A Choice to Love and to Let Go
How far would you go for someone you love?
Before we begin…
What’s the hardest thing you’ve ever had to do for someone you love? If he/she/they wanted to die after receiving a terrible diagnosis and they needed your help to do it, how do you think you would respond? Perhaps you can guess that I’ve just finished Amy Bloom’s In Love: A Memoir of Loss and Love. It’s a beautiful little book that never asks these questions, yet I thought about them every time I turned the page.
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Two big frogs, then a beautiful but difficult book
You know that saying, “swallow the big frog first?” Well, I swallowed two on Monday and have been paying for it all week.
Because my dentist and a CVS share a parking lot, I decided to get my Covid booster a half-hour before some unexpectedly painful dental surgery involving my gums, stitches, drills and suppressed sobs on my part. The booster kicked me in the butt and the recovery from the gum surgery has not been as swift as I’d hoped. Since then, I’ve been caught in a tiny tornado of pain, fatigue, and brain fog that has not quite played itself out as I write to you today. Also: I’m hungry. It’s hard to get up much energy on a diet of soft food and liquids.
As I have always done, I reached for books this week to get me through. My choices this week were both page turners and thought provokers. I hadn’t planned to read either one but am glad I did. The first one was Anne Elliot Dark’s novel, Fellowship Point. The second one is Amy Bloom’s memoir, In Love: A Memoir of Love and Loss. I look forward to sharing my take on Dark’s novel in a future issue but today, I want to talk about In Love.
In a nutshell, In Love is an unsentimental, clear-eyed, deeply loving, and unexpectedly useful account of what happened when Bloom’s 66-year-old husband, Brian Ameche, decided to end his life after he was diagnosed with early-stage Alzheimer’s. He asked Bloom to handle the details. She did. Then she wrote a beautiful book about it because if Bloom knows how to do anything, she knows how to write a beautiful book. Like her stories and novels, this memoir is composed of small, tightly-written chapters packed with insight, piercing observation, and, often, humor.
We come to understand how this marriage came about and how they’d chosen each other despite the pain it would cost them and others. We feel the commitment, the intuitively-shared understanding of two people who know each other very well, like each other a lot, and have learned enough about life to cherish what they have. We see how ordinary they are in their daily routines, how flawed each can be, but also glimpse the tremendous bond that holds them together.
Bloom weaves helpful facts into the narrative, helpful at least to this reader. I didn’t know, for example, that women in their sixties are twice as likely to develop Alzheimer’s as they are to develop breast cancer. I learned that it is best not to use one’s own phone or computer to search out sources for devices or drugs designed to help one commit suicide or the dosing necessary to kill a handsome, six-foot-two ex-football player. I found myself looking at the image of the mini mental status exam and anxiously wondering if I would be able to count backwards by 7 if asked. I’ve never been very good at spot-quizzes, especially ones involving numbers. We also learn about where Bloom and Ameche’s story ends, at Dignitas, one of the two organizations in Switzerland that provide assisted suicide services and support.
Throughout the book, I ached with recognition as Bloom wrote about the initial confusion she felt in the two years before the diagnosis when her husband seemed to disappear and a stranger took his place. I recognized too the hope behind the constant scrolling and googling, seeking answers about the types of dementia, the progression, how soon the life she and her husband had together would fall away entirely. The diagnosis settled the issue but also sealed their fate. Her husband, still in the early stages of the disease, made it clear he wanted to “die standing up instead of living on his knees.”
I remember the conversations I had with loved ones as my dad’s dementia worsened and hard decisions had to be made. Some of us said, “not me, I am not going to go through this or put others through it.” My husband and I tightened up our advance directives but dying in America, even in those states with right-to-die laws, really only applies to a very limited group of people who meet certain criteria. Dementia is not among them. If you have dementia, then you must act alone and not wait too long because if you do, the decision will be taken from you by the damage in your own brain. I think about this often.
When he was younger, my dad stated that his preferred way to go was to be “hit by a bus” - sudden, clean, painless. He made a point to mention that he never wanted to be put into “one of those places” or to linger past his due date. Yet, by the time he was diagnosed with Alzheimer’s, he said nothing of the kind. He wanted to defeat his diagnosis, to persist. He never lost his obsession with being necessary in the family business or with parenting or being in control. He continued to play the guitar and to sing and to enjoy music even though these sips of regular life grew more brief and came at longer intervals. After a little more than a year in the memory care unit of his assisted living facility – one of the nicest ones I’ve ever come across with some of the best, most compassionate people – he died of Covid. The virus was the fast-moving “bus” that spared him years of decline he would not have wanted if he’d been aware of it. And it spared us. I need to say that because it is true but it is a truth that hurts.
The fact is, dementia is a kind of death before death. There is no way to overstate the toll it takes on those closest to the person. I am thinking now of my dad’s heroic, steadfast, loving wife. She’d been carrying the burden a long time before she finally asked for help and she carried it with grace and compassion. In her care, my dad never lost his dignity. But the person he’d been was no longer there.
In Love is an account of a journey that only two people who loved and trusted each other could make. Not everyone can or wants to make the same choice but everyone who reads this book will come away with a deeper understanding of love, loss, loyalty, courage, and compassion.
The implied questions are difficult to ignore or to answer:
Could I help a loved one end his/her/their life? Would I ask someone to help me end mine? How bad would the prognosis have to be for me to reach that decision?
Reading In Love made me realize that I know some of the answers to these questions for myself but I am still grappling with others. For now, I have time. I think.
Attention Louise Penny Fans and Newbies
I’ve never read Louis Penny’s Inspector Gamache novels although I’ve got friends who love her and them. When a group of fellow “bookstackers” announced a plan to spend three months looking at these novels, I thought it would be a wonderful way to jump in. If you are already a fan, you’ll love the chance to talk about your love for Gamache. If, like me, you are new to the series, join me in trying to figure it all out. You’ll be guided by founders Elizabeth Held and Aya Martin Seaver and will be treated to essays on everything from the food in Louise Penny’s books to the science of murder. Check it all out here:
What you can do to support me as a writer (thank you for asking)
Since this newsletter launched over two years ago, many of you have asked me how you can support my work here at Spark financially. Every time, I am filled with renewed energy because you recognize that my writing is work and my work is valuable to you. That said, Spark will remain free.
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We have a winner
The winner of the drawing announced in last week’s newsletter for a banned book of her choice is Connie Caiwen, author of the newly launched newsletter, Fluff in the Afternoon. Thank you so much, all of you, for contributing your thoughts about this important subject. If you missed last week’s post and want to check out the books folks are trying to restrict, here you go:
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Gratefully,
Betsy
P.S. And now…your moment of Zen: The Gift of Rain
Subscriber Jolie K. from San Diego went camping at June Lake in the Eastern Sierras and came upon this moment of Zen.
Calling for Your Contribution to “Moment of Zen”
What is YOUR moment of Zen? Send me your photos, a video, a drawing, a song, a poem, or anything with a visual that moved you, thrilled you, calmed you. Or just cracked you up. This feature is wide open for your own personal interpretation.
Come on, go through your photos, your memories or just keep your eyes and ears to the ground and then share. Send your photos/links, etc. to me by replying to this email or simply by sending to: elizabethmarro@substack.com. The main guidelines are probably already obvious: don’t hurt anyone -- don’t send anything that violates the privacy of someone you love or even someone you hate, don’t send anything divisive, or aimed at disparaging others. Our Zen moments are to help us connect, to bond, to learn, to wonder, to share -- to escape the world for a little bit and return refreshed.
this is a terrible beauty of a story. I pray I am spared from that decision, and I pray I am not the subject of said decision. Life is hard at our advanced age. We have seen it, done it, and now wait for it to do us.
Thanks for sharing
Thank you for this beautifully written, thoughtful, heartbreaking and completely accurate post about ‘the death before death’ of dementia. So sorry for the loss of your Dad, Elizabeth. My mom died last year and would talk to me as if I was her friend, had no idea I was her daughter. One day I was showing her a photo I took in Ireland and she said it was beautiful and asked me if I was ‘in the Arts.’ I said “Well, I did go to cooking school.” Her response was “My daughter went to cooking school, too!” I excused myself and went into the bathroom and sobbed into a towel till I could compose myself. My answer to your question is yes.