engAGINGconversations's podcast: Recent Episodes
Sheryl Smith RN
Honest discussion about end of life planning and choices to help start conversations and change the way society doesn't talk about death. Our goal is to improve quality of life.
Teacher, author, corporate trainer, psychotherapist, and author Yvonne Caputo, shares her family caregiver story with us today. Through experiences with her professional life, she was able to have difficult conversations with her father that changed their relationship, and ultimately honored his end of life wishes.
Listen to our talk today and learn more about:
- The MOST important thing we can do to improve communication with our parents
- The Five Wishes Document
- Quality of Life
- How to Pick your Health Care Agent/Proxy
And where to find out more about Yvonne Caputo and her books:
Flying with Dad
Dying with Dad
How does one manage when you have 4 girls between 10 and 15 years of age and your mom has a life changing medical issue? Why you become sandwiched, of course. Laurie James shares her experience with us today. And the struggles are real.
Listen to our talk today and find out why it’s so important to advocate for your loved ones, even if it means being the “squeaky wheel”. Other things you MUST know:
- Why you need to do your homework when your are bringing caregivers into your home
- The importance of having conversations about finances with your parents (AND YOUR KIDS)
- Why YOU must have Power of Attorney/Health Care Proxy documentation in place
- Ask for a palliative care consultation (even if you think it means Hospice–it doesn’t!)
- Life is short, and if you are not fulfilled, find someone who can help you get where you want to be!!
- What is the difference between having a coach and a therapist
Resources:
Sandwiched: A Memoir of Holding On And Letting Go
Laurie’s Coaching Services
Social Media links: FB InstaGram
Personal stories are so important. Sharing our agonies and defeats as well as our wins can help others when they find themselves in similar situations. Kelley Skoloda shares her story today. She was a busy, healthy, active businesswoman, wife and Mom when she was diagnosed with cancer. She wrote a book, A Way Back to Health: 12 Lessons From a Cancer Survivor which she talks about with me. Listen and find out:
- How important colon cancer screening is
- Why it’s so important to advocate for yourself, or have a family caregiver advocate for you
- That it’s ok to interview your potential physician
- How gratitude can help even on the worst of days
Find Kelly’s books here:
A Way Back to Health
Too Busy to Shop: Marketing to Multi-Minding Women
Christian Worstell is a licensed insurance agent, senior staff writer for MedicareAdvantage.com, and Medicare expert. I talk with him today about Medicare and all it’s moving parts, including the annual enrollment period which runs from October 15th-December 7th every year.
Listen to today’s episode and learn:
- The different types of Medicare coverage
- About the Annual Enrollment Period
- Things beneficiaries should be aware of during AEP that can be costly if you don’t pay attention
- Advice and tips on how seniors can choose the best plan for their needs
- Benefits covered by Medicare that beneficiaries may not be aware of
- Why you should care about this if you’re not on Medicare
Other resources to help you navigate Medicare:
Find a licensed insurance agent
State Health Insurance Assistance Program (SHIP)
Annual Notice of Change
People like to talk about finances about as much (or maybe less) than they like talking about death. But it is HUGELY important to know what your parents finances. And hopefully before you take on the role of family caregiver.
I’m talking with Ryan McEniff today and he’s talking to me about this topic. Ryan is the owner/CEO of Minute Women HomeCare in Lexington, MA and host of the podcast The Caregiver’s Toolbox. We are sharing our platforms to help get the word out about the need to have conversations with your parents early and often. We touch on many different issues related to finances and aging. Re-listening to this has given ME anxiety! But avoiding this topic doesn’t make the issues related to it go away. And putting these conversations off until your family is in crisis WILL NOT help you.
Listen and learn about:
- What home care can cost
- What nursing home care can cost
- Why you need to be proactive to help your parent. AND yourself
- Where you can find resources to help you navigate this time
Resources:
Five Wishes, The National Aging in Place Council, Act III, NAIPC
Did you know that dementia is not a diagnosis, but rather a list symptoms? And that 50% of those over 65 can have one of these symptoms? What is a dementia whisper and how does one become one? Laura Wayman has spent decades in the memory care space. Her book A Loving Approach to Dementia Care now in its 3rd edition, is a resource for us all. She talks with us today about her experiences and expertise.
Learn about:
- becoming dementia aware and why it is essential
- how to effectively communicate with a loved one with dementia
- caregiver burnout
- managing dementia symptoms
- dementia navigators
Check out Laura’s video here: Inside the mind of someone with dementia
Follow her on FaceBook, Instagram, Twitter, LinkedIn
Kathleen Vallée Stein is a baby boomer. And so are her siblings. If you were raised in the 50’s, 60’s, and even 70’s, your father often had the final say about everything. And many ruled with an iron hand. When her Dad was facing end of life, it was difficult to reverse rolls. And her Mom was not in a position to take the lead. So what do you do? Kathleen’s experiences led her to write a beautiful book, Loving Choices, Peaceful Passing: Why my Family Chose Hospice.
We talked about her experience as a family caregiver. Listen today as we discuss:
- How to start an end of life conversation with your parent when your parent “ruled the roost”
- Why you might need to start the conversation about hospice
- Divide and conquer (if you have siblings) is a great strategy
- Why it is so important to talk to your parents about finances
- Reasons to consider a hospice chaplain
- And why it is SO important to do these things before your parent is dying
Resources:
The Five Wishes, Palliative Care vs. Hospice Care, Comfort Care,
Find Kathleen here: YouTube, Facebook
Kami Schaal is a career RN. She spent over a decade working in an ICU, in a level 1 trauma center in Philadelphia. She’s seen it all. She transitioned to home care/hospice case management and says the transition wasn’t difficult. She came to the use of essential oils with her family. Her academic background helps her understand them and confidently share them with others.
Listen today to hear about:
- neuropathic pain
- How it is (and is not) treated
- Why you might want to learn more about the use of essential oils
- Who can benefit from their use
- and a bonus discussion about vaccines and things you may (or may not) know about them
Hear more from Kami on her new podcast:
The Imperfect Adventure
And find her here:
Her website: Family Wellness Warriors or on Facebook
Dr. Aaron Blight has had a lifetime of caregiving experience. Both personal and professional. He took what he learned as a family caregiver and started a career in professional caregiving. His latest endeavor has taken him from the owner of a homecare business, to being the founder of Caregiving Kinetics, and author of When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative.
Why should you listen? Because there are over 53 MILLION Americans providing unpaid care for a family member. And 83% of those caregivers are experience MORE stress with the onset of Covid-19. And chances are very good that if you are not already a family caregiver, you’re going to be.
We had a great conversation today about:
- Some of the struggles family caregivers face
- Unanticipated rewards of being a family caregiver
- Suggestions for managing guilt/resentment family caregivers can feel
- What dying teaches you about living
- Why you should read his book
Find Aaron on Facebook, YouTube, LinkedIn, Twitter
Home Instead Senior Care Services, Visiting Angels
Terry Lyn Fountain has a great outlook on life. As you listen to her speak you can tell she is an optimist. And she is also an realist. She is a 78 year old cancer survivor. She has a husband for whom she provides care. She is also an essential oil user and a new dōTERRA wellness advocate.
She shares her experiences today. On today’s episode, we talk about:
- Why it’s important to put yourself first
- Palliative care and/or integrative medicine
- How she developed a partnership with her medical doctors to incorporate the use of essential oils
- What health benefits she and her husband have experienced since starting to use dōTERRA essential oils
- How many prescription medications she has been taken off of since she began using essential oils
- One great piece of advice she has when it comes to visits with your doctors
Get in touch with Terry here: tlfnotary4@gmail.com
Links to Resources:
dōTERRA
MD Anderson Cancer Center
You never know when you might become a family caregiver. Annette Berkovits never thought she would be in that role. In fact, at this point in her life, as a woman in her 70’s, she thought someone might be needing to care for her. Her story is one of resilience and support for her family. And exemplifies the importance of Advance Care Planning conversations for adults, at any age. She has written several books in various genres. In her most recent book, Erythra Thalassa, Brain Disrupted she shares her journey, via poetry, through her son’s devastating hemorrhagic stroke.
Listen today and hear Annette talk about:
- The importance of books, music, fresh air, and most importantly, human interaction
- Why the title, Erythra Thalassa
- How important hope can be
- Why it’s important to put yourself in the shoes of the patient
- The importance of enjoying the little things
And check out the song her son, Jeremy wrote for his wife and daughters:
The Time I Spend With You
Find Annette on Facebook, Twitter, LinkedIn, Pinterest
Ken Stern is not only the host of a new podcast aiming to help family caregivers, he is a member of the Sandwich Generation. The new podcast, When I’m 64, is produced by The Longevity Project, an offshoot of the Stanford Center on Longevity. By sharing family caregiver stories, they hope to help other family caregivers understand that there are many ways to provide care and help our aging loved ones and the family caregivers.
The Stanford Center on Longevity is the world’s leading think tank on longevity. They understand that greater longevity brings greater challenges, especially because our society is not set up to assist with the needs of a larger, aging population. When I’m 64 is hoping to help.
Listen as I talk with Ken to hear:
- How many family caregivers there are in the US
- Why you should NOT feel alone if you are a family caregiver
- What is needed to support family caregivers in longer-term roles as our society ages and lives longer
- Why employers must support their employees in their family caregiving roles
- What is needed to optimize longer lives
- How conversations about this can help you and your family come up with solutions that work for you
And check out When I’m 64 to hear some beautiful caregiver stories that may help you in your journey!
I’m sure you’ve heard of essential oils. A lot of people think they’re witchy or woo woo-ey. But the reason they can be so effective is they are made up of chemical compounds and work at a cellular level. As in science! Denise Joswiak is not only a certified aromatherapist, she is also a registered nurse. And she uses evidenced based research to guide her aromatherapy practice. But she also says that most people who share essential oils have a personal story to share. Denise shares her personal experience and her professional expertise with us, discussing the use of oils as palliative care options.
Remember, that palliative care is defined by the Center to Advance Palliative Care as specialized medical care for people living with a serious illness. It focuses on providing relief from symptoms and the stress of illness. The goal is to improve quality of life for both the patient and the family. Something essential oils can, and do offer.
Listen to today’s episode to learn:
- How essential oils can be used in the palliative care space
- What oils can help
- Things to consider when choosing essential oils
- What the difference is between essential oils and hydrosols (science!)
- What her research showed regarding the use of essential oils for nausea, anxiety, and pain
- How to find a certified aromatherapist
- How to earn CEU’s and become certified yourself
- How to get aromatherapy in your healthcare workplace
- some great suggestions for home made gifts!
You can find Denise here:
Essential Health MN, Instagram, and Facebook, or email her at info@essentialhealthmn.com
Other resources:
National Association of Holistic Aromatherapy Alliance of International Aromatherapists
Essential Oil Nurses; EORN
Right click here to download and save this episode to your computer
Life is inevitable. And there are moments in life that define the path you take. BJ Miller had one of those life defining moments in college. He became disabled after an electrical injury. It was his experience as a patient that led him to become a physician. He was ready to give up on medicine after becoming disillusioned by our healthcare system, when he became aware of, and began practicing, palliative care.
On today’s episode, you’ll hear what BJ has to say about:
- Mettle Health–online palliative care and coaching–how to work with your doctor to achieve YOUR goals of care
- How medicine can work together with other disciplines to improve the things that can’t be fixed
- How a crisis can move you (patient and family caregivers) to a place of new invention
- Why he thinks Covid has created an opportunity to help more patients and families decrease suffering
- Why it is important (on so many levels) to support family caregivers
And check out these resources:
A Beginner’s Guide To The End The Center for Dying and Living
Follow BJ on Twitter
What happens when you are a woman who is finally figuring out her life, in a committed relationship, about to have a baby, and then diagnosed with cancer? Jaime literally lost her voice for months while undergoing treatment for throat cancer, so she began writing. blogging her experiences and feelings.
Listen today to hear Jaime’s story and find out:
- Why being authentic is important (or should be) to you
- Why you need to know what palliative care is
- Why (if you are a parent) you are an aging parent, no matter how old you are
And maybe start asking yourself:
- How are you showing up for your life?
- When do you feel like you are happiest?
- Conversely, when do you feel at your worst?
Find Jaime here:
Jaimethinksaydo.com, Instagram
Death doula, and author, Rebecca Munn is an optimist. She was raised by optimists. Yet she encourages conversations about death. And talks to people about cancer. Why? Because it’s who she is.
Her first book, The Gift of Goodbye: A Story of Agape Love , she shares the journey she took with her mom after her second cancer diagnosis. Rebecca talks about the challenges that so many caregivers face: juggling parenthood, career, and geographic barriers to provide care to her Mom, and Dad, at different times. In her newest book, All of Us Warriors: Cancer Stories of Survival and Loss , she talks with others about their cancer experiences. And what they want others to know.
Listen to this episode to learn:
- What agape love is
- How you can be an optimist and talk about this stuff
- An important question you can ask your dying loved one
- Why staying engaged with others is important
Facebook, Twitter
Other resources Rebecca mentions:
Parnasus Books
Signs by Laura Lynn Jackson
Big Magic by Elizabeth Gilbert
How do you feel about being dismissed? Or ignored. Or being told what to do…This is often how our aging population is treated. And if we don’t change things, this will happen to you as well.
Stephanie Erickson is a social worker, certified Alzheimer’s disease treatment specialist, and author of a new book titled Plan For Aging Well. Check out this episode of engAGING Conversations, and learn about the importance of:
- early communication about wishes (verbal and written)
- the financial impact on family caregivers
- “Team caregiving”
- becoming an advocate for your loved one AND yourself
Follow her on Facebook, LinkedIn, and Instagram
Hey Stranger, where ya been? I know I’ve been in absentia for the better part of the last 3 months and really my only excuse is…Covid.
No, I didn’t have it, but I have been struggling with thoughts about what I’m going to do with the rest of my life. As we all know, life has changed. And in some ways for the better. So I thought I’d fill you in on my summer, and where engAGING Conversations is headed.
Stay tuned and find out more about:
- palliative care
- dōTERRA essential oils
And thank you
Samuel Shem, aka Stephen Bergman MD, wrote The House of God after surviving his medical residency. 40 years later, he reprises the characters for his most recent novel, Man’s 4th Best Hospital.
He says the best way to talk about history is through fictional writing. In Man’s 4th Best Hospital, he shares his observations for the need for healthcare reform, using the humor, enthusiasm, sadness, and honesty of some of the beloved characters from The House of God. This book will definitely give you an insiders view of what’s wrong with today’s healthcare system, and why physician (and nurse) burnout is so common.
Listen today and find out:
- What the electronic medical record is really about
- What he feels is missing in healthcare
- What is is going to take to fix it
- What unique class he teaches to NYU med students
Joan Lunden is a well-known, influential public figure and author. I talk with her today about her family caregiver experience, as well as her newest book Why Did I Come Into This Room? an honest look into what it’s like to be an aging woman.
Listen today to hear:
- Why Joan is the national spokesperson for A Place for Mom
- How to start a conversation with your parents
- What’s the secret of life? (According to Joan’s mom)
- Why you should write your own eulogy and obituary
- Why we need to talk candidly about changes associated with aging
Find out more about Joan Lunden find her other books, and follow her on social media Facebook InstagramTwitter
Do you have a loved one in an assisted living or long-term care facility? If you do, you need to listen to this episode. Mike Eidsaune, founder and CEO of Care.ly, tells about this communication tool.
Find out:
- What Care.ly is
- Who it is for
- How it can be used to improve communication
- Why it is beneficial to not only families, but professional caregivers
Links to Resources:
Care.ly
Granpad
Brookdale Senior Living Communities
Many of us have talked about end of life wishes. I’m willing to bet though, that many have never considered anatomical donation as an option.
Mark Zavoyna is the Operations Manager of the Anatomical Donor Program at Georgetown University School of Medicine. Listen and learn today:
- What is anatomical donation
- Who can donate?
- Who cannot donate?
- Why you would donate
- Associated costs
Need more information?
Do an internet search state of Florida anatomy board–they have a comprehensive list of US donor sites, contact a nearby medical school’s department of medicine (anatomy), or email Mark
Latest updates regarding lockdown in Rincon, Puerto Rico including information on life and availability of testing here
How do you want to live? The goal of The Conversation Project is to get people talking about this. And they are using the non-medical community to get these conversations started. The focus is on values, not medical terminology.
Kate DeBartolo, who oversees the Conversation Project, shares her expertise with us about having end of life conversations. Find out more on today’s episode:
- The effects of end of life conversations on depression rates
- Who should have these conversations
- When they should have them
- What is it about dying home that is important to people
- What role does a loved one play as a proxy or healthcare advocate
find out what resources are available here:
The Conversation Project Find them on Facebook , Twitter, YouTube
Update on the last week and tips about how to wear a mask and gloves, where to find more GOOD information.
Update on the last week and tips about how to wear a mask and gloves, where to find more GOOD information.
A daughter’s plea: Doctors must stop shirking palliative care. No beating around the bush there. A great article about Aimee’s experience as a family caregiver for her Dad.
Aimee shares her experience today as well as suggestions for making things better for all. Listen and learn about:
- Barriers to Palliative Care
- Goals of Care Conversations
- Five Wishes
- Why adult medicine should be practiced like pediatrics
Follow Aimee on Twitter and find her soon at aimeegindin.com
Planning ahead is important. But how do you plan ahead when you don’t know what you need? You enlist the help of a geriatric nurse consultant.
Jeri has spent her nursing career in the end of life space. From an early age, she was drawn to work with the elderly. And some personal experiences with dementia and death further fueled her passion. She offers her expertise as a geriatric care consultant on today’s show.
Tune in to today’s episode and learn:
- What a geriatric nurse consultant is
- Why you would need one
- Why it’s important to talk about choices before the need arises
- Why your aging/dying loved one needs an advocate
- Learn some strategies for communicating with your loved one with dementia
- How to find a geriatric nurse consultant
Find Jeri on LinkedIn
Find out more about EndWell
Day one of lock down in Rincon, PR as we try to slow the progression of the COVID-19 pandemic.
I will be doing a daily update to let the rest of the world know what's happening here. Please share. And take care of yourself.
Jennifer Moore Ballentine is the executive director of the Shiley Institute of Palliative Care at California State University. She recently wrote a very interesting piece about just the role of palliative care in the midst of the COVID-19 pandemic.
Please tune in to this very important episode and get an education, not only about palliative care, but hear more about:
- social distancing
- flattening the curve
- social isolation
- having conversations with your loved ones
Find out more about the Shiley Institute here:
csupalliativecare.org or call 760-750-4006
Read Jennifer’s full article:
The Role of Palliative Care in a COVID-19 Pandemic
Do you believe in life after death? If you do, you’re going to love this interview. If you don’t, you should listen to this interview. I firmly believe that Debra Diamond can decrease your fear of dying.
Debra Diamond is a former Wall Street money manager, turned psychic medium and death doula. On today’s show, she shares with us her experience as a death doula and hospice volunteer, sitting with the dying. Find out from her:
- what the difference is between a psychic and a medium
- what happened that brought our culture so far away (and afraid of) death?
- About the difference between being unresponsive and being unconscious
- what loved one’s in spirit do for the dying
Follow Debra on Twitter and Facebook
And get her books:
Diary of a Death Doula: 25 lessons the dying teach us about the afterlife
Life After Near Death
I love to talk to nurses. We practice in all areas of healthcare, so you can find a nurse to talk to for just about anything. Julianne is an expert RN, end of life doula, and advance care planning facilitator. She can help individuals identify their personal goals, options, and choices when it comes to end of life.
Listen today to learn:
- What an end of life (death) doula is
- What advance care planning facilitators are and how they can help you and your family
- How many people over aged 65 will arrive in a hospital unable to speak for themselves, i.e. why this conversation is so important…
- When YOU (we) should start advance care planning
Find Julianne here:
juliannemcdevitt.com and Facebook
Resources:
The Story of LaCrosse WI (episode 15 of engAGING Conversations)
Being Mortal by Atul Gwande
Are we taking better care of our dying family members than we were 30 years ago? It’s a question I ask end of life expert, Barbara Karnes RN on today’s episode. She has been in this space, almost since the beginning of the movement, so she should know better than anyone. Find out the answer to this question and more:
- What is the key to reducing fear when talking about death?
- Are families well supported by hospice today?
- What is the most common way we die?
- Is death painful?
Find Barbara on Facebook, Instagram, LinkedIn, Twitter, YouTube
And get her booklets:
Gone From My Sight–The Hospice Blue Book
Pain At End of Life
and other resources on her website
After a holiday hiatus, I'm back to let you know what'g going on here at engAGING Conversations, and to ask for your help and prayers for the people of Puerto Rico (listen. It will make sense). Happy New Year!
Have you been wondering where I am? I apologize for my absence. It was not planned. It just kind of happened.
Listen in today to find out what’s going on behind the scenes. Find out where I’m going next week, (End Well Symposium) and how you can go too!
I’m looking forward to meeting several people who I have already interviewed here on engAGING Conversations:
- Dr. Shoshana Ungerleider
- Michael Hebb
- Dr. BJ Miller
- Dr. Michael Fratkin
- Sallie Tisdale RN
and a few I hope to get the opportunity to interview:
- Tim McGraw
- Meghan McCain
- Dr. Lucy Kalanithi
All of whom are speaking at the event!
Wishing you all a Happy Thanksgiving with your family and friends. Please consider 2 things this week:
- Start the conversation with your family this Thanksgiving.
- Help end senior hunger in America and make a donation to Meals on Wheels
Who wants to party?!? There is a BIG festival happening in San Francisco October 24th-November 3rd. Did I mention it’s a death festival? Its’ actually a festival to get people talking about death, in an effort that we may live more fully in the present. Doesn’t that sound awesome???
Listen today to find out more about:
- ReImagine End of Life San Francisco
- ReImagine End of Life New York
- A movement among millennials to explore death and celebrate life
- The Debut of Brad’s song “Why Wait”
- Why you should watch Disney/Pixar’s Coco
If you want a festival in your city, contact ReImagine End of Life
Follow them on Facebook Instagram
And check out This Party’s Dead with Erica Buist_064
I’ve been a professional caregiver for the last 35 years. I realized recently that I have also been a “professional” family caregiver for the better part of the last 17 years. I don’t work in a bubble, teamwork is everything. But in spite of my professional knowledge, it’s amazing the things that can happen that you aren’t quite prepared for. I honestly don’t know how families with non-medically trained people manage.
Listen today to learn from my most recent caregiving experience. I’m going to share with you 5 (no, 6) things you should know about providing care to a family member after major surgery.
In addition, there are some things happening in the month of October that you should know about:
- It’s Long Term Care Planning Month. To learn more, listen to: Understanding Long Term Care Insurance with Hone Leveen_025
- Medicare’s Annual Election Period begins 10/15. Hear more: Medicare’s Annual Election Period with Danielle Kunkle_031 and Medicare Updates with Danielle Roberts_080
- ReImagine End of Life, a life/death celebration happening in San Francisco, beginning October 24th. In next week’s episode I will be interviewing Brad Wolfe, co-founder. You’ll also get a sneak peek (?listen) of a song he will be debuting! Don’t miss it!!
And although not in October, I will be attending the End Well Symposium, happening in San Francisco on December 5th. Learn more about it here: End Well with Dr. Shoshana Ungerleider_056, and JOIN US!!
Medicare is the US National Healthcare program for people over 65. It’s comprised of two parts: A & B, which cover ~80% of costs. The rest is filled in with things called Part C, D, and Medigap, which are supplements you can sign up for during the yearly election period. There are lots of things to consider when making decisions about these moving parts. Because making the wrong choices can cost you money.
The annual election period runs from October 15th to December 7th. Medicare recipients receive information in the mail a few weeks prior to this period. There is also a lot of commercial attention on the TV.
Danielle Roberts is a medicare insurance expert and is going to help us understand how it all works. She first appeared on engAGING Conversations last year, on episode 031, so I encourage you to listen to that episode too.
Listen to today’s episode to learn:
- When you need to sign up for Medicare
- What the Annual notice of change is and why you need to pay attention to it
- What the different parts of the Medicare Program are
- Things to consider when choosing your plan
- Why you should consider a prescription drug plan even if you don’t take prescription drugs
- What Medicare does not cover
Find out more about Danielle and her company at
Boomer Benefits and follow them on Facebook Twitter Instagram
There are SO many things to consider when planning a funeral, why do most of us not plan ahead? It’s traumatic enough when a loved one dies, why do we wait until it happens to figure out the specifics, when time could be better spent supporting each other in our grief?
John Manke, RN and funeral director, gives us a tutorial regarding things to consider when planning a funeral. There are more things to consider than you might think. And how do you know what your loved one would have wanted if they never told you?
Listen to today’s episode and learn about:
- disposition of the body
- organ/tissue donation
- options for ceremonies
- death benefits
- why you need to do your homework (and save money!)
- what can happen if you don’t plan
John’s business Manke Memorial is happy to help if you are located in North Jersey. Find out more about organ and tissue donation at The Sharing Network
Probate court guardianship was set up to protect people from family members out to take advantage of them. What has happened, however, is that SOME court appointed guardians have figured out how to work the system, and take advantage of elders with assets.
Dr. Sam Sugar says ageism is to blame, in part. Squabbling families feed into this. Our legal system is supposed to help people who can’t get it from other sources. But court appointed guardianship can be quite the opposite.
He and his organization Americans Against Abusive Probate Guardianship, are on a mission to educate, advocate, and legislate to change this.
Listen today to find out:
- What is equity/probate court?
- How can elder guardianship abuse happen?
- How many people may be affected by this…?
- What is incapacity, and how can this effect an outcome?
- What can you do to prevent this happening to you or someone you love?
- Why once court appointed guardianship has been established, it can be extremely difficult to expunge…
Find out more here:
Guardianship Abuse and the Elderly : The Perfect Crime
AAAPG.net
The Guardians
There are seven states, plus Washington DC, where Death with Dignity is currently legal. There are bills pending in seven other states. Massachusetts is one of them. Massachusetts States Senator Will Brownsberger tells us about the bill there. And once again, you will see, that there is often a personal reason why people are in this end of life space.
It’s called different things in different places. Here in Massachusetts, the bill is titled S.1208 End of Life Options. In Colorado, the home of my last 3 guests, it’s called Medical Aid In Dying. Regardless of it’s name, it allows physicians to legally prescribe medication that a terminally ill individual can self-administer to hasten their death.
It’s controversial, and definitely not for some (for most I would imagine). But for the select group of competent people who choose it, I believe it should be allowed. Listen in and learn:
- Why Senator Brownsberger is an advocate
- what the barriers are even in states where it is legal
- what you can do to promote legislation in your state
This week’s episode wraps up my talk’s with a group of healthcare providers from the University of Colorado’s Cancer Center, about their experience with Medical Aid in Dying (MAID), or Death with Dignity.
Dr. Ross Camidge wrote an article titled, Why I Wrote the Rx That Helped My Cancer Patient Die that was published in The Huffington Post in June. This is how I became aware of this amazing team. I talked with Joan Hart, the oncology social worker, Dr. Jon Treem, the palliative care physician, and today, with Dr Ross Camidge, the medical oncologist, about their experiences with patients who requested Medical Aid in Dying.
We talk about a lot, including:
- what the process is to request MAID
- how clinicians feel about this request
- what his team has learned from the patient’s they have received
- things for clinicians to consider in states where legislation is pending
Oregon was the first state to legalize Death with Dignity Click on this link to view recent statistics and their data summary
Stay tuned for next week’s episode. I am talking with one of my state (Massachusetts) senator’s about the bills currently under review (H.1926/S.1208), to legalize this in Massachusetts.
Whether you approve of Death with Dignity, or “medically assisted death” or not, it’s legal in 7 states and the District of Columbia. Just because it’s legal, it doesn’t mean you need to partake. And if you do request it, that doesn’t mean it’s easy.
In today’s episode, Dr. Jonathan Treem, a palliative care physician affiliated with the University of Colorado Hospital Cancer Center, talks us through the process of Medical Aid in Dying.
You’ll also learn:
- The barriers to medical aid in dying (even in states where it’s legal)
- three things people who request medical aid in dying are encouraged to do
- three suggestions for clinicians in states where Death with Dignity laws are pending or forthcoming
Check out the bills currently undergoing review in Massachusetts
End of Life Options Act
Death with Dignity is legal in 7 states and the District of Columbia. At least 8 other states have legislation under review, including Massachusetts, where I live.
So I decided to speak with some practitioners who have experience with patients requesting medically assisted death. This interview is the firs of three with healthcare providers from the University of Colorado Hospital’s Cancer Center.
Today I talk with Joan Hart, the social worker from the team. She provides insight regarding:
- medical aid in dying (MAID) in Colorado
- who is a qualified terminally ill adult
- why some patients choose this option
- the impact this decision can have on providers
Did you know that many medicare recipients would have to choose between medication and housing costs or even food, if they had a serious medical condition? Healthcare costs is a large contributor to bankruptcy filing in the elderly.
Could your parents (or you) afford medication that cost 10, 15, 20 thousand dollars or more annually to treat a serious medical condition? Me either.
The PAN Foundation is a 501(c)(3) non-profit organization that provides assistance to over 200 thousand people a year. They offer grants to subsidize prescription medication costs for 70 different diseases.
Listen to today’s episode to find out:
- who qualifies for a grant
- how to apply
- what you can do to decrease out of pocket expenses
- where you can find assistance to figure these things out
Resources:
National Council on Aging
benefitscheckup.org
Download the app FundFinder to help you find financial assistance from charitable organizations
Every day people get thrust into the role of family caregiver. Sometimes it’s a slow acclimatization, sometimes it’s like getting shot out of a cannon. Life can change on a dime. Would you know what to do if a medical emergency happened to a close family member?
It’s not a given that you won’t become a family caregiver until something happens to one of your parents. This is one of the lessons of this story. Donna O’Donnell Figurski never thought it would happen to her. She talks today about the struggles (and triumphs) she and her husband encountered as he suffered and they recovered from a traumatic brain injury caused by a hemorrhage (stroke).
The other lesson? People often don’t even recognize that they ARE family caregivers! Listen to Donna discuss her experience and her book, Prisoners Without Bars
Donna share what she learned from their experience, as well as two tips to family caregivers. Listen in and find out what can help you through the challenges.
Find out more about Donna Figurski and her work with traumatic brain injury here:
survivingtraumaticbraininjury.com where you’ll find links to her blog and radio show, Another Fork in the Road
Follow her on Social Media: Facebook Twitter Pinterest
And find out here how you can help yourself, as well as why you should, even if you’re not a family caregiver (yet). teachyourselfwealth.com
What are you doing for elders? It’s a question Dr. Louise Aronson suggests we ask. Whenever there is talk about changes that includes adults and children. And it should be important to you, no matter what your age, because if you don’t die prematurely, you’re going to live to be an elder.
Explore other topics related to Elderhood in this interview, including:
- Where the US Healthcare system is ranked globally
- What a geriatrician is
- Why you may not be able to find one
- When you should transition your care to a geriatrician
- What is needed to improve the care available to our aging population
Check out her website, louisearonson.com
And follow her on Twitter Instagram YouTube
Re-released in an effort to give visibility to Tina and her project, with a public apology from me…Here you go Tina!
Tina is a photo artist who had a significant fear of death. A $2 book on the clearance rack changed her life. She no longer fears death, and has taken on a Ph.D project to let others talk about their beliefs about death and what happens when we die.
She shares these stories (and her brilliant portrait photography) on her website
The Death Letter Project
She is a pioneer. She wants to decrease the fear people have around death. Breaking down barriers about end of life conversations. What is death? What happens when we die? Because of her experience reading/talking with others about near death experiences, she has changed her beliefs.
We need more pioneers in this area. Death is a normal part of the circle of life. We should be able to talk about death as easily as we talk about birth, weddings, graduations…any other normal life process.
If we can have these conversations, we can diminish our cultural fear of death, and encourage more conversation about what individuals really want (or don’t want) when faced with a life limiting illness.
It’s all about quality, whatever that means to an individual, and our job as family members/friends/advocates is to uphold the wishes of those we love. Death is an amazing teacher.
You can connect with the Death Letter Project on the website, or the Facebook Page:
@deathletterproject
Or Instagram
deathletterproject
You can find Tina’s photography work here:
tinafiveash.com
It seems that no one sees “normal dying” anymore. The news and social media focus on tragic and unusual deaths. We don’t talk about death and dying because it scares people and makes them uncomfortable.
Having the dying process described to you is way less terrifying than what you can conjure up in your own mind. In fact, it can be comforting. Just ask Dr. Kathryn Mannix’s patients. Even physicians can learn from her. They can be so busy trying to stop death, that they don’t “see” the pattern of approaching death. And see how intrinsically calming recognizing this pattern can be to a family.
She has been helping people navigate end of life and death for decades, and “is on a mission to reclaim public understanding of dying”. Her book With the End in Mind is an anthology of stories that clearly demonstrates her work. And I can’t recommend this book enough! To both healthcare professionals AND the general public.
Find out in today’s episode:
- How death is like birth
- What Cognitive Behavior Therapy is
- Why knowing what to expect can make the experience easier
Follow Kathryn:
With The End In Mind Her website with lots of great resources!
Twitter Facebook Instagram
Why would physicians with successful practices and good reputations share experiences that can’t be explained by science? Dr. Scott Kolbaba shares the answer and their stories in his Amazon bestseller book, Physicians Untold Stories. This may seem a bit off topic, but trust me, it’s not.
Listen to Dr. Kolbaba share a few of the stories and find out about:
- coincidences…or not…
- premonitions/visions
- HOPE!
Follow Dr. Kolbaba at PhysiciansUntoldStories.com or on Facebook as the book becomes a television show. And stay tuned for book 2!
When we take time off from work to care for our families, whether it’s to raise children or care for an aging parent, many of us don’t realize the long-term financial impact this has. This impact has a steam roller effect, which can last the rest of your life.
When you can’t cut out any more “extras” from your expenses, the only option is to earn more. Learning how to generate additional income, into retirement is going to be a necessity for most of us. But how?
Lisa Linfield is a Certified Financial Planner, on a mission to teach one million women about money. Listen to this episode to find out from Lisa:
- What percentage of us will have enough money to live in the same manner as we did before we retire (it’s scary…)
- When is the right time to start a new business?
- Why, even if you do have enough money, you should consider a side hustle?
- How do you even get started?
Check out her course to learn how to start your own side hustle and earn more money. Enrollment begins August 6th! workingwomenswealth.com
Follow Lisa:
Facebook Twitter Instagram
Eldercare Practice Leader at Torchlight, Lenore Tracey is on the show today. She explains what Torchlight is and does in ways that employees and employers should understand and seek more of.
Find out about Torchlight:
- The services they provide
- Why their services are good for not only the employee but the employer, and all of us
- How you can advocate for yourself and your family as caregivers
- Why these types of services are important to to our aging society
Find out more at Torchlight.care , listen to their podcast Eldercare Illuminated, and follow them on social media:
Facebook Twitter and LinkedIn
Why do physicians feel unprepared to initiate conversations about end of life wishes and palliative care with their patients? I talked with two recent medical school graduates to gain some insight. And what I found out was both interesting and hopeful.
- Hear what medical students are asking for more of in their training
- Learn about goal of care discussions
- Understand why lack of communication is costly to both patients and providers
- Find out how palliative care can help improve the patient experience
Check out the documentary, Extremis on Netflix, to see first hand why communicating your wishes is so important:
A special thank you to Dr. Brian Emmert and Dr. Danielle Qing, recent grads of The Donald and Barbara Zucker School of Medicine at Hofstra/Northwell for sharing their thoughts and experience. Best of luck to you both as your begin your journey!
How do you overcome your fear of death? If you’re Erica Buist, you attend 7 death festivals around the world where cultures celebrate death. Not to say they don’t fear it like the rest of us. They just see death as a normal part of life.
In today’s episode, you will find out:
- What agoraphobia is and 3 ways to help overcome it
- Why an academy award winning Disney movie can help you understand a “death-tival”
- How you can join Erica on her journey to the last 3 death festivals she is writing about
Pre-order Erica’s book here:
This Party’s Dead and follow her on social media:
Facebook Twitter Instagram LinkedIn
John Cleese said “life is a terminal illness that is sexually transmitted”. He’s not wrong.
How we die matters. Or at least it should. Did you know you have a choice to de-medicalize your dying process? This can actually improve your quality of life without necessarily shortening it.
The addition of palliative care to medical intervention, or instead of medical intervention is something you can opt for. But where does the responsibility lie for having conversations about these choices?
Listen to today’s episode to hear Kathy Kortes-Miller PhD talk about:
- Aging and health
- Educating our healthcare workforce
- Why you should take responsibility for starting conversations with your healthcare provider
- Canada’s Medical Assistance in Dying (MAID)
Get Kathy’s book here:
Talking About Death Won’t Kill You: The Essential Guide to End of Life Conversations
Follow her on Twitter
Have you heard the phrase “the devil is in the details”? Well, THEY are right! Lori LoCicero learned the hard way. Lisa Pahl has learned from years of professional experience. Talking about end of life wishes ahead of time, makes things less stressful when death is near. Do you think you “have your affairs in order”? You may well not. There is a lot to consider about your own death.
Lori and Lisa have created a game called The Death Deck to help you break the ice and start those difficult conversations with loved ones. And also get you thinking. They use humor to ease the tension, and it works.
Listen and learn:
- If you “have your affairs in order”
- why you should “get your affairs in order”, no matter how old you are
- something I will NEVER do!
Purchase The Death Deck here
Find Lisa and Lori on Social:
Facebook, Instagram, and Twitter
Do you remember Hawkeye Pierce? That surgeon from MAS*H played by Alan Alda? He was a surgeon with great hands and wit, but with even better communication skills with his patients.
Alan became interested in communication when a life-long interest in science led to his hosting Scientific American Frontiers for 11 years on PBS. The Alda Center is the result of his combined interest in science and communication, and is celebrating a 1o year anniversary.
Dr. Susmita Pati, the chief medical advisor for the center, talks with me about their mission. And how they accomplish it. They use improvisation skills taught to actors to helps professional caregivers improve their skills.
Listen to today’s episode and find out:
- how an acting workshop can improve your communication skills
- why physicians (and other healthcare providers) often are not prepared to have difficult conversations with you
- what you can do to improve communication with your healthcare provider
Follow the Alda Center on Social Media
Facebook, Twitter, YouTube
Does life imitate art or vice versa? Ava Roy and Courtney Walsh are members of We Players, a San Francisco based theater group. I talk with them about this, and more, in today’s episode. The play, Mother Lear uses the words of Shakespeare in this 2 actor production about a professional woman with dementia and her daughter.
This one act play, both intimate and personal, transitions to an interactive Act two. The cast of 2 open it up to the audience and encourage them to share their feelings. If you are a fan of Shakespeare being introduced to a difficult topic, or seeking knowledge about a difficult topic and become a fan of Shakespeare, you won’t be disappointed!
Listen to this episode and discover:
- What the one thing in life is that we all share.
- What King Lear and dementia have in common.
- Why the arts are so important for patients with dementia.
Find out more about We Players and Mother Lear on the website weplayers.org
And follow them on social media
Facebook, Intstagram, Twitter
When I saw that Cabot Creamery was sponsoring the Live Well Die Well Tour , I was curios. Roberta MacDonald, SVP of marketing for Cabot, joins me today to share their why.
If you go to the Cabot website, you will find lots of resources, such as the book JoJo’s Answers About Deatha book geared for children aged 5-9.
Check out Last Rights: Rescuing End of Life from the Medical System, a book authored by Roberta’s friend Stephen Kiernan.
You’ll also find that Cabot is a B-Corporation. Find out what that means, and why you should do business with them and other B-Corps.
Listen to this episode to find out:
- What a Death Doula is, and where you can get certified to be one
- Why you need one
- Why farmers “get” death and dying
- What Roberta thinks happens when we die
Dr. Karen Wyatt is a hospice physician, best-selling author, podcaster, and speaker. Her work at the bedside of the dying has provided her with life lessons she shares with us today.
In this episode, find out:
- How preparing now can improve your life
- Why your physician may not talk with you about your end of life wishes and death
- Statements you can make to help have a conversation with your physician
- One great tip to help you start the conversation with your parent(s)
Learn more about Dr. Wyatt, her work and resources at:
eoluniversity.com
Get her book here:
What Really Matters: 7 Lessons for Living from the Stories of the Dying
Find her on social
Why is it so hard to say that someone died? We use the terms “passed away”, “departed”, “crossed over”, among others because we can’t say died.
Sallie Tisdale is a straight shooter. She uses her experience as a writer, a Zen Buddhist, and an RN, to educate about end of life and care of the dead in her book Advice for Future Corpses: A Practical Perspective on Death and Dying
Check out today’s episode and find out:
- What the most common fears associated with death and dying are.
- The impact burial and cremation have on our environment.
- Things you should know about hospice.
Although we didn’t discuss this, Sallie mentioned PACE programs. I will do an episode on PACE in the future, but in the meantime, check out the link for more information.
Palliative care is a relatively new specialty. And it, just like other medical specialties, is siloed. And the issues go beyond lack of patient education. There is a lack of physician training too.
Dr. Shoshana Ungerleider is on a mission to change that. To make the end of life experience better for everybody. With her help, Extremis and End Game are produced, and air on Netflix. These documentaries give us a “both ends of the spectrum” view of death.
Because of these issues, she has started a non-profit, called End Well ,to bring all involved industries together to talk, and figure out how to change the landscape around dying. A symposium to “unsilo” palliative care.
Listen and find out:
- what you need to do if you don’t want aggressive medical care at the end of your life
- the cost that family caregiving has, not just on the family, but on the economy
- how you can make a difference in the life of your loved ones and yourself
Follow Shoshana on social:
FB: @endwellproject
Twitter: @ShoshUMD
IG: @endwellsf
Technology and advances in medicine have increased our longevity. As a result our society is growing older and frailer. But our society is no longer set up to hold us in our frailty.
The need for palliative care services is growing, and Resolution Care Network is setting the tone for outstanding care. Listen to Dr. Michael Fratkin and find out:
- What palliative care is
- How Resolution Care Network is reframing Palliative care
- How you can advocate for yourself and your loved ones to get these services
- How you can help Resolution Care Network help more people
Check them out on Social
Facebook @resolutioncare
Twitter @michaeldfratkin
email Michael directly at
michael@resolutioncare.com
Virginia Morris, a medical journalist for decades, describes caring for aging parents as a continuum of decisions. Just because the “paperwork” is in place and you “know” what your parent wants, it doesn’t prepare you for when the time comes.
End of life is a place you get to, but the path is not straight and the lines are often blurred. In today’s episode, we discuss:
- the exploitation of the elderly
- how hard this period of your life is, no matter how prepared you are
- the hard questions you should ask
- what you should make time to do
Find more about Virginia and her books How to Care for Aging Parents and Talking About Death on her website careforagingparents.com
Death is coming for all of us. Are you prepared?
-
Have you thought about what you want or don’t want if you were faced with a terminal diagnosis?
-
Have you shared any of this with your loved ones?
All important questions to ponder. And start talking about with your family.
If you are a caregiver, are you taking time out for yourself? Being a martyr is no good for anybody.
Professional caregiver and author Meina Dubetz RN shares her wisdom about caring for people and yourself at the end of life in this interview, and her book:
When Death Comes Knocking for your Patients
A great resource for professional AND family caregivers
Follow Meina on
Tina is a photo artist who had a significant fear of death. A $2 book on the clearance rack changed her life. She no longer fears death, and has taken on a Ph.D project to let others talk about their beliefs about death and what happens when we die.
She shares these stories (and her brilliant portrait photography) on her website
The Death Letter Project
She is a pioneer. She wants to decrease the fear people have around death. Breaking down barriers about end of life conversations. What is death? What happens when we die? Because of her experience reading/talking with others about near death experiences, she has changed her beliefs.
We need more pioneers in this area. Death is a normal part of the circle of life. We should be able to talk about death as easily as we talk about birth, weddings, graduations…any other normal life process.
If we can have these conversations, we can diminish our cultural fear of death, and encourage more conversation about what individuals really want (or don’t want) when faced with a life limiting illness.
It’s all about quality, whatever that means to an individual, and our job as family members/friends/advocates is to uphold the wishes of those we love. Death is an amazing teacher.
You can connect with the Death Letter Project on the website, or the Facebook Page:
@deathletterproject
Or Instagram
deathletterproject
You can find Tina’s photography work here:
tinafiveash.com
Being raised Mormon started Amy Wright Glenn on a path to religious/spiritual understanding at an early age. This path led to learning, teaching, and guiding.
In this episode, find out:
- How talk of death and dying came to be so “taboo” in society
- What it means to “hold space”
- What is a Death Doula
- Why the medical community needs to change the way it looks at death
- How you can get a year’s membership to The Institute for the Study of Birth, Breath, and Death for $30 (a$90 value!)
Check out Amy’s books:
Holding Space: On Loving, Dying, and Letting Go
Birth, Breath, and Death: Meditations on Motherhood, Chaplaincy, and Life as a Doula
Find Amy on Social Media
Facebook @amywrightglenn
Twitter @amywrightglenn
Kelli is a devoted daughter. She became a caregiver for her mom when she was in her 20’s and her Mom was in her 50’s. She also had a 16 year old brother at the time. She didn’t know she was a family caregiver, she just thought she was doing what daughter’s do.
Her years of caregiving exposed her to so many issues other family caregivers come across, that she changed careers to help others. After 11 years operating a home care business, she has branched out yet again. Her online company, TheDevotedDaughter.com offers resources and support for other family caregivers.
Kelli tells us what she thinks is the number one issue that affects families. She’ll also share with you some other tips for making this time of life easier for you and your loved ones.
Stay tuned for her book Always Her Daughter , coming out in March.
You can find Kelli on her website The Devoted Daughter on Instagram and Facebook. Or you can email her directly at kelli@thedevoteddaughter.com
The death of her father shocked Ann Neumann. Not that he died, but the first hand experience of death. Was his death "a good death"? This set her on a path to learn. And now she is on a path to enlighten others.
In her book, The Good Death: An Exploration of Dying in America she shares her experiences as a hospice volunteer.
No matter what we do, the end is coming for us all. By writing and talking about this she is trying to take the morbidity out of death. We have been programmed to "fight", but at what cost?
Ann believes systemic change is needed; that conversation isn't enough. Learn more about:
- the social injustice that exists in dying
- the pluses and minuses of hospice
- the financial impact on family caregivers
- the need for better education and training for our medical providers
- the need for policy changes to affect the above
You can follow Ann on Twitter @otherspoon
or email her at otherspoon@yahoo.com
There are so many things you don't know that you don't know when it comes to aging. That's why it's so important to hire an elder care attorney.
Elder attorneys are not estate attorneys. Elder attorneys are for the living. Estate attorneys are for the dead. Listen to Cathy explain just a few of the reasons you should enlist the services of an elder care attorney. You'll find out:
- Who needs a Power of Attorney (both medical and financial)
- Why you should have an alternate power of attorney
- What can happen if you don't
- What filial support laws are and why you should know about them
- Why urinary tract infections came up in this episode
Find out more about Cathy on her website cathysikorski.com
Her books: Showering with Nana: Confessions of a Serial Caregiver
Who Moved My Teeth: Preparing for Self, Loved Ones, and Caregiving
Palliative care does not equal dying. With 25 years as a palliative care physician, Dr. Michael Barbato has spent a lot of time helping people understand that palliative care can actually improve the quality of life. The focus is on providing relief of pain and stress caused by serious illness.
Being in this specialty area, Dr. Barbato has spent countless hours at the bedside of the dying. And what he has seen and learned from them fascinates him. And has taught him empathy and compassion.
He and his wife, Ann, teach others how to be at the bedside of the dying. Through their midwifing death course, they teach healthcare professionals and laypeople how to care for both the living and the dying. By helping them acknowledge their own beliefs and fears, they can then sit with the dying without judgement, and be present.
Michael believes that end of life visions and dreams can be healing messages not only to the dying, but family members as well. He and Ann teach others how to be present with quality; treating death as a natural phenomenon. And helping providers learn to ask non-clinical questions, to help the dying and their families through the process.
Find out more about their work and where to find his books at Midwifing Death
Or email him directly @ michael.barbato6@gmail.com
Caregiving.comprovides support for family caregivers. It's a form of self-care that is readily accessible. Denise says self care looks different with you're in the throes of caring for a family member. And stress makes it hard to get the help you need. She believes the best day to look for support is on your best day.
Check out Caregiving.comtoday. Their services are diverse and you can pick and choose what you need. Some of the services they offer:
- Certified Caregiver Consultants
- An Annual Caregiver Conference
- Their Happiness Project
- Caregifters
- Chat
Find them on Social Media too
Find Denise on LinkedIn
It takes courage to give up your six figure career and hit the road in an RV. And that's exactly what Kimberly has done. She is on a mission to empower people to talk about death and end of life wishes. Through her death positive movement, she is learning that she is living well in the process.
Kimberly shares her personal story of loss, which was a reason for this leap of faith. She wrote a book called Bridging the Gap:Life Lessons of The Dying and has taken to the road to promote what she has learned.
Find out where you can see her as she travels the country in her RV with her German Shepherd, Raven. Check out the Live Well Die Well Tour and find out where you can see Kimberly on the road. And check out her podcast Death by Design and her TedX Talk
You can follow her on Linked Inand Twitter as Kimberly C. Paul and on Instagram, Facebook, and YouTubeas Live Well Die Well Tour
Vital Decisions is an organization that helps people with advanced illness figure out what their values so they can make decisions about their end of life care based on their preferences and priorities. Their engagement rate is 60-70% of clients they do outreach calls to. They have supported over 100,000 clients and their families and healthcare providers by enabling patients to make informed choices, based on their wishes for themselves.
This program is available through insurance companies. How do you find out if you have access to their program?
- call your insurance company and ask if they are working with Vital Decisions
- If not, ask what services they have available to help with advanced care planning
- Call Vital Decisions directly at 1-800-301-3984
Dr. Ducaine is also doing research regarding how healthcare professionals who work with patients approaching the end of life are supported, and how this impacts burnout and sustainability.
What she has found is not rocket science. Providers who take care of themselves (and/or are well supported at work), suffer less burnout and can do the work longer than those who don't.
This goes for family caregivers too. It is important to proactively create an environment which puts you in a good place, so you can be the best caregiver you can be.
2018 has been a whirlwind. I committed to putting out a weekly podcast since I launched in early March and I did it! Well, at least until now. I have had some incredible guests share their experiences as caregivers. All as a way to help you. Let's review the amazing resources available to you as a result of their willingness to share. And I will be back in January 2019 with more new episodes and valuable resources. Happy Holidays!
Judith was living and working on the West Coast when her parents' health declined, requiring her to return to Florida to be able to assist with their care. As a result of her family caregiver experience, she wrote a handbook which offers invaluable information to other family caregivers that she learned the hard way.
The Dutiful Daughter's Guide to Caregiving: A Practical Memoir
In her book, Judith shares invaluable information which reinforces the need to ask questions like:
- How long will my Mom/Dad be in the hospital?
- Are they admitted or under observation status?
And to consider the "real cost of caregiving", because it very often affects YOU!! There are 65 million family caregivers and 60% of them (mostly women) are working outside the home, while providing care. It is SO important to understand the complexities of this.
You can find out more by listening to this episode and checking out Judith at:
judithdhenry.com
and her Facebook page @judithhenrywriter
This (image in show notes) was hanging in the elevator at the assisted living facility my Mom spent the last 2 years of her life in. I thought it was appropriate for today's post. When your parent's are no longer alive, the holidays are different. But I'm grateful. They both instilled in me a love of family and time spent together during the holidays.
Today's episode is a gentle nudge (well, maybe an in your face nudge), to start the conversation with your parents this weekend. I share some statistics that reflect that fact that people want to talk about end of life wishes, but it isn't happening. So someone just needs to start the ball rolling. Why me you ask? Why not you...
Resources to help you:
My Last Soundtrack
Death Over Dinner
The Conversation Project
Please consider a donation to end senior hunger:
Meals On Wheels America
Happy Thanksgiving to you and yours!
With Thanksgiving right around the corner, I wanted to let you know a couple of things. Did you know that ~9 million seniors in the United States struggle with hunger? That's one in six; and that one in 4 live alone? I talk today with Ellie Hollander, the President and CEO of Meals on Wheels America. The organization is doing great things to assist our most vulnerable senior population. But they are struggling to keep up with the need.
There are over 5,000 individual Meals on Wheels programs nationwide. They serve meals to ~2.3 million seniors/year. That's a pretty impressive number. But what it doesn't tell you is that they are serving 16 million fewer meals than in 2005. And that some seniors are "wait listed", meaning they go hungry. Why?
It's all about the money. Ellies shared that <2% of all philanthropy is targeted towards seniors or aging related issues. Just for comparison, according to the US Census Bureau, the number of people age 65 and older will grow from about 15 percent to 17 percent between 2017 and 2020. And by 2060, that number will be more like 25%. These numbers just don't add up to a good outcome for seniors.
We really need to think about what that means for us as a society. There will clearly be a financial impact on everyone. Don't you think we should be thinking about (and more importantly) DOING something about this now? Meals on Wheels is a solidly based organization, that can assist seniors and their families in many ways:
- providing a nutritious meal to a highly vulnerable population
- provide eyes and ears for changes inside the home
- can provide feedback to loved ones and/or healthcare providers about changes
- can be part of the solution to keeping people out of the hospital and long-term care facililties
Meals on Wheels can serve a meal to a senior daily for less than the cost of one day in the hospital, or 10 days in a nursing home. AND, the infrastructure already exists!! Let's help this organization help our seniors and help us as a society do the right thing. How can you help? Thanks for asking!
- Donate--to the National organization or to a local program
- Volunteer--check the website for opporunities in your area
- Advocate--Talk to your local politicians about sponsoring legislation and/or philanthropists about making a donation
Information on how to do ALL of the above can be found on the Meals On Wheels Americawebsite. They are also active on social media. Facebook , Twitter, and Instagram
Wishing you and your loved ones a wonderful Thanksgiving
Connie Gropler was an RN with nearly 2 decades of experience, when she became a caregiver for her Dad and a support system to her Mom and the rest of her family. As her Dad began to deteriorate physically, she found herself lacking that support system from the medical community caring for her Dad. She doesn't blame them, rather, she feels that the system is broken. That there are not enough resources to support THEM. And I don't disagree.This is one of the many issues a family caregiver can face.
Another issue is the "hospice talk". It is important to understand that requesting a hospice evaluation doesn't have to mean death is imminent. The majority of patients are enrolled in hospice for 7 days or less, but services are available for 6 months, and that can be a rolling figure. Hospice can provide resources to provide comfort and quality for both patient and caregivers, that can be otherwise extremely difficult to acquire.
Until we makes some changes in the way the medical community addresses end fo life discussions and care options, we need to become advocates for our loved ones and ourselves. How can you do this when you are faced with becoming a family caregiver?
- Ask for help
- Be proactive--ask about alternatives to treatment options offered (think Palliative careand hospice evaluations)
- Call hospice yourself!
- Be aware that if you use FMLAto take an LOA to care for a loved one, you will need their physicians attestation and signature on these forms for your employer. It's one of those little things that can put you over the edge!
Check out the good work Connie is doing at Nurse Pollinators.com
You'll find her on social media Facebook: @nursepollinators Instagram: #nursepollinators
Nursing is a tough career choice. No doubt. But how much can you expect anyone to do? I talk today with another nurse. Three years into her career. We talk about what it's like to be a nurse. And how nurse burnout can affect YOU.
We also discuss Question one, on the Massachusetts ballot for the November 6, 2018 election. This question proposes a legal mandate for nurse:patient ratios in acute care settings. On the surface, it sounds amazing. Please listen to this podcast to hear a different perspective from two nurses. One early in her career, the other perhaps a little sullied.
Why is this important to you?
- It may impact the care your parent receives
- It may impact the care you will need to provide to your parent
- It may impact you as a patient
- it may impact you as an employee
- It may impact you as a tax payer
I hope you listen. And I would love to hear your take on this. Even if you don't live in Massachusetts. Because it didn't start here, and it likely won't end here, unless it does...
What do you want the end of your life to look like? If you haven't considered this, and talked about your wishes with your loved ones, you should. If you don't, you risk ending up on the "end of life conveyor belt". A situation that occurs when your family members can't agree about what you would want when you can't speak for yourself, they can't let you go, and when physicians offer the next treatment modality (because that's how they're trained and it's available), and don't know how to say no. Not a good thing, unless that's what you want. Where all stops are pulled, every last ditch attempted. Even in a futile situation.
Dr. Jessica Zitteris an ICU physician with years of experience. She comes from a family of physicians trained to treat and cure. It took an ICU nurse colleague, Pat Murphy RN, accusing her of "torturing" a patient to start her evolution. She began to understand that just because treatment modalities are available, it is not always in the best interests of the patient. That the need to prolong life at any cost is not necessarily a good thing, unless the patient has expressed these wishes. And if they haven't, this leaves everyone else trying to do the right thing. Which can balloon into the wrong thing.
Dr. Zitter believes that this conversation needs to begin in high school. She is a proponent of Sex Ed and Death Ed. That the conversation starts in adolescence, and a person's wishes can change over time. We both believe that the earlier these conversations occur, the more likely that a culture shift can occur and we can stop this "conveyor belt" for those that want to get off (or not get on in the first place). She offers resources to help you sort this out.
Extremisis a documentary, currently on Netflix, which follows 2 families through the process of decision making for their loved ones who are intubated in the ICU. It is a raw account of the families and professional caregivers struggles to make the right decisions for the patient. It's a very real picture of what goes on every day when conversations haven't been had, and documented, as well as an excellent visual about the necessity of advanced care planning.
Dr. Zitter's book, Extreme Measures: Finding a Better Path to the End of Life offers stories of patient/family ICU experiences, as well as valuable tools in the appendices for guidance to help you process this information and develop your own advanced care plan.
Other resources she mentions:
Vital Decisions, a company whose mission is to be the force, the catalyst in this country, to fundamentally change how individuals are cared for during an advanced illness.
Serious Illness Care , a joint health system innovation center working to save lives and reduce suffering, started by Atul Gawande
The goal is that everyone gets the opportunity to live the way they want to live, all the way to the end. Our job as health care providers should be to help family members navigate the process, based on their loved ones wishes. Because with the advances of technology, there will always be that one next thing. The issue is, would you want us to go there for you...
How do you become a part of a community when you don't even know that community exists? When your friends aren't going through this experience at the same time you are, it's easy to feel alone. Elizabeth Miller started on her caregiver journey doing what many do...Googling. She first came across the term sandwich generation, which fit her circumstances, and then family caregiver. She had no idea she was a family caregiver. She just thought she was being a daughter. Putting things together on her own, she was struggling to take time for herself. And knew that it was important. She needed to figure out how to take care of herself through the process of caring for her kids and her parents.
Elizabeth documented her personal journey (a background in journalism comes in handy). Starting with 100 days of healthy on Instagram, then blogging and podcasting, Elizabeth shares what worked for her and is now helping others. As a certified caregiver consultant, she wants to help you find ways to be a happy, healthy caregiver.
Find her at HappyHealthyCaregiver.com as well as links to her social media. And check out the 3rd National Caregiving Conference, happening 11/8/18-11/11/18 in Chicago. There is a virtual attendance option for those who can't get to Chicago. And look for Elizabeth's book, which will be launching at the conference: Just for you: A Daily Self Care Journal
Other resources Elizabeth mentioned:
The Dutiful Daughter's Guide to Caregiving by Judith Henry
daughterhood.org
AARP's livable communities program has one goal. To help communities work better and become great places to live for everyone. What makes a community "livable" varies by location, but some of the attributes on the list are access to transportation and public spaces, a range of housing options, and community engagement.
The livable communities program has TONS of resources on their webpage AARP.org/livable . From access to their weekly newsletter, which comes out on Wednesdays, to a document called Where We Live , which provides an annual report on the state of communities, to a map of what communities are involved...and so much more, check it out!
Funding for the changes necessary to make a community more livable can come from a variety of sources. Some can be as simple as thoughtful planning about existing public investments in infrastructure. Talking to your local planning committee to see what is on the docket for upgrades and asking your city government to be involved are great ways to start.
One of the biggest takeaways for me was the results of the 2018 Home and community preferences survey. Danielle tells us that ~7% of respondents have accessory dwelling units or "granny flats", but ~33% would like to build one. With the number of people over 65 increasing every day, I can only see this number increasing. In order to see these units become accessible to more homeowners it's going to take rezoning or perhaps policy change. For the one off, it can require a variance. Some may not want to see a change to their neighborhood or town. But there are pluses for both sides to having these units. Having your aging parent in the backyard vs. across the city (or country) will make your life easier. Having your parents close by can provide a source of care for your children. And finding a space that can accommodate both your and your parents, can allow you to live in a home or area that you might not otherwise be able to afford. All things to consider.
Find out about their national conference, happening November 12-14 2018 in Charlotte, NC. This conference has ~100 slots open to the public. You can learn more here: 6th Annual AARP Livable Communities Conference 2018
Find AARP's livable communities on social:
Facebook: AARP livable communities
Twitter: @AARPLivable
Modernizing and medicalizing death is something our culture has become very good at. And there are both positives and negatives associated with this. Michael Hebb's life experience with death, at an early age, set him on a path that most of us don't encounter until much later in life. What were devastating life experiences for a child, molded Michael into a deep thinker. Someone who is able to help us all face difficult transitions. And conversations.
It is never too early to talk about death. Michael's early life experiences were, in part, what prompted him to launch "Death Over Dinner", a program that utilizes the dinner table to have difficult conversations with our family and other loved ones about death. About how to honor our loved ones by following through with their wishes. This starts with conversations with them about what they would want if they were unable to verbalize them. He also believes that in having these conversations, it allows us to know ourselves better and deeply connect us with our "communities", our family and friends that we would have these conversations with.
But with ~75% of people expressing wishes to die at home, yet only ~25% of people do, there clearly is a disconnect. Death Over Dinner can help start these tough conversations. As a result of the many positive experiences of the Death Over Dinner movement, a book was born, which shares some of these great, inspirational stories. It's called Let's Talk About Death (Over Dinner)
Don't assume that your loved one doesn't want to have this conversation. Often they don't want to upset YOU and start these "difficult conversations". Just ask. And it often takes more than one conversation. But if you start the conversation, each time your broach it, it may become easier. And Death Over Dinneris a tool that can help you have these difficult conversations.
Click on the links above to access resources, and follow Michael and Death Over Dinner on social media :
Facebook: Death Over Dinner
Twitter: Death Over Dinner
Geriatric Care Managers or Aging Care Specialists, are an important member of an elder's care team. They are the conduit between the patient, family, and medical team. They assist is determining the best use of resources based on individual needs and because they go into the home, they can see the big picture. They advocate for the patient with discussion about what the patient's wishes are. They can be nurses, social workers, or elder care workers with a special certification. They can work for insurance companies, physicians, or can be independently employed.
Tara Cunningham RN, shares her perspective as an eight year veteran Geriatric Care Manager and as a nurse. She offers great advice for families which include open discussion about end of life wishes, and suggests several tools to help with the conversation: The 5 Wishes Document and The Conversation Project
She also offers suggestions for finding out if you or your family have access to a Geriatric Care Manager:
- check with your insurance company
- ask your primary care physician
- Check with your local council on aging
- Do an online search
Medicare's annual election period runs from October 15-December 7. It's mid-September now. This is an important PSA that can save your family thousands of dollars, hours of stress, and many sleepless nights. Danielle Kunkle knows her stuff. And she knows how to help you and/or your parents. Medicare is complex. It has many moving parts. You have to know:
- when to enroll
- what choices are "permanent"
- what can be changed annually
- why you would want to change your options
- when these changes can occur
We all get SO much junk mail. If you or your parents are enrolled in Medicare, make sure to look for the Annual Notice of Change , coming to you or their mailbox in Mid September. This is an annual opportunity to make sure you have the coverage you need. Premiums go up, coverage of specific drugs can be eliminated, and physicians may leave a plan, which can have a huge impact on out of pocket costs. So pay attention. And if you have questions, ask. Look at resources listed here:
Medicare's plan finder tool
boomerbenefits.com
Facebook: @boomerbenefits
instagram:boomer benefits
YouTube: Boomer Benefits
At 27, Christina Britton Conroy,found herself responsible for the care of her 80 year old father as his physical health declined and he suffered with dementia. Twelve years of care that she never wanted to provide, led her down a path to professional caregiving. Using her background in theater and music, she became a music therapist for seniors in a variety of settings. She continues to provide music therapy to many, in spite of her role as a caregiver for her husband who was diagnosed with Parkinson's dementia.
Through her years of experience as both a personal and professional caregiver, she has developed much insight. Her advice for caregivers:
- Expect the expected
- Take time for yourself
- You will always feel guilty. Accept it and do the best you can
- Allow them to say "no"
- Crying is necessary, and good
check out her book: How To Have Fun With Your Aging Parent
And find her on social media
Catherine Hodder, Esq. was a corporate finance attorney and a Mom to two young children when her father was hospitalized after a series of mini-strokes and spent several months in the hospital. Although her dad was very organized and had "his affairs in order", she still ran into problems she could not have anticipated, even with her legal expertise. She became a member of "The Sandwich Generation". As a result of her experience, she changed her legal focus to estate planning. Now retired from law practice, she writes many helpful articles and books, and has recently published
Estate Planning for the Sandwich Generation : How to help Your Parents and Protect Your Kids
In today's interview, Catherine tells us these 3 things will make your life easier when it comes time to help your parents:
- Early Communication--talking to your parents about their wishes, finding out where they keep their documents, and who is in charge of their finances.
- Prepare/plan as much as possible--find out if they have filled out documents, whether they have long term care insurance
- See a lawyer--banks and healthcare providers often need specific language in you power of attorney documents. Terms vary from state to state. Spending a little money up front to know that when you need these documents, they are the right ones can save you much aggravation that you will not have time to deal with.
She also suggests getting your own estate planning in order. When you are the one everyone else depends on, what happens if something happens to you?
In addition to her website, HodderInk.com
you can find Catherine on Facebook @sandgenlife and Twitter @sandgenlife
Cycling without Agewas founded in 2012 by Ole Kassow in Copenhagen. It now includes chapters in 35 countries, with approximately 150 chapters in the US.
It was born of Ole's desire to return mobility to seniors in nursing homes. To let them feel "the wind in their hair". It has also had some amazing unintended side effects!
For the passengers getting back out into the community has:
- brought joy and a sense of "normality" back
- improved mood
- promoted new relationships
For the volunteers (called pilots) this shared experience has:
- helped develop new purpose in their lives
- provided opportunity to learn history, from the people who lived it, in the place where it was lived
- provided priceless resources of wisdom (and friendship)
To find out more about the program, list to Ole's TED Talk
To find out how to start a chapter in your community or follow on social media, go to the website:
Cycling Without Age (US and Canada)
Cycling Without Age (International)
Instagram: #cyclingwithoutage
Facebook: Cycling Without Age
Caring Across Generationsis an organization, a movement, that believes that planning for long-term care is not just personal. It's political. According to their website, 70% of people over 65 are going to need some form of long term care for an average of three years. With 10,000 baby boomers turning 65 every day, thats A LOT of care. They are on a mission to bring the infrastructure of caregiving into the 21st century. And God knows it needs it!
Janet Kim, the communications director for the organization says that this is one of the biggest problems that will shape us as a culture. The group believes that sharing stories and connecting is critical to promoting policy change. And they are doing that.
The goals of Caring Across Generationsare:
- expanding choices for care and improving affordability
- providing more support for family caregivers
- making sure that care jobs are good jobs with wages that professional caregivers can live on
Janet suggests a couple of documentaries regarding care:
On The Basis of Sex
Care
She also suggests finding out what is going on in your state to address the issues surrounding this important topic. So listen to this episode. And get involved. Because it's going to affect you in one way or another. You should have an opinion about this. And have your voice heard.
Why is policy change necessary to improve the plight of the direct caregiver. Robert Espinoza, the Vice President of Policy at The Paraprofessional Healthcare Institute (PHI) talks with me today about the the reasons behind the present and ever growing shortage of direct caregivers. We discuss:
- low wages
- poor training standards
- no room for advancement
- inadequate supervisory roles
Why should you care about it? Your parents (or yourself) are likely going to require some kind of care at some point. If you can't afford private pay, you are not going to be able to find someone to care for your parent (or yourself). So who's going to do it? You or your kids...which potentially means leaving your job. And that opens up another whole can of worms..
Home care is one of the fastest growing occupations in America. With ~50% more workers needed by 2026, these are among the most needed jobs of the future. The problem is the median pay is $10.49/hr. It is going to take policy changes at the state and federal level to fix this. And it's going to take making our voices heard to affect this change.
Robert and his team at PHI are not just complaining about this. They are working to become part of the solution. They are doing research and consulting with long term care providers to develop large scale, multi-year initiatives to transform home care jobs. And they take part in the public education process. Check out their website for resources you can use to help start a conversation in your community and learn more about their #60caregiverissues. And follow them on Facebook and Twitter
To me, understanding long term care insurance is like understanding Medicare. There are a lot of moving parts and you need an expert to help you navigate the process. My conversation with Honey Leveen, the self proclaimed "Queen of LTCi" really helped me get it. One of my take aways was that it is necessary to have long term care insurance; as much as you can afford. Some is better than none. Because with none, you are at the mercy of the government (Medicaid) or a burden on your children. And if you are honest with yourself, you don't want either.
There are two different kinds of LTCi and many moving parts to a policy, which can be manipulated to help you get the best bang for your buck. You need to know that the earlier you plan, the cheaper this insurance can be for you. Children can also take out a policy for their parents.
A long term care policy is your (your parent's) passport to dignity, options, and access to care when it becomes necessary. It can provide for comprehensive care FOR ALL CARE IN ALL SETTINGS, which includes in home care, not just medical facility based care like assisted living or nursing homes. And there are very defined triggers for when someone can qualify for benefits. If you have an expert help you navigate the process, you can minimize the challenges associate with making the right decision.
The sooner you sign up for a policy, the lower the premiums are. The average age of a purchaser is mid to late 50's, but you need to consider that the longer you wait, the more likely you are to develop a medical condition that can affect your ability to qualify for coverage, or the rate at which you qualify.
Please talk to your parents and consider for yourself, what are the ramifications for my family if I don't have a LTCi policy? And do some research on what Medicaid will cover. If you can get a Medicaid bed in a facility, do you want to be there? We have a generation of people about to retire and most will eventually need some kind of care. Be prepared. Many will be your parents. Are they/you ready?
Check out Honey's website for resources to help you understand. And reach out to her with questions or to help you obtain a policy for your parents or yourself.