EOLPodcast

Ep. 508 Navigating Life as a Dementia Caregiver with Beverly Thorn PhD

Learn about a helpful book with resources for dementia caregivers.

My guest Dr. Beverly Thorn is dual trained in the neurosciences and clinical psychology. She is the author of hundreds of articles, two books, and four workbooks on coping with chronic illness. She has also been trained as an end-of-life doula and served as her husband’s caregiver through his dementia illness and at the end of his life. She is the author of the newly published book Before I Lose My Own Mind: Navigating Life as a Dementia Caregiver. Learn more at her website:

drbeverlythorn.com

Listen here:

This episode includes:

  • How her husband recognized that something was wrong long before his diagnosis
  • Patients and loved ones need to be empowered to change physicians if they don’t like the care they are receiving
  • The important contributions of end-of-life doulas and advocates
  • The stages of dementia Beverly observed in caring for Walt
  • Why others may not recognize significant changes that the caregiver can see
  • The constant loss and grief of dementia caregiving
  • Why an advance directive tailored for dementia is essential
  • There is a window of time where life values conversations need to be held with patients and loved ones
  • The experience of caregiver grief and guilt

Links mentioned in this episode:

If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, and to everyone who bought me a coffee or donated on Paypal! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLU Blog

How Being a Caregiver Helped Me With Grief

By Karen Wyatt MD

As a hospice doctor I have often worked with families caring for a dying loved one at home. But I have only once had the opportunity to switch places and be the caregiver myself when my mother died. That was a profound and educational experience for me as I suddenly understood personally what it was like to be with a dying loved one around-the-clock. 

While before I had imagined what it felt like to sit up all night at the bedside holding vigil before the moment of death, I can now vividly recall the exhaustion and the uncertainty of that experience. Now I know far more than ever before what the act of being a caregiver takes and what it gives back.

I was able to let go of little moments with her one-by-one.”

The greatest blessing of being a caregiver for me was the opportunity to experience grief even before my mother had died. I was able to let go of little moments with her one-by-one: the last time she ate a spoonful of the custard she loved so much, the last morning she brushed her own hair, the last afternoon she shuffled through the kitchen with her walker, the last evening she sat on her recliner and listened to the news, the last night she touched my face and kissed me goodnight.

With the arrival of each new day, something else had been lost and the little world we were sharing became a bit smaller until we were left with only the bed she rested upon and the chair where I sat next to her. But I was able to let all of it go gradually while she was letting go of life and the pain I felt was somehow bearable.

There are other ways that the act of being a caregiver helped me:

  • Providing hands-on care and keeping my mother comfortable in her last hours gave me comfort as well. I was not just passively observing her dying process but I was helping her and it was a tremendous relief to be able to do something for her at that time.
  • I knew I was honoring her wishes by keeping her at home because she had talked with me about what she wanted at the end of life. Everything I did and every moment I spent with her felt “right” to me because I understood her preferences.
  • I was there for special moments when Mom spoke a few words or opened her eyes and smiled. Those tiny little experiences mean everything to me now as I remember our journey together to her last breaths. I am forever grateful that I didn’t miss a single moment.
  • I could give her one last gift of gratitude by enabling her to stay in her own home and have the kind of death she wanted. While there is no way to ever repay a mother for all of her years of nurturing and tender care, being there when Mom needed me was one small gesture I could make to show her my deep love.
  • We forgave one another.  Our relationship had not always been easy and there were some painful memories between us that we could never discuss. But in the middle of the night when Mom nearly fell out of bed and I was frantically trying to lift her back to safety, we connected in a moment of pure human frustration and love. Without saying a word we looked at one another and both understood somehow—life is difficult and we hurt one another along the way but nothing really shakes the deep love that resonates between our hearts. We both let go of all our resentment in that brief moment.

These opportunities were only possible because we had enlisted the aid of a home hospice team, who made regular visits and assisted me with the care that was needed. I could not have done the work without their help and I understand more than ever the important role played by hospice staffs all over the world.

I am a new person since caring for my Mom at the end of her life. I am a better doctor, a more compassionate wife, a more fun-loving mother, and a much wiser woman as I face my own aging. Life and death and grief … they are all what we make of them and how we take care of ourselves and others during the journey. I know this for sure now and the rest of my life will be blessed by that knowledge.

EOLPodcast

Ep. 445 Grief and Bereavement on the Hospice Journey with Barbara Karnes RN

Learn about grief from the perspective of two hospice providers on their personal experiences of loss.

This week I’m happy to be speaking once again to my recurring guest Barbara Karnes RN, hospice nurse, author, thought leader and expert on end-of-life care and the dynamics of dying. Barbara is the author of “the little blue book” used by hospices around the world to teach families what to expect as their loved one dies. She is also the author of My Friend, I Care, a book about grief that she designed to be used as a sympathy card. She discusses the bereavement support that is a required benefit of hospice care and we delve deeply into our own grief experiences and what we learned from them. Learn more about Barbara’s work at her website:

bkbooks.com

Listen here:

This episode includes:

  • What hospices are required to provide for bereavement care
  • Why grievers may not attend bereavement groups offered by hospices
  • How hospice volunteers can be helpful with bereavement
  • Why some grievers may prefer more solitude and less interaction with others in the early days after a death
  • Learning how to live without a loved one who has died is the ongoing work of grief
  • The grief we learned about in textbooks is not the same as the real experience of deep grief
  • Why support groups may be more helpful later in the grief process
  • Anticipatory grief that occurs from the moment of diagnosis
  • Journaling as a tool for grieving
  • How our grief experiences can be sacred to us

Links mentioned in this episode:

If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my newest donors Jenny and Kristine. Also thank you to Jean for buying me a coffee and everyone who has joined the $10 for 10 Years Campaign! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLPodcast

Ep. 364 What to Do When I’m Gone: Mothers and Daughters on Loss and Grief with Hallie Bateman, Suzy Hopkins, and Gia Snyder

Learn about a charming book of wisdom shared by a mother to her daughter and how it touches on the universal experience of loss and grief.

In this episode I’m welcoming my daughter Gia Snyder as my co-host. Gia is a spiritual teacher and musician, who is currently in nursing school to become an RN. Our special guests are also a mother and daughter pair: Suzy Hopkins and Hallie Bateman. Suzy is a retired journalist who worked for four Northern California newspapers and founded a community magazine in the Sierra Foothills. Hallie is a writer and illustrator based in Los Angeles whose work has appeared in The New Yorker, The New York Times, Buzzfeed and many others. Together Suzy and Hallie created the book: What to Do When I’m Gone: A Mother’s Wisdom to Her Daughter. The four of us will discuss the book, our mother-daughter relationships, and how we are all dealing with loss and grief as we navigate life and its changes.

Learn more about Gia’s work at: www.divinelygia.com

Learn more about Hallie’s work at: www.halliebateman.com

Listen here:

This episode includes:

  • Why Suzy and Hallie decided to write this book
  • The anxiety mothers feel over the prospect of leaving children behind when they die
  • Anticipatory grief experienced by daughters as their mothers age
  • The complicated nature of the mother-daughter relationship
  • The importance of wisdom passed on by mothers to their daughters
  • How we grieve the loss of our mothers differently than others
  • Afterlife communication with our mothers
  • How sharing food together helps us heal
  • Why recipes are a valuable part of the legacy we leave for family members

Links mentioned in this episode:

Buy me a coffee

Donate on Paypal

If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu and to those who have bought me a coffee and made a donation through Paypal! Your contributions make all the difference.

EOLPodcast

Ep. 353 The Rebellious Widow: Love and Life After Loss with Jill Johnson-Young

Learn practical tips for navigating the caregiving journey and grief after the death of a spouse.

My guest Jill Johnson-Young is a Licensed Clinical Social Worker who has worked in hospice and as a therapist specializing in grief, loss, dementia, and trauma. She shares her personal journey as a caregiver for two spouses and as a “double widow” along with helpful tips for grief and how to break the “widow rules.” She is the author of numerous books about grief for adults and children including her most recent The Rebellious Widow: A Practical Guide to Love and Life After Loss. Learn more at her websites:

www.therebelliouswidow.com

www.jilljohnsonyoung.com

Listen here:

This episode includes:

  • The “widow rules” and why they need to be challenged
  • How society judges grievers rather than allowing them to take their own unique path
  • How anticipatory grief helped with her process of grief after death
  • The importance of fostering intimacy for couples who are facing death (making “body memories”)
  • How medical and hospice providers often overlook the needs of the caregiver
  • What to say to couples dealing with a terminal illness
  • Why couples should discuss the caregiver’s future after death
  • Setting boundaries and asking for help as a caregiver
  • How she found “helpers” to connect with her children and watch over them during the dying process and funeral
  • The jarring moment when a diagnosis is received for both patient and caregiver
  • Challenges facing same-sex couples as they access care
  • Humor as self-preservation for medical staff and caregivers

Links mentioned in this episode:

Buy me a coffee

Donate on Paypal

If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my newest patrons Janis Wiebking and Robin Blanche! Also thank you to Francis Pope Hewitt for your Paypal donation! Your contributions make all the difference.

EOLPodcast

Ep. 337 The Hospice Doctor’s Widow: A Caregiver’s Journal with Jennifer O’Brien

Learn about a beautiful, artistic journal that explores the caregiver’s journey through dying and grief.

My guest this week is Jennifer O’Brien, author of the creative, gorgeous journal: The Hospice Doctor’s Widow. She discusses her journey as she cared for her husband who was a hospice and palliative care physician diagnosed with stage 4 cancer. We talk about grief and loss and caregiving in this intimate conversation. Learn more at her website:

www.hospicedrswidow.com

Get the book here

Listen here:

This episode includes:

  • Why this book is ideal for caregivers and people dealing with grief
  • How Jennifer created the art for the book
  • How Jennifer incorporated her husband’s wisdom into the book
  • What is “Precious Time” and how did that inform the way she and Bob spent his last days of life together
  • Navigating anticipatory grief for caregivers
  • Why the patient and the caregiver are going through two different processes
  • Why the survivors’ journey can be more difficult than the patient’s journey
  • What is the Triad of Certainty
  • Advice for caregivers
  • The At Peace Toolkit – A Guide to Being at Peace with End of Life

‘Precious Time’ is when you say what you need to say and don’t say what you will later regret.”

from The Hospice Doctor’s Widow by Jennifer O’Brien
  • A Year of Reading Dangerously – Register here
  • Get the At Peace Toolkit from Jennifer here

If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my new patrons G. Thackrey and Mary Susan Graham! Your contributions make all the difference.