Why I Wrote A Book about Helping My Husband Die

Why I Wrote A Book about Helping My Husband Die

By Joanne Tubbs Kelly

When interviewers ask me what inspired me to write about my experience helping my husband die using Colorado’s End-of-Life Options Act, I have an easy answer: I have always depended on books to give me insight into whatever new situation I face. So, when my husband, Alan, was diagnosed with a rare, fatal, neurodegenerative illness and wanted to use medical aid in dying to shorten his suffering, I searched for a memoir that would describe how other couples had navigated this emotional minefield. 

It was easy to find memoirs about caregiving and the death of a spouse. I found books, although not necessarily memoirs, about making good choices at the end of life, choices designed to keep patients off the high-tech medical conveyor belt, which delivers interventions that postpone death and prolong suffering. I even found a memoir by the mother of a young woman who had used Oregon’s medical-aid-in-dying law to end her life when an aggressive brain tumor deprived her of any semblance of quality of life.

I read all these books, but none of them was what I desperately craved: A book about a loving couple working together to navigate the intentional death of one of them. So I started taking notes on my experience with Alan, joined a memoir-writers group, and ultimately wrote the book I had wanted to read. 

That’s what I tell interviewers, but it’s really only part of the reason I wrote my memoir. The other part is this: I felt deeply conflicted about helping Alan die, and I knew the writing process would help me sort out my feelings. On one hand, I definitely did not want my husband to die. We met, fell in love, and married in midlife, after two stressful marriages and two divorces each. It was by far the happiest, healthiest marriage either of us could imagine, and we each secretly thought we had won the jackpot. He kiddingly called me his “trophy wife,” and I referred to him as my “arm candy.” I didn’t want to live without him.

When Alan was diagnosed with multiple system atrophy, I had promised to be there for him, to support him, until the end. So when he asked for my help applying for medical aid in dying, I agreed to assist him. But deep down, I hoped his application would be denied. 

To be approved for medical aid in dying in the eleven US jurisdictions (ten states and the District of Columbia) that allow it, a person must have a terminal diagnosis and a prognosis of six months or less, must be able to demonstrate the ability to make good decisions on his or her own behalf, and must be able to ingest the life-ending cocktail without assistance. Alan knew that if he waited too long, he would likely lose the cognitive function required for good decision making and the physical ability to hold the glass of medication to his lips and drink it.

Therein sat the tension of our situation. Alan didn’t want to miss his window of opportunity, but I wanted to keep him around for as long as possible. It took me a while to internalize the fact that he was going to die soon anyway, that I was going to have to say goodbye sooner than I wanted. That helping him truncate his suffering was the kindest, most loving thing I could do for him. And it wasn’t until I finished the memoir, almost two years after Alan’s death, that I finally came to peace with that fact.

I hope my memoir accomplishes two things: I want people, even young adults, to read it and start talking about their end-of-life choices and sharing with their loved ones the kind of death they envision for themselves. We never know when an illness or catastrophe will strike that will leave us unable to make choices for ourselves or unable to communicate our choices. As we age and accumulate wisdom, our end-of-life wishes will likely evolve. So we need to keep having these conversations throughout our lives. The Conversation Project and Compassion and Choices offer guides that can help you get started.

But mostly, I want my memoir to be helpful to other couples who find themselves in situations similar to Alan’s and mine. Couples who are grappling with the hardest decisions. Couples who are forced to decide what love really looks like at the end of life.

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BIO: As a kid, Joanne Tubbs Kelly moved around a lot, but she always felt at home when she had her nose stuck in a book. As an adult, she provided marketing communications services to high-tech companies. Now that she’s retired, she lives in Boulder in the home she and her husband, now deceased, remodeled from top to bottom. She delights in puttering in her garden and walking and hiking where she can wallow in the beauty of Boulder’s Flatirons and Colorado’s high peaks. Whenever she’s not in her garden or out walking, you can usually find her up to her old tricks: hiding out somewhere with her nose stuck in a book.

Find out more about Joanne on her website https://joannetubbskelly.com/

Walking Him Home: Helping My Husband Die with Dignity

feaAlan and Joanne marry in midlife and live a happily-ever-after existence until, at sixty-nine, Alan is diagnosed with a rare, fatal, neurodegenerative illness. As he becomes increasingly disabled and dependent on others, and decreasingly able to find joy in life, he decides he wants to end his suffering using Colorado’s Medical Aid in Dying law.

Joanne desperately wants Alan to live, but when he asks for her help completing the Medical Aid in Dying application, she can’t say no. She helps him complete the requirements, hoping deep down that his application will be denied . . . only to be stunned when his medical team approves his request and writes him a prescription for the life-ending drugs.

Told with affection and spiced with humor, Walking Him Home is Joanne’s tale of coming to terms with her kind, funny husband’s illness; of learning to navigate the intricate passageways of caregiving and the pitfalls of our medical system; and of choosing to help Alan in his quest to die with dignity, even though she wants nothing more than to grow old with him. Tender and heartfelt, this is one woman’s story about loving extravagantly—and being loved in kind.

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Category: On Writing