by Joanne Tubbs Kelly
She Writes Press (2022)
Walking Him Home is an account of what it’s like to have a neurodegenerative disease and reach the point of wanting to die. Most approved prescriptions for medical aid in dying are written for persons with cancer, whose six months prognosis is easier to determine.
Joanne Tubbs Kelly describes the dying of her husband, Alan Kelly, from multiple systemic atrophy (MSA), a rare condition of the nervous system that damages the nerve cells in the brain and leads to a loss of balance, gastrointestinal issues, and incontinence.
At the end, one cannot get out of bed without a mechanical lift. Everything that has physically defined one’s life is gone. We watch this progression on every page, loving that Joanne and Alan care for each other and hating that there is so much suffering.
Joanne and Alan found each other late in life, after previous marriages, and hoped that theirs would never end. The first chapters of the book recount their life together. Joanne was a successful corporate executive. Alan was a salesman who decided after they married that he’d rather be a handyman. He was outgoing, talented, and self-motivated, and had many clients. He did not mind that Joanne was smarter. “I like smart women,” he said.
When Alan could no longer endure the loss of the ability to do the things he loved, he asked Joanne to help him die. They were Colorado residents. Colorado authorized medical aid in dying in 2016 and he needed Joanne to arrange the appointments that would be needed to have his request approved. His doctor had admitted him to hospice which satisfied the requirement that his life expectancy was less than six months. Joanne was deeply conflicted. Alan was only 69 and she wanted many more years with him. She didn’t, however, flinch. She knew that it was what he wanted. This dilemma is central to what every couple must face when one of them wants to use medical aid in dying: how does a family member summon the strength to help a loved one leave, when that person’s leaving is the last thing one wants?
The book tells us how. Joanne took care of herself. Throughout the duration of Alan’s illness, she saw a therapist. She made time for herself once a week to be alone. She kept a journal, and when she saw that a book might be emerging, she joined a writing group. The result is an engrossing memoir of two people deeply in love, and could be read for that reason alone. Joanne describes the challenges of dealing with a debilitating illness, the clinical trials they sought, and the doctors who disagreed with each other. She describes misunderstandings that can happen in an assisted living facility. Choosing the date on which he would die, as Alan did, made the ending definite. It is very different from sitting beside a hospital bed with intravenous tubes and ventilators, providing the hope that life will go on, and maybe even get better.
Alan’s final day was the way he wished it to be. Joanne, their children, a few close friends, and their minister were present, with a Willy Nelson song playing in the background. They redeclared their love for each other. Everyone had a chance to say goodbye, as had many others in the preceding several weeks.
Since Alan’s death in 2020, Joanne has become an advocate for medical aid in dying. She has an online blog to which anyone may subscribe: joannetubbskelly.com/blog, in which she discusses diverse issues such as how death doulas can be helpful, how Canada enacted its law, what dying in the Netherlands is like, and issues that arise for disabled people. It is published once a month.
Those who have read Amy Bloom’s memoir, In Love, will notice some similarities. Bloom’s husband and Alan were both vital men who loved their intelligent wives. They both sought their wives’ help in ending their lives. They both had younger brothers named Paul who died early. They both died in January 2020 and had their memorial services on February 8, 2020. They are both now the subjects of important books. Joanne Kelly hopes that the appearance of the two memoirs so close together will be helpful to others as they navigate whether or not to choose medical aid in dying.
Review by Susan Gillotti, PCV Board member
by Atul Gawande
Medicine has triumphed in modern times, transforming birth, injury, and infectious disease from harrowing to manageable. But in the inevitable condition of aging and death, the goals of medicine seem too frequently to run counter to the interest of the human spirit. Nursing homes, preoccupied with safety, pin patients into railed beds and wheelchairs. Hospitals isolate the dying, checking for vital signs long after the goals of cure have become moot. Doctors, committed to extending life, continue to carry out devastating procedures that in the end extend suffering.
Gawande, a practicing surgeon, addresses his profession's ultimate limitation, arguing that quality of life is the desired goal for patients and families. Gawande offers examples of freer, more socially fulfilling models for assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person's last weeks or months may be rich and dignified.
Full of eye-opening research and riveting storytelling, Being Mortal asserts that medicine can comfort and enhance our experience even to the end, providing not only a good life but also a good end.
To Die Well: Your Right to Comfort, Calm, and Choice in the Last Days of Life
by Sidney Wanzer, M.D. and Joseph Glenmullen, M.D.
The information in To Die Well is both comforting and empowering. Knowing our rights to refuse treatment, as well as legal ways to bring about death if pain or distress cannot be alleviated, will spare us the frightening helplessness that can rob our last days of meaning and connection with others.
Drs. Sidney Wanzer and Joseph Glenmullen do not shy away from controversy. They make clear what patients should expect of their doctors, including the right to sufficient pain medication even if it shortens life. They distinguish between normal sadness and depression. They also explain the ways to hasten death that are legal and possible for anyone, and those that require a doctor's help.
A Good Death: Making the Most of Our Final Choices
by Sandra Martin
A Good Death is timely, engaging and inspiring. In taking on our ultimate human right, award-winning journalist Sandra Martin charts the history of the right to die movement here and abroad through the personal stories of brave campaigners like Sue Rodriguez, Brittany Maynard and Gloria Taylor. Martin weighs the evidence from permissive jurisdictions such as the Netherlands, Oregon, California, Switzerland and Quebec and portrays her own intellectual and emotional journey through the tangled legal, medical, religious and political documentation concerning terminal sedation, slippery slopes, and the sanctity of life.
Modern death has become a wrenching political dilemma, one that becomes more pressing as the population ages. A Good Death confronts our fears about dying, our struggle for meaning, and our dread of being trapped by voracious medical technology in a nightmare world that has abandoned caring in pursuit of curing, no matter the cost or the suffering to patients and their families.
A Good Death asks the tough question none of us can avoid: How do we want to die? The answer will change your life-and your death.
"Living Life Dying Death; A Guide to Healthy Conversations about Death and Dying"
by Jenifer Collins Taylor
While some see death and dying as taboo subjects, author Jennifer Collins Taylor, MSW approaches the topics with gentle, thought-provoking prose, demonstrating that openly discussing death and dying is as important to the living as it is to those who may be nearing their final breaths. Her book, Living Life Dying Death: A Guide to Healthy Conversations About Death and Dying to Inspire Life and Living, accomplishes its mission through reflective conversation starters that encompass topics such as compassion, dreams, fear, goodbye, gratitude, grief, honesty, hope, humor, joy, mystery, pain, patience, peacefulness, philosophy of life, relationships, spirituality and many more.
Most importantly, the book emphasizes that love is triumphant. In times of health readers are encouraged to reflect on, explore and express their beliefs on the very nature of life and living, death and dying. In times of health challenges the book can be used as a guide to initiate difficult conversations when faced with the possible decline and death of self, friend or loved one. In times of grief this book can be used to bring support and hope to the dynamic experience of grieving. Regardless of where readers are on the pathway from life to death, Living Life Dying Death should be readily available to guide, encourage and inspire healthy conversations about death, dying, grief and loss.
Living Life Dying Death calls readers to action, prompting them to find the courage and confidence to more openly discuss death, dying, grief and loss. This book stimulates the reader to embrace living well and encourages those approaching life's final journey to trade fear for love, comfort, forgiveness and a sense of awe. Courageous conversations about life and death allow the strength and beauty of the human spirit to shine.
Take Care of Dying---Get On with Living: End-of-life Planning that Works
by Theo Wells
The greatest gift you can give your family and friends is your carefully thought out plan for handling the unexpected events at the end of your life.
Here—all in one place—are the basic decisions you need to make as long as you’re living: