LGBT population; as a result many LGBT seniors don’t trust the medical system, and the idea of moving into a long-term care facility means going right back into the closet. LGBT aging is compounded by a lack of resources, and laws and public policies that favor biological families. So how do LGBT seniors get the care they need? And where do LGBT caregivers find support? In today’s episode we break down the issues and learn about an innovative program that’s improving the lives of LGBT seniors and caregivers. Tune in for a candid and inspiring conversation with Bethany Henderson, program manager of the SAGECAP (Services and Advocacy for GLBT Elders – Caring and Preparing) program at Chase Brexton Health Care’s LGBT Health Resource Center. Learn more about the SAGECAP program: http://bit.ly/1q9ewqg Click here for additional resources: http://www.sageusa.org Music: “Somewhere New” by Lee Rosevere | CC BY NC SA | Free Music Archive
Todd Bonlarron has spent over a decade lobbying in Tallahassee and in Washington on behalf of the residents of Palm Beach County, Florida, where nearly 23 percent of the population is age 65 or older. In today’s episode he talks about priorities for the county and Florida’s latest budget package, how laws get made and the value of individuals participating in the policymaking process. Todd also talks about the major role his grandparents played in his life, and how growing up around lots of older adults shaped his views on aging and quality of life.
How older Floridians fared in the 2016 budget session: http://bit.ly/1M3huah
Learn more about Todd and Palm Beach County here: http://bit.ly/1Tl7Scn
Music: “Rythme Gitan” by Latché Swing | CC BY NC SA | Free Music Archive
Caring for a loved one can be so stressful that the positive gains are often overlooked. In today’s episode New Yorker Priya Soni talks about how caring for her late father transformed her life. Her father had a neurological condition that was never properly diagnosed, and grew worse over the course of twelve years. Priya’s journey with her father through his “mystery illness” led her to create The Caregiving Effect, a project whose mission is to build a movement of mentors through the power of shared stories. Tune in for a thought-provoking conversation about family, culture and spirituality, and a dad from Punjab who lives on through his daughter’s work. Learn more about Priya: http://www.priyasoni.net The Caregiving Effect Facebook page: https://www.facebook.com/thecaregivingeffect/?fref=ts Music: Deep Singh and Ikhlaq Hussain Khan – Live on WFMU's Transpacific Sound Paradise broadcast from Barbes, Sep. 13 2008 | CC BY NC SA | Free Music Archive
When her husband proposed that they spend the month of February in Mexico, Susan Reid was fearful of being away from her elderly parents for so long. Her mother is diabetic and her father has dementia. Neither parent drives, unless you count the golf cart that Susan calls “the clown car.” In today’s episode she tells us how that trip to Mexico played out, and how moving her parents to an elder-friendly community helped her survive a caregiver breaking point. Susan also talks about her mother’s near-fatal trip to the hospital on a Halloween night and the surreal experience of seeing orderlies in costume, aging in America and what it’s like to get the senior discount without even asking for it. And then there’s the free-spirited brother who raises goats in Nevada.
Music: “Kelli's Number” by U.S. Army Blues | Public Domain | Free Music Archive
Author Judith Henry was living in Los Angeles when she noticed a pattern emerging in her weekly phone calls with her parents, who lived in Florida: her mother’s voice was getting weaker while her father’s was getting louder. In today’s episode, Judith shares her story of returning to Florida for the last years of her parents’ lives and she tells us how her “caregiver-in-training” childhood prepared her for those years. She also talks about her moving and funny memoir, which mixes anecdotes from her childhood with practical caregiving advice. Tune in for a lively conversation that features an astrologer’s prediction, a time-out for dad during Chanukah dinner and the tale of a mother who planned her own funeral.
To purchase a transcript of this episode please visit this page: Transcripts
Check out Judith’s memoir and work: website
Music: “Barbara” by U.S. Army Blues (Public Domain); and “Swing 39” by Latché Swing | CC BY NC SA | Free Music Archive
Brooklyn-born attorney and empowerment guru Tamesha Keel was riding high in her career when her father died and she instinctively took on the role of her mother’s sole caregiver. Years earlier her mother had survived a massive brain hemorrhage, but she couldn’t live alone so she moved in with Tamesha. Then her mother was diagnosed with Alzheimer’s disease and terminal cancer. In today’s episode Tamesha talks about powering through work as she coordinated her mother’s multiple care needs, letting go of her “perfect daughter” mindset, tough-love fights with mom and their complicated but magical trip to New Orleans, sponsored by the Dream Foundation. Later in the show: the demographics of care. Learn more about Tamesha: http://www.lawportunities.com Music: “Harp Calling” by Ketsa | CC BY NC ND | Free Music Archive
In the blink of an eye, author Liz O’Donnell went from speaking out on the challenges faced by working mothers to losing sleep as a working daughter caring for her terminally ill mother and father in the early stages of Alzheimer’s disease. In today’s episode Liz shares what she learned juggling the competing demands of work and family life during her crash course in eldercare, and we follow up on her recent article in The Atlantic magazine: “The Crisis Facing America’s Working Daughters,” which examines the hidden, often ignored troubles of working mothers with aging parents. Tune in for a spirited conversation. For tons of tips and resources, check out Liz’s website: http://www.workingdaughter.com Music: “Pre-Vertex (Limited Functionality Is My New Jam)” by Lee Rosevere | CC BY NC SA
When her father crawled out of a window in the middle of the night, Lisa Howland had to make a thousand calculations at once to coax him back inside her house. What happened next was equally harrowing for this only child of divorced parents, whose father—a retired businessman—was incorrectly diagnosed many times before he was given a correct medical diagnosis. In today’s episode Lisa describes the progression of her father’s Lewy Body dementia and the extreme measures she took to keep him safe, she offers advice for stressed-out caregivers and her thoughts on long-term care in the US. Tune in for this vivid account of a fiercely devoted daughter, who learned to sleep with one eye open during her unpredictable ride. Learn more and get help here: https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction Music: “Ascent” and “Mangata” by Jon Luc Hefferman | CC BY NC | Free Music Archive
Pioneering gerontologist and Penn State University professor Steven Zarit has spent decades studying the effects of caregiving on families. In today’s episode he shares the dramatic results of a study that measured stress levels in people caring for a loved one with dementia on days when the care recipient was at home versus at adult day care. Zarit also provides stress-reducing tips for caregivers, including strategies that have emerged from support group sessions, he weighs in on long-term care in the US compared with other countries and he tells us what he’d say to the presidential candidates about support to family caregivers.
More about Steve: http://hhd.psu.edu/news/2013/Steve-Zarit.html
MUSIC: “Departures (Green Wall)” by Lee Rosevere | CC BY NC SA | Free Music Archive
Imagine your spouse waking up in the middle of the night desperate to know where he is and anxious to locate his family. That’s just the tip of the iceberg for Denise Sleeper, whose husband Scott was diagnosed with Early-Onset Alzheimer’s disease at age 48. In today’s episode Denise speaks candidly about this “tsunami” that hit their family, its emotional and financial toll, the changes she’s observed in her husband over time and how her sons, and extended family and friends have rallied around Scott. Tune in for a powerful story that focuses like a laser beam on what it means to live moment to moment with guts and grace. Scott’s Go Fund Me Page: https://www.gofundme.com/vaan4c Keep up with Denise’s work on her Facebook page: https://www.facebook.com/denise.sleeper.5?fref=ts Music: “Triumph” by Jon Luc Hefferman | CC BY NC | Free Music Archive
Filing a lawsuit can be an expensive and drawn out process—challenging factors for anyone, but especially older Americans, even if they’re healthy. In today’s episode California civil rights attorney Angela Oh talks about why mediation is a better strategy than litigation for resolving disputes and what she’s seeing in her work as a mediator in an aging and diverse America, and she offers tips on what to do if you have a dispute in housing or with a service provider. Angela also talks about how her family is preparing to meet the needs of her own aging parents, Korean immigrants whose cultural practices are outside the mainstream. California legislation Angela cited in this podcast: Fair Employment and Housing Act (FEHA) - http://www.dfeh.ca.gov/Publications_FEHADescr.htm Ralph Civil Rights Act - http://www.dfeh.ca.gov/Publications_RalphDescr.htm Unruh Civil Rights Act - http://www.dfeh.ca.gov/Publications_Unruh.htm Federal agencies cited: Equal Employment Opportunity Commission (EEOC) - http://www.eeoc.gov US Dept. of Housing and Urban Development (HUD) - http://portal.hud.gov/hudportal/HUD Music: “Hung Balance” by Ketsa | CC BY NC ND | Free Music Archive
52-year-old architect Scott Joyce felt unmoored after he lost both parents six months apart, all the more so because he didn’t have kids to keep him anchored to a traditional family unit. In today’s episode Scott talks about how he and his partner of 20 years plan to grow old without having the option of kids to care for them, how he and his siblings dealt with the decline of their parents’ health, and how being gay and coming of age at the start of the AIDS crisis affected the way Scott cares for himself and others.
Explore Scott's Architetural work: https://scottjoycedesign.com
Music: “Something for Nothing” by Ketsa | CC BY NC ND | Free Music Archive
It’s an election year in the United States, and with the number of Americans who need care of some kind skyrocketing there’s no better time to size up the political landscape around the issue of long-term care. In today’s episode we get the scoop from Kevin Simowitz, Political Director of Caring Across Generations, a national coalition of advocacy groups determined to transform the long-term care system in the US. Kevin tells us where the innovative legislation is brewing, he talks about why it’s important to move away from a top-down approach to crafting policy based on each state’s needs and he explains how Caring and its partners are working to change the narrative around care from one of crisis to one of opportunity. Check out Caring Across Generations here: www.caringacross.org Music: "Is That You Or Are You You?" by Chris Zabriskie | CC BY NC | Free Music Archive
Retired engineer Patricia Lodge was thrown for a loop when her late father remarried after her mother’s death, but she soon realized the gift he’d been given, finding love again in life. In this episode Patti talks about how she dealt with her father’s decline, how she came to appreciate her stepsister’s role as the primary caregiver for both her father and stepmother—who is now living with Alzheimer’s—and the drama that unfolded after her father’s death. Music: “Songe D'Automne” by Latché Swing | CC BY NC SA | Free Music Archive
MJ Campbell is the Director of Nursing for Michigan-based Rite Choice Home Health Care, which provides in-home care for seniors through a specialized staff that includes physical and occupational therapists, speech therapists, dieticians and more. In this episode MJ talks about the importance of allowing patients to recover in their homes after a hospital stay, and her own role as the primary caregiver for her parents. The daughter of a pastor, MJ hopes that people see the value in investing in America’s seniors—who she believes are just an important a resource as anyone else.
Ruthanne Zentner is a trained acupuncture physician who lived in Sante Fe, New Mexico for several years before returning to her roots in New York City, and then remaking her life in South Florida after marrying in her late-30s. In today’s episode she talks about being on standby for her larger-than-life aging parents, the role of Eastern Medicine in her life and raising an 8-year-old who loves Pad Thai. Tune in for a story of healthy aging that’s all about balance. Music: “Swing 39” by Latché Swing | CC BY NC | Free Music Archive
German-born Marion Brunken didn't know any English when she came to the US in the late 1990s after winning a green card lottery that gave her permanent residency status. Now fluent in the ways and language of America, Marion is the executive director of a nonprofit organization and she's lived in the Washington, DC area for more than 15 years. But on recent trips back to Germany she's noticed some troubling changes in her mother’s behavior. In today’s episode Marion talks about coming to grips with her mother’s cognitive decline, the growing significance of her trans-Atlantic journeys home, and how she and her sisters are redefining their roles during this challenging new phase of their mother’s life.
Writer, producer, publisher and social entrepreneur Deborah Goldblatt knows how to live life to the fullest. In today’s episode she talks about her passions and the people who have influenced her growth, how the loss of her mother at a young age shaped her views on death, long-distance caring for her dad, and her adventurous journey from New Zealand to Mexico and points in between. With kids and an in-demand cinematographer spouse in the mix, there’s never been a dull moment.
Tune in for an inspiring story of aging well and wisely. Music: “Karachal” by Alash | CC BY NC ND | Free Music Archive
What happens when your parent has a medical emergency and you’re the only family member willing to respond? In today’s episode, Pat Rullo shares her solo caregiving journey from Arizona to Ohio, where her mother’s worksite fall led to an eye-opening hospital experience and Pat’s career as an advocate for patient safety. Tune in for an inspiring conversation with radio producer and host, speaker and author Pat Rullo, whose book “Speak Up And Stay Alive” is a must read for caregivers. Learn more about Pat’s work here: http://www.speakupandstayalive.com Music: “Curious” by Jon Luc Hefferman | CC BY NC | Free Music Archive
30-year-old Natasha Rawding was an infant when her parents divorced and she and her mother moved in with Natasha’s grandparents. Her mother later moved out, but Natasha remained with her grandparents, who raised her. Her grandmother was a nurse, and her grandfather a Vietnam War veteran with a thriving career at the Pentagon. But at age fifty-six he was diagnosed with Alzheimer’s disease, and Natasha—still a teenager—and her grandmother became her grandfather’s sole caregivers. Tune in as Natasha shares the life lessons she gained along the way, and she relates her bizarre experience of attending a caregivers conference at age 15. Music: “Secrets” (Instrumental) by Yeyey | CC BY NC | Free Music Archive
Dr. Victoria Walker used to shy away from politics; as a healer she didn’t want to alienate people, and she didn’t think she could make much of a difference politically. But as her career evolved, the physician shifted her stance. In today’s episode she explains why, and how the project she’s helming—the Family Caregiver Platform Project—plans to get caregiving issues included in political party platforms in every state in America. Ahead of the 2016 presidential election, Vicki and her team are hitting the ground running, helping family caregivers connect with legislators across the country. Music: "Set the Dogs" (Instrumental) by Yeyey | CC BY NC | Free Music Archive
At age nineteen Evelyn Godwin was thrust into the role of caregiver for her mother and her younger brother, when her father—a captain in the New York City Fire Department—was killed in the line of duty. Years later, while she worked as both a nurse and a healthcare executive, Evelyn lost her mother to cancer and her husband to heart disease. In today’s episode: learning from loss, healthcare from an insider’s perspective, and the healing power of everyday exchanges. Music: “Upbeat” by Jon Luc Hefferman | CC BY NC | Free Music Archive
Attorney Maria Anastas is spending a lot of time lately flying back and forth between her home in Los Angeles and her parents’ house in Phoenix, Arizona. With her father’s health rapidly declining, she’s juggling the needs of her clients with taking action on her father’s behalf, as her mother and her brother—who lives with their parents—handle dad’s everyday needs. In this episode, Maria talks about coming to terms with her father’s imminent death and how the process has rekindled past losses, the gratitude she feels for her tight-knit family, and why focusing on her own health has become a top priority. Music: “Is That You or Are You You?” by Chris Zabriskie | Free Music Archive
Emptying out a family home is exhausting, especially after a parent dies: items in the house become much more than just objects, and letting go of them can be as hard as letting go of the person you lost. In today’s episode, professional organizer Lisa Woodruff talks about what it was like to empty out her dad’s house after he died, and how, in her line of work, she helps people decide what to keep and let go of during stressful times.
Film industry veteran Kassi Crews spent a year searching for a script to produce that spoke to her heart. She finally found it in "Broken Memories," a well-told, serious yet at times funny story about a son who returns home to the family farm to care for his Alzheimer's-stricken father. In today's episode Kassi gives listeners a behind-the-scenes look at the film and shares her emotional journey of taking the story from script to screen.
Author and innovator Kay Bransford left her corporate career because she couldn’t work full time, be a mom AND an effective medical advocate for her parents, who both had dementia and were in denial about their condition. In this episode, Kay shares her tough yet at times comical caregiving journey with mom and dad, and how it affected her relationship with her siblings and her kids. Caring for her parents not only changed Kay’s perspective on life, it led to a new career: the organizational book she created to manage her parents’ lives—and her own sanity—became the basis for MemoryBanc, an award-winning system Kay created to organize and protect documents, accounts, and assets.
To learn more about MemoryBanc, winner of the AARP Foundation’s “Older-Adult Focused Innovation” prize, click here: http://www.memorybanc.com
Growing up in Natchez, Mississippi, Courtney Timm spent a lot of time hanging out with the seniors in her neighborhood, mostly to escape the chaos of life with five-siblings. Now 26 years old, Courtney is a healthcare administrator at Lourdes Noreen McKeen, a retirement community in West Palm Beach, Florida. Tune in for an inside look at the competitive field of senior living, from the perspective of a millennial who is passionate about her career.
Journalist Desa Philadelphia grew up in Guyana, in a multigenerational household. The set-up was common in her country, but being a teenager wasn’t fun for her with a meddlesome grandmother in the mix. Now living in Los Angeles, married and mother to a 5-year old, Desa seeks out opportunities for her daughter to interact with older people. In this episode: life lessons from multiple generations, managing parental health problems from afar and the upside of living in nip-tuck LA. Check out Desa's book here: http://www.amazon.com/Shops-Angeles-That-Must-Miss/dp/3954516152/ref=sr_1_1?s=books&ie=UTF8&qid=1462475782&sr=1-1&keywords=desa+philadelphia
Diane Buhler’s parents were living in Florida when she moved there from New York. She saw the move as temporary—a chance to recover from a rough patch in her life and help her parents after her father’s stroke. A lifelong adventurer who was still single at age thirty-nine, Diane planned to eventually leave Florida for New Zealand. But then her life took some unexpected turns. A tale of marriage, motherhood, and keeping up with mom. To learn more about Diane’s non-profit click here: http://www.friendsofpalmbeach.com
Baby boomer Ralph Delia grew up in Lindenhurst, New York, surrounded by cousins in a tight-knit Italian family. His parents lived life to the fullest, and didn’t dwell on their mortality—rarely going to the doctor, stubbornly enduring ailments. So when his father received a life-shattering medical diagnosis at age ninety, Ralph scrambled to take charge of his dad’s healthcare in a way he hadn’t anticipated. In this episode we hear how his experience of caring for both parents affected the way Ralph handles his own healthcare needs, how he and his wife are changing their lives to feel more connected to people they love, and how living in Florida has given Ralph a unique perspective on aging.
Research has shown that positive emotions can help you bounce back from adversity, and that choosing positive emotions over negative ones profoundly affects resilience. In this episode host Jana Panarites updates listeners on her 86-year-old mother Helen’s recent move to Florida, and shares how her mother’s mostly positive outlook on life has kept her on an even keel in the face of all sorts of setbacks. A tale of resilience, long-distance caregiving and learning to let go.
Music: “Barbara” by the US Army Blues; “Swing Gitane” by The Underscore Orkestra
“Search and Fight” by Sergey Cheremisinov
“The Windover” by Project 5am
All music CC BY NC | Free Music Archive To see Prof.
Barbara Frederickson’s TED Talk “Positive Emotions Transform Us” click here: https://youtu.be/hKggZhYwoys
For strategies on how to reduce falls among older adults click here: http://tinyurl.com/o54e8xq
Lisa Binassarie emigrated to the US from Trinidad when she was just three years old and she was raised in New York City. About to turn fifty, she's shocked at the ways her body is betraying her even as her mind remains sharp as a tack. But Lisa is active and eats well, unlike her 69-year-old mother, whose quality of life she worries about despite that mom shares her life with a man who’s devoted to her well-being. Lisa also wonders about her own quality of life going forward. She and her partner don’t have kids, and like many childless people, she wonders who will help care for them in their later years. In this episode Lisa shares her views on how she wants to live those later years, she reflects on the importance of being with people she cares about and the need to promote a good quality of life for her aging gay community.
Brooklyn-born Mary Buhler says you can’t prepare for older age—you have to live it. Now 82-years old, she grew up in an era when kids played stickball in the street and families gathered around the radio for nightly entertainment. In today’s podcast Mary shares the pivotal moments of her life, taking listeners on a colorful journey marked by adventure and tragedy, and years of caring for her late husband who had Parkinson’s and Alzheimer’s. Fasten your seatbelt.
As a teenager Tim couldn’t wait to get away from his parents, but now, at age 50, he visits them regularly at their home in Connecticut. It feels far away from Manhattan, where for the past 25 years Tim has lived as an openly gay man. But the home front beckons: his father has advanced Parkinson’s disease, and his mother can barely keep up as Dad's sole caregiver. In this episode Tim tells us how his mother was finally persuaded to get outside help, he reflects on his changing views of his parents, and he tells us what it’s like to be doing chores around the house that he hasn’t done since he was a kid. Music: “History Explains Itself” by The Losers | CC BY NC | Free Music Archive
With Americans living longer than ever, there’s a good chance many of us will age in place well into our nineties. How will we gain access to health and social services? Will the most frail among us be neglected? The folks at Lifeforce In Later Years (LiLY) are determined to prevent this from happening. Their community living program, Morningside Village, serves “senior seniors” living in New York’s Morningside Heights neighborhood. In today’s episode, Director Paula Seefeldt tells us all about this innovative, holistic model of community living that can be replicated in other cities and towns. Find out more about the work of Morningside Village and Lifeforce in Later Years: http://lifeforce-in-later-years.org To read the “New York’s Oldest Old” newspaper article referred to in the podcast, go here: http://tinyurl.com/p9cu2mq
Middle school teacher Jean Boyer says that with the constant flow of medical professionals going in and out of her house it’s like living at a train station. But when it comes to caring for her daughter Jamie, a 30-year-old with multiple medical problems, Jean is in it for the long haul. A tale of extreme caregiving from Picayune, Mississippi. Music: “Mid Day Blues” by Tate Peterson | CC BY NC | Free Music Archive
By the year 2030, one in five Americans will be age 65 or older. Meeting their needs will be no easy feat, but one organization is making it easier for seniors to age in place: Arlington Neighborhood Village. ANV is a bottom-up model of community living with a dedicated staff and hands on board members. In this episode we go inside the organization with Program Manager Kim Sanz, who believes that community is all about connecting. Learn more about Arlington Neighborhood Village: http://arlnvil.org MUSIC: “Chill” by The Losers | CC BY NC | Free Music Archive
29-year-old Hilary Tone recently traveled to Oregon to celebrate her grandmother’s 98th birthday. In this episode she reflects on how Alzheimer’s has eroded her grandmother’s brain but not her spirit. Hilary also discusses her changing relationship with her own mother, and why it’s important for people in the millennial generation to talk about aging
Gina Latture Briscoe negotiates a range of family dynamics in her position as marketing sales director for an assisted living facility in Washington DC. In this episode she reflects on her “calling” as an elder care advocate and provides tips for family members thinking about placing a relative in an assisted living facility. Gina’s thoughtful approach is informed by her experience of living with multiple generations under the same roof. This episode is dedicated to the memory of Walter “Suge” Latture.
Lisa Saunders realized something wasn’t right with her parents when they got lost on a road trip near her hometown in Northern Virginia. She flew up from Florida to check in on them, and soon got a crash course in long-distance caregiving. In the intense months that followed Lisa juggled caring for her parents with holding down a full time job and managing her own hectic life. How did she do it? She tells us in this episode, and reflects on how her experience as a caregiver informs her job as an estate planner.
What exactly is Alzheimer’s disease? How does it differ from the sort of forgetfulness we often refer to as having “a senior moment”? Dr. Constantine G. Lyketsos explains it all in terms that everyone can understand. An internationally recognized leader in the care and treatment of patients with Alzheimer’s and related dementia, Lyketsos also reflects in this episode on the fear that often accompanies any mention of the disease, the latest treatments for Alzheimer’s patients, and how the onset of dementia presents an opportunity for new relationships to evolve with a loved one. His message is one of hope.
Dr. Constantine G. Lyketsos is the Elizabeth Plank Althouse Professor for Alzheimer's Research, and Chair of Psychiatry at the Johns Hopkins Bayview Medical Center.
Learn more about Dr. Lyketsos' work
Host Jana Panarites shares her story of becoming an accidental caregiver for her mother and why she started this podcast on aging.
“In Cold Blood” by The Losers
“Cocktail Hour” by Adam Selzer
“Planta Baja” by Tres Triste Tangos
“Greatness” by Adam Selzer
All music is from the Free Music Archive and CC BY NC