Answering Alzheimer’s: Amy Bloom’s “In Love: A Memoir of Love and Loss”

Amy Bloom gets right down to it in her 2022 memoir, “In Love: A Memoir of Love and Loss.” The city of Zurich and the fact of her husband Brian’s Alzheimer’s disease comes up in the first paragraph as the couple boards a plane headed to that Swiss city. Their purpose for the trip is revealed in the fourth paragraph, which begins with these two stout declarative sentences:

“Dignitas’s office is in Zurich, and that’s where we’re headed. Dignitas is a Swiss nonprofit organization offering accompanied suicide.”

Through the subsequent 200+ pages, the multi-talented, much-honored Bloom (novels, short stories, non-fiction, journalism, children’s books, screenplays, television scripts, college professorships, longtime clinical social worker) takes us along with her on that journey whose end she telegraphs to us in the book’s opening lines.

She does so by skillfully moving back and forth in time in short chapters that are helpfully dated (no postmodern lost-in-time experiment here), weaving a portrait of a loving, high-energy, fruitful second marriage for both parties that we know from the beginning will have a sad and wrenching end.

None of that foreknowledge, however, keeps a knot from forming in my stomach, a surprising anxiety rising with each line, as Bloom and her husband finally get to that Dignitas office in the book’s latter pages.

What am I hoping for—an intervention by armed deprogrammers who whisk the couple off to a “safe house” where they would realize the error of their ways?

Taking stock of my own physical reaction, I marvel at what Bloom has accomplished. Not just as a profound reflection on human dignity and sovereignty (more on that below), but also as a work of literary architecture, creating a kind of zipline on which readers seamlessly traverse the byways of love, tragedy, gratitude, grief, family, and the excruciating questions life too often puts in front of us, demanding a near-term answer.

That search takes us into the charged atmosphere and highly constrained options available to those who wish to act on rational, long-and-deeply-held desires not to subject themselves and their loved ones to the dismal downward spiral of dementia.

No great mysteries are revealed in these last moments of the lead character’s life. No shocking plot developments or regrets or last soul-bearings or long farewell passages of rhapsody and homage. Just a loving married couple in a somewhat bland setting facing a grim but ultimately life-loving task, him taking control of that life while he still could, keeping it as his own, refusing to let it turn into something and someone else unrecognizable to that historic self and to all those who love him.

The two-step process calls for an anti-emetic to keep possible nausea at bay from the forthcoming deadly swallows of the sedative sodium pentobarbitol that will complete the task.

But before that second step, in his words, he desires some time “to just bullshit around for a while,” hearkening back mostly to his college football days at Yale, yarns she had heard a hundred times before, which she abides again, here and now, because this is his life and his death and she loves him.

He winds up talking so long the Dignitas staff “ladies” come out from the adjoining room to tell him the anti-emetic has surely worn off and if he wishes to “continue” (he does) he needs to take another (“Take your time…”), which he does. But soon he falls silent and Bloom longs suddenly for the football stories to start up again but they don’t, so she takes his hands and the “I love you/I love you too” murmurings begin, and then he drinks the liquid and 20 minutes later he is gone and she is headed back to the airport, an old friend awaiting her for the flight home.

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Brian Ameche had been experiencing signs of dementia (memory lapses, confusion, balance and executive function issues) in the year before being diagnosed with Alzheimer’s in the summer of 2019 at age 65. Bloom presents no tortured conversations about what they might do from there.

Her Brian, a man of large frame and appetites from the quintessential “large Italian family,” knows exactly what he wants to do. A football and lacrosse player in his youth, he enjoyed a successful architectural career, along with fishing, food, family and various charity endeavors that included volunteering to chaperone/bodyguard women requiring abortion services in difficult circumstances.

Clarity of purpose rarely being a problem for him, the challenge is only to figure out the means to end his life.

So he asks his beloved of 15 years whether she might do him one last and huge favor: research and arrange for the best option to pursue, before the awful loss of his Self and all its memories and identity and self-awareness reaches a point where he would no longer be competent to affirm his decision.

It’s a big ask, but he asks it so he might be free to live fully into the short window of life he will have left if his wife’s research proves “successful.”

That search takes us into the charged atmosphere and highly constrained options available to those who wish to act on rational, long-and-deeply-held desires not to subject themselves and their loved ones to the dismal downward spiral of dementia.

Bloom heeds yet one more request she inscribes on its own page immediately following the “For Brian” dedication page of her book: “‘Please write about this,’ my husband said.”

So she does, and it serves, among other things, as a deeply soulful case study of the legal, medical, moral, emotional and cultural quagmires attending the voluntary ending of life.

For all our talk of life, liberty and the pursuit of happiness being inalienable human rights, the roadblocks to being fully in control of our own humanity and its wanton diminishment by dementia are formidable in the United States, only slightly less so in some other parts of the world. Bloom confronts those roadblocks with a sometimes jaundiced eye, but also, resoundingly, with a dark and persistent humor of the kind that elicits bursts of laughter from me amidst her poignant, heart-rending account of deep and selfless love.

In the U.S., legal options for ending one’s life typically boil down to either ceasing all food intake (hurried along if desired by ceasing liquid, too), or by having or establishing a residence in one of the 10 states (and the District of Columbia) where “medical aid in dying is authorized.”

The first option involves a herculean summoning of will and great suffering, while the second is subject to multiple restrictions that make it challenging at best for people to navigate with the kind of fine-tooth comb that will finally allow them their desired end.

Hence: Switzerland, and what we might call a worldwide center for accompanied suicide. The country is not alone in offering some variation of such a service, but it is now well-established and noted for placing the relatively fewest (but still significant) requirements upon the applicant.

Safeguards are critical to prevent, say, heinous fraud and pressure by family members in search of a quickie inheritance, or a clinically depressed person who might be only one doctor’s visit short of an effective prescription drug to allay their concerns about the future.

One more reason it’s hard to argue against fairly stringent requirements: the irrevocable nature of suicide.

On the other hand, the roadblocks or outright illegality in much of the world make an already fraught process all the more so when such a decision has been long and well-considered.

Based on a person’s sober assessment and unwavering desire to save themselves and everyone involved in their life possibly years or decades of additional, intractable suffering, what is to be gained by making it difficult and, for many people, impossible, to leave this mortal coil when, in Bloom’s words, “the end of the body will be long after the end of the self.”?

The person and relationships everyone knew gone, vanished, a gaping vacancy now where it had once been teeming with life and history and everything that defines our humanity.

“No thanks,” such a well-considered decision states. “I’ve seen too much, and I’m not going there.”

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For my own part, I’ve got an appointment with my doctor next month to discuss and test for some “cognitive issues” I want to learn more about.

I’d classify my stance at the moment as one of “concern” rather than “worry,” that concern having to do mostly with noticing much more of the “Swiss cheese” phenomenon (irony unintentional) regarding gaps in my memory in recent years, marked by increasing difficulty with short-term recall.

“Where was I and what did I do yesterday?” (Or the day before.)...Think…think… (the thought yielding a momentary blank…), maybe think one more moment, looking out the window or picturing my car…“Oh yeah, THERE it is!”, the doings of my day, literally a snapshot mental picture, finally crossing my mind, most all of it coming into focus.

Turns out the memory is still there, but it hides itself much more frequently, as if my memory storehouse in the hippocampus endures periodic small landslides overnight and needs me to man a shovel in the morning, ready for some excavation work.

This process of retrieval normally doesn’t take too long, but it used to take no time at all, and the longer it tries to go back in time, to three days, four days, or to that movie we saw two months ago (“I did? Tell me more about it; I need to form a picture”), the more laborious it is. Increasingly, I’m jotting a brief entry before bedtime—which I usually remember to do!!—in a  five-year diary I use to also help greatly with recall over even longer time periods. Consulting my phone to see if I took any snapshots that can orient my memory also helps—one more rationale for pulling out my phone as much as I do.

Just the effects of normal aging?

I hope so. In most other ways—basic cognition, social and intellectual function, physical exertion capacity—I think I’m normal, going as full steam ahead as is possible and reasonable for someone my age. And there was good news in a recent appointment, when the intake nurse presented me with a blank sheet of paper and asked me to draw a clock with all the hours in place, then instructed me to add in the hands denoting “10 minutes till 11.”

My lifelong abject artistry notwithstanding (very early sign of dementia??), my clock work was noted as “normal” in the doctor’s notes made available to me later that day, and lo and behold if Bloom doesn’t reference that very test:

“If you can’t ace the clock-drawing test, you probably have some kind of cognitive dysfunction. If you can do well on it, whatever is wrong with you is probably not dementia.”

Other such quickie tests include counting backwards from 100 by 7s and reciting your Social Security number and then doing so again—but backwards. (Doing that right now, are ya? Of course—it’s irresistible. I did all right on those, and I hope you are, too.)

But what if my memory loss were to intensify, to the point where not only do I grope for a friend’s name whom I may not have seen for a while, but suddenly wonder whether I know this person at all?

Or on my way to fetch some half-and-half at the corner grocery, I find myself in the parking lot at my doctor’s office instead?

Part of our human capacity for self-delusion is to pass such incidents off as just a momentary failure of attention—until we drive off to town as Ameche does in search of a car part and he comes home five hours later, having driven “all over eastern Connecticut” while Bloom worries herself sick at home.

So let’s say something like that happens and subsequent test results come back and they are sobering, expressly stating I may have a serious form of dementia that is likely only to worsen with time.

“How much time?” I would first ask. “And at about what rate is it likely to progress?”

And if the answers are “not much” and “steadily,” I know exactly what I would do. Lingering for years in a demented state, my mind and my life no longer my own, the people and their histories I have loved intertwining with no longer recognizable to me, is abhorrent in all the ways I have observed and imagined over many years, and many ways I have yet to imagine, I am certain.

Some people may opt to make the best of that bad situation, soldiering on for their own reasons, whether religious or familial or hopeful of future treatment breakthroughs. Not me, though.

***

“He abhors compromised existence.” That was a quotable about Ameche by a therapist-friend whom Bloom recruited to interview her husband for a crucial letter Dignitas required in order to confirm his mental competence in requesting suicide.

The letter was sent off even as that competence was steadily slipping away and Bloom was terrified that all her efforts to grant her husband his wish may fail to come to the timely fruition the laws and protocols require.

Fortunately (strange word, that, but it does fit), the stars align, with the couple’s sheer will, fortitude, resources, support by friends and family and ultimately, Dignitas, delivering Brian Ameche to his final peace in late January, 2020. He arrived there on his own terms, leaving behind a story and a wife in whose hands that story appears to be striking ardent, universal chords.

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Deep appreciation to the photographers! Unless otherwise stated, some rights reserved under Creative Commons licensing.

Elizabeth Haslam, whose photos (except for the books) grace the rotating banner at top of page.
 https://www.flickr.com/photos/lizhaslam/

Library books photo by Larry Rose, all rights reserved, contact: larry@rosefoto.com

Man and fire by Adam Wilson, Edinburgh, Scotland  https://unsplash.com/@fourcolourblack

Graphic artwork, “The Grief Bringer” by CapCat Ragu, Portugal  https://www.flickr.com/photos/capcatragu/

Ameche and Bloom portrait by Elena Siebert, New York City, all rights reserved  https://www.elenaseibertphotography.com/

Blur trees by Andrew Hidas  https://www.flickr.com/photos/andrewhidas/

7 comments to Answering Alzheimer’s: Amy Bloom’s “In Love: A Memoir of Love and Loss”

  • mary  says:

    I read this book over a year ago when helping to care for a friend in the encroaching and disabling stages of ALS. His circumstances were already too advanced to be able to find refuge in either Dignitas or a right-to-die state here in America, a very very cruel fate. He bravely chose another route to end his suffering (and it was very real suffering) while he could, knowing that any new morning might find him sufficiently compromised that the decision would be left to the hands of an equally restricted medical community, entrusted by law to “care” for him.

    Typing here with my left index finger, my sweet newborn baby granddaughter asleep in the crook of my right arm, hoping fervently that all my own systems hold up so that she and I are able to really know each other in the years ahead. Even if I don’t suffer the fate outlined in this wonderful book….how many years do I have? Surely the bit of wisdom I’ve been able to glean tells me two things: 1) fewer years ahead than behind and 2) don’t waste a minute.

  • Jonathan P.  says:

    I watched a favorite uncle linger much too long and it put major financial stress on his family. Amy Bloom was lucky to be able to afford the cost of going to Switzerland but it would have been much worse putting him in a facility, which can drain a fortune if it goes on for a long time. So financial worries go on top of all the emotional burden that dementia brings. It’s an impossible bind.

  • Angela  says:

    One tragedy that is so apparent from Bloom’s book is that the medical community is both restricted and reluctant to discuss options for humane ending of life, right in line with our culture’s reluctance to face and discuss it.

    Handed a diagnosis like this it would seem appropriate to offer options to people who know that choice is slipping steadily out of their hands and that they and their loved ones will be headed for a dark, difficult and sometimes journey.

    Not that witnessing and caring for a dying loved one is without merit…it is often an honor, and our last years, days and hours can be as meaningful as any other part of life. Bloom illustrates that so clearly. But, as she also illustrates, left to their own path diseases such as ALS and Alzheimer’s are a prison for all involved. There are valuable lessons and meaning but at an enormous and cruel cost.

    So instead of more or less encouraging people to put their heads in the sand and play chicken over the bridge of their final days, what if your doctor said “this is roughly how this will play out…here are your options for valuing the time you have left and directing the course of its ending.”

    That looks like care and compassion to me.

  • Andrew Hidas  says:

    Mary, I suspect Ms. Bloom would greatly enjoy that image of you reading and typing with your granddaughter tucked in your arm. As you know from reading the book, she writes very affectingly of the boon her grands were in Brian’s life, and vice versa. Yes, ALS presents a whole other level of legal/moral quandary, about which our current laws & mores are woefully insufficient. Sigh…

    Jonathan, the financial squeeze you reference falls all the worse on those without an abundance of resources, which, if we consult statistics on the financial health of Americans, strongly suggest represents the vast majority of our population. How we will deal with that as hordes of baby boomers come into the care system in the near future is anyone’s guess, but it will surely be a huge drag on the economy. Thanks for bringing this piece of the issue into the discussion.

    Angela…and then there is the medical system—arghh! Clearly we have ill-equipped it to confront the reality and ubiquity not only of death itself, but of a long and lingering death, and what a health provider’s role in it is. What they can & can’t say, can & can’t do, depending on what state they’re in, what the utter guesstimate is of a person’s remaining life, etc. etc. So we just bumble along, and hope something works out tomorrow. Clearly, it’s not working, but as I mention to Jonathan above, we won’t be getting out from under this ever deepening challenge anytime soon, given the demographic realities staring us in the face. O.K., I’m off for a walk now; sun’s out! :-)

  • Angela  says:

    For more on where we are with this issue in the United States, take a good look at the book The Inevitable: Dispatches on the Right to Die by Katie Engelhart.

  • Jay Helman  says:

    This post is quite timely personally as I have a 64 year old friend with Alzheimers diagnosis. Despite medication, it continues to worsen and become more evident to those close to him. I so badly want to help him and his wife cope with the horror of this situation, but am at a loss as to what that might be. There is one grandchild, with another due in December. I am wrought with wondering when one knows that the point of no return has arrived. There are stretches of clarity and lucidity that would suggest he has a long way to go, and yet confusion and short-term memory continue to worsen. As a 14 year survivor of a TBI (traumatic brain injury) brought on by a severe stroke, I am often left to ponder how much of my aging brain is due to the injury or simply the aging process. These are very difficult issues, and are made more so by the sensitivity we have in discussing them. Thank you for opening up this topic.

    • Andrew Hidas  says:

      Dementia at any age is devastating, but it lands with a particularly heavy blow when it’s early onset, even before Social Security, Medicare and the so-called “Golden years” kick in. `It robs two people of those years when a spouse is involved, and now those grandkids who’ll never know the person he was, and his wider circle who have truly “lost” him, no matter how many more years his body lives on. I’ve now outlived in age my brother (brain disease, but not dementia) by an entire decade, and thinking of this decade, and all that it has entailed, I mourn for what he missed, and what all of us left in his wake missed of his good and worthy life that was cut so short. All I’d say about your friend and his wife is to keep “showing up” where you can—for both of them, because it’s likely to mean more to her in the future than it will him.

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