My husband Jon, a molecular biologist and social activist in science, was 85 years old when in 2020, we received his diagnosis of early Alzheimer’s disease.
Since then, I‘ve been writing about our experience, as I seek perspective on it.
I wrote these personal essays in the hopes that they will be shared widely.
Sincerely,
Barbara Beckwith (June 2025)
beckwithb@aol.com
On Learning to Care
Personal Essays on one couple’s Alzheimer’s Experience
- On Learning to Care
- We Were in it Together – Until We Weren’t
- I Made Every Mistake – Tho I Knew Better
- Learning to Converse with My Husband
- Still Jon
- Visitor to My Husband’s Life
- How Do I “do” this Last Stage of Our Lives Together?
On Learning to Care
Recently, at my local theater, I was mesmerized by the solo performer’s portrayal of 12 different characters. Mid-play, however, a white-haired couple seated close to the stage started talking in low but agitated murmurs. I was annoyed, and worried that the actor might lose concentration, especially when the couple made a commotion as they rose and left for what I assumed was an urgent restroom need.
When they returned, the man’s halting gait, anxious questions about where to sit, kept irritating me, until it dawned on me that what seemed like rude behavior was most likely cognitive confusion.
I grew up unacquainted with old people: my grandparents died before I got to know them. Our suburban neighborhood was populated by nuclear families, only one of which included a grandparent. Back then, any elderly person who became “out of it” disappeared into an “old age home,” and it was considered impolite to inquire about their wellbeing, much less to visit them.
But now, as members of my own family are experiencing mild or significant cognitive decline, I am belatedly feeling deep chagrin at the demeaning ways that, over the years, I have viewed people living with memory disorders.
One such view was that a sure way to amuse friends was by telling “ditzy old folks” stories, especially the one about my husband’s grandmother, who would repeatedly ask “Want some more salt?” as she poured it on a family member’s soup or sandwich.
I’ve also taken cognitive impairment as an affront, as when an older woman I visited often started to imagine that her nephew was stealing from her. Her suspicion persisted, despite assurances that he couldn’t have done so because he’d moved to Florida. She “knew” he must have an accomplice. When she demanded that we agree, I stopped visiting, valuing “the truth” over empathy for her fear and distress.
I was so oblivious, in fact, that I was unable to recognize the varied ways dementia can show up. After a colleague invited me to visit with her parents, one of whom I’d heard had Alzheimer’s, I spent time with the couple but mistook the quiet man to be the one experiencing the disease, not the garrulous woman.
And I was taken aback when a neighbor saw people who weren’t there, and imagined terrifying scenarios. When her husband asked if I’d stay with her one afternoon a week to give him a break, I demurred, unable to appreciate that her unstoppable worry about “children in danger,” came out of her life-long caring for young people, as a parent and teacher.
Looking back, I now see that at the core of my regretful behavior toward people with cognitive decline was my own feeling of discomfort, fed by ignorance.
Now that the condition has hit close to home, and I have become a caregiver, I am eager to learn from those who are willing to share their experience, ignoring the disease’s persistent stigma.
My eyes were opened by Richard Taylor, author of Alzheimer’s From the Inside Out, who is both frank about his progressive cognitive loss and clear about his continued self-worth. My heart is touched by Olivia Ames Hoblitzelle who with her husband Hob shared their experience in Ten Thousand Joys and Ten Thousand Sorrows: A Couple’s Journey through Alzheimer’s. I admire the decision of Harvard Law School professor Charles J. Ogletree Jr., who a year after being diagnosed at 62 with advanced Alzheimer’s, went public in order to raise awareness of the brain disorder, especially since he knew how African Americans like him are often diagnosed too late to benefit from mitigating medications.
Now, when I see an older couple and notice that one is being gently kept from crossing a street with a flashing “do not walk” sign, or steered away from putting groceries in the wrong cart, or who is holding up the line at a store while attempting, to no avail, to give the cashier the right combination of coins, or whose agitation is disrupting a theater performance, I find myself settling into calm patience, as my heart goes out to the cared-for and their caregivers.
We Were in it Together–Until We Weren’t
We’ve always done things together, my husband and I. We fell in love in college, married and raised two sons, biked and hiked, cooked and danced, shared our disparate views and careers, he as a scientist, I as a writer. We learned together how to argue successfully, how to be okay with each other’s backseat driving, from shouts of “slow down, it’s icy!” to “watch out! – the truck on your left is cutting you off!”
Our togetherness has changed since Alzheimer’s entered our lives. For a while, though we were told he had “mild cognitive impairment,” and even when it shifted to “early Alzheimer’s,” we remained a team.
For more than a year, we together managed his meds, paid our bills, struggled to complete our taxes. We made socializing with friends a joint challenge: he’d start a story, and I’d supply the name of a French town, favorite film, old friend, justice issue, book title, historical fact.
As his condition changed, I resorted more and more to “20 Questions” guessing, as we both struggled to find the word he was searching for, what story from our joint past “we” could tell.
During the three years that my husband remained at home, “we” shifted to those of us who cared for him. Family members who took over the finances. Friends who offered soups and casseroles, when shopping with him became too difficult for me. Hired “companions” who I greeted with tears, grateful for the caregiving time off they gave me. Neighborhood pre-teens who listened and responded with respect when he talked to them – about what they could only guess.
Before my husband had to move to a memory care facility, we “care partners” had to confer with each other behind closed doors over how to deal with multiplying crises, which in turn created new problems. He noticed and grew suspicious, accusing us of not telling him what was going on.
And he was right: we were not telling him what was going on. As we were becoming close as a team, my husband seemed to me to be drifting away from his former self.
At each neurology appointment, when asked how he felt, he’d say he felt fine. Then I’d be pulled aside and asked – how is he really? And how was I? Was I safe?
Was I safe? Depends on your definition. He often became frustrated. He thought I’d hidden his wallet, his hat, his glasses. He would imagine projects that didn’t exist and accuse me of not helping him achieve them. He would throw around papers or books, and bang on the table or wall in anger.
Even though I knew it was the disease that was making him angry, I initially over-reacted. I found myself responding as if to a domineering man. If he yelled, I would shut myself off in another room and shout: “Don’t you get violent, or I will call the police!”
My threats didn’t work, and anyway, he didn’t hit me. What calmed him would be an apology from me for hiding his hat, taking his wallet, or blocking his project – whatever he thought I’d done. I could then shift from being his adversary to being his collaborator: “Let’s look together– I’m sure we can find it.”
My friends told me I was doing a great job taking care of him. But my need to be constantly on alert, ready to respond to confusions, accusations and outbursts – plus the lying I had to do, got to me. I resorted to pacing our apartment or roaming the neighborhood streets, babbling, “I’m a good person, I’m a good person.” I started seeing a therapist to better understand what was happening, and to keep myself under control.
Now, four years later, I regularly spend time with my husband in his memory care place; it’s within walking distance of where we lived together for 50 years. In his new home, we don’t need to argue over where he misplaced something. He can tell me which staff or residents he likes and which he imagines have taken his belongings, or are trying to kill him. I now know to respond with a sympathetic “hmm.”
We go to live jazz performances, join in on folk song singalongs. We look at photo albums, listen to music, hold hands, dance a bit, embrace a lot.
We’re together again.
I Made Every Mistake, Tho I Knew Better
Until my husband was diagnosed with Alzheimer’s, I was ignorant of – even indifferent to – the debilitating condition that had already begun to affect our lives. I’m of a generation that assumed that older people exhibiting confusion and memory loss needed to be put somewhere – out of sight and out of mind.
Even now, despite educating myself by reading dozens of books by medical experts, caregivers and people experiencing the disease, as well as by joining an advice-sharing support group, I’ve made every caregiver mistake.
Why has it taken me so long to absorb what I was reading and hearing?
When my husband and I got his diagnosis, at first of “mild cognitive decline,” we pondered together when “it” might have started. Was it when he stopped doing the New York Times crossword puzzle? When he sat in on the classes he once taught and realized he couldn’t follow the discussion? Or when he didn’t remember his grandsons’ names? When he had two car accidents that he was sure weren’t his fault?
We thought we were coping. We figured out mnemonics to solve the grandson-naming problem. He took pills to slow the disease’s advance. I learned what’s involved in bill paying, furnace upkeep, cable TV streaming. We joked about writing our own obituaries; after all, we were both in our 80s.
But my husband became increasingly frustrated: “I don’t know what’s going on. How do I figure my age? I can’t understand calendars. I can’t even talk – my brain.” Although I tried to reassure him, his frustration increased. If I told him that his shoes were on the wrong foot, or that he’d set the heat for 85, he’d tell me “I never did that,” and accuse me of disrespect.
By this time, I’d learned the Alzheimer’s Association mantra, “You can’t change a person with dementia: you can only change yourself.” Yet I hung onto how, during 65 years of marriage, we’d learned to openly argue, explain, concede, and apologize, not go to bed mad. So now I proclaimed: “We’re having a communication problem: you say I wasn’t being respectful, and I feel you weren’t being respectful. Let’s agree: I’ll say I’m sorry, if you’ll say you’re sorry.” My even-handed reconciliation idea failed. His anger persisted, I backed down, but along with relief, I felt personally humiliated.
Any raised voice or insistent tone, even in a moment of urgency (“Don’t cross the street yet – cars are coming!” “You can’t go out to the lab – it’s nighttime!”) he’d see as abusive yelling. When he vociferously refused to take his pills (“The blue one will kill me!”) I would panic and respond at the same decibel level, which backfired. More I’m sorrys. My caregiver support group eventually urged me to add his pills, crushed, to ice cream, or to just back off and try again later.
Gradually, he started losing his awareness of social norms. When friends would visit, he’d interrupt them to say whatever was on his mind. Again, I took his behavior personally, as if it reflected badly on both of us.
He would talk to strangers, children, and even couples in deep conversation. He’d approach tall white-haired men, assuming they were colleagues with whom to swap research projects. I’d make a “no need to respond” gesture from behind my husband’s back, then feel shame for doing so.
Just as the disease was degrading his ability to feel what was going on with others, I was losing my empathy toward him, privately blaming his “rudeness” on his being a man. I kept focusing on my sense of what was right. Changing myself for his sake would not be easy.
A year ago, I moved my husband to a memory care facility, where my “quality of life” hopes for him rose. Another mistake: I wanted for him not just safety and care, but everything I’d wish for myself: lots of new people, constant stimulating conversations, fresh insights.
I was hampered by my image of a good life, ignoring his individuality. We’d always differed, in large and small ways. His mind had been elegantly analytical – mine loose and creative. Nevertheless, we’d always bonded over music, activism, and mountain flora, especially alpine flowers — though he loved their colors, I, their shapes.
In memory care, I’d urge him to “do stuff” – walk, sing, try unfamiliar games. “Don’t push me,” he’d say, crossly, sometimes flailing his arms in anger. And he was right. By now, I should be using the gentler Alzheimer’s-specific persuasion strategies I’d read about.
I started to take cues from the memory care staff and the aides. I saw them always greeting him by name, softly deflecting his anger, “redirecting” him if, at the end of a visit, he resists my departure. Before removing his jacket or shoes, they respected his need to be asked. Observing his dislike of commotion, they sat him at meals after everyone else was seated. They honored his right to say no to activities, to a meal or to jacket-removal, having learned that asking again later would usually get a yes.
Gradually, as I’ve been refraining from pushing my husband, I’m opening my eyes to where he finds pleasure. Hanging out in the park or lobby to people-watch. Foot-tapping to his favorite music. Lounging on the couch as I rub his head (“mmm” he murmurs). Strolling in the garden to enjoy the trees, birds, an occasional rabbit, and flowers of all kinds.
Our life together may have changed dramatically, but we both can savor those flowers — I, their shapes, he, their colors, each in our own way.
Learning to Converse with My Husband
I’ve often had to change my conversational style to better communicate when traveling abroad: to use vigorous gestures in Italy, tone these down in England, roll my r’s in Mexico, soften them in Greece, smile in Japan, refrain from smiling in France.
So I should be able to adapt as I learn the new language I now need to converse with my husband when I visit him in his memory care facility.
Yet I’m discovering that each person experiencing Alzheimer’s has his or her particular way of communicating.
My husband was a professor, and still speaks like one. “This organization is problematic.” “What’s the status?” “It’s not relevant.”
People he talks to may assume from his reasoned tone of voice, and his perfect sentence structure, that they should understand what he’s saying. I often have to indicate, with hidden gestures, that they ought not to ask for clarification. Because clarification doesn’t work.
What my husband is talking about often eludes even me. Yet he clearly has topics he wants to discuss, from what he’s experiencing, people he likes or dislikes, events he says took place high up and near water, to worries about children he imagines being endangered.
I mostly listen and sympathize. The challenge comes when he asks me if I did that, was there, knew that. I’ve had to become proficient at being unsure, murmuring “maybe, a little, I’m not sure.”
I’ve given up telling multi-faceted stories: I now pare them down to short chunks. And I no longer think he’s rude when he interrupts me to say what’s on his mind. It’s just the way his mind now works.
I’ve also picked up conversation tips from other visitors to memory care residents. “I like your blue cardigan,” one visitor said to a silent group of women. Doing so made the woman feel seen and heard: she spoke up, sharing where she bought her garment and what she likes about it, inspiring the others to join in and do the same.
I am cheered when my husband shows delight or insight – an occasional “This place is great!” or “Living takes time!”
But when he gets upset: “I’m not functioning. I can’t read, I can’t write, I can’t do anything!”, my role is more challenging. I’m discovering that raising my voice to reassure him doesn’t work. I now try to stay calm when he takes offense at something I’ve said, often admonishing me to “Be more careful in your wording” as if I’m a grad student in need of mentoring. I no longer feel hurt by his occasional “I don’t trust you!” outbursts. Instead, I say I’m sorry, folding my arms against my heart to show I care, which reassures him more than words can do.
I am comforted by the words of Alzheimer’s counselor Dasha Kiper, who writes: “All conversation is, in a sense, hopeful.” She’s referring to Samuel Beckett’s nonsensical dialogue in his play Waiting for Godot, and to conversations with people experiencing Alzheimer’s. I try to remember her reassuring perspective: “By conversing we create and acknowledge the possibility that clarity, meaning, and connection exist even when there appears to be only strangeness and futility.”
So my husband and I continue to converse, as long as it’s possible.
And when verbal conversation is no longer possible, I’ll lean my head on my husband’s shoulder, my hand gently circling his head, using a way of communicating that we have always known and shared, that can speak my affection as clearly as words once did.
Still Jon
Over the last few years, I’ve heard — or overheard — people refer to residents of my husband’s memory care facility in ways I can’t relate to.
A devoted wife calls her Alzheimer’s affected husband “brain dead.” A dedicated paid companion says of his charge that “you just have to treat her like a three-year-old.” After a live jazz performance, I overhear the pianist joke to his bass player about “another day playing for zombies.” A friend says her former partner is simply “not there.”
Each such remark hurts, because to me, even five years into his Alzheimer’s diagnosis, my husband Jon is still absolutely the man I fell in love with and still love. His preoccupations remain those of the provider he once was: “where’s my wallet, I need it,” “children are in danger,” or, when I propose a walk, “I don’t think we paid for it.” He persists in needing to be in charge: If I try to help with his peeling of a banana or orange, he reprimands me: “We have to decide on the order.”
He is curious: “Who are you?” he asks new people (and sometimes me). When he watches me write (his memoir is in the facility’s library), he wants to know “How do you get those words?” Noticing a new red towel, he asks, with professorial seriousness, “but what does it mean?” He searches, as he did as a microbiologist, for significance.
I admire how his observations and concerns manage to get through his brain’s “tau tangle” and “amyloid plaque” obstructions, like deer weaving through dense foliage. Although I rarely understand what he’s referring to, I respond with “yes” or a “hmm” so that he knows I’m interested. Which I am: each fragment fascinates me.
We attend his facility’s live music events. At folk singalongs, we join in with the guitarists, singing “Oh Susannah” or “This Land is Your Land.” When the jazz trio (Jon has been a jazz afficionado) finishes a piece, we clap along with others. Some may have seemed to be comatose (“zombies”) yet open their eyes and raise their hands to join the applause. Music reaches even those who no longer talk or walk.
Most of the time, Jon wants me to sit with him and rub his head, as I’ve done all our married life. As my hand circles his brain, I let my thoughts float free, bringing to mind those Tibetan meditation bowls’ resonant hum, which starts with a rub around its rim and keeps vibrating, needing no further stirring.
Meanwhile, I am aware that friends and family are busy racing through life, as Jon and I once did, pursuing as many experiences as can fit in a day, rarely pausing to fully feel each moment, which we now do. The sensations Jon and I share now are good enough. Just being with him is exactly where I want to be.
Yes, Jon is now in hospice, and yes, he’s getting weaker, quieter, more confused. But he’s not a three-year-old. He’s not brain dead or a zombie. To me, he’s whole, beloved, still here.
Visitor to My Husband’s Life
When I moved my husband into a memory care facility, I felt that I should leave the support group I’d been part of for the past five years, where people shared challenges they faced as they cared for Alzheimer’s-affected loved ones at home.
I no longer face those particular challenges: I now spend just hours with the man I’ve shared my life with since the 1960s. I pour myself into each hour, often leaving “his place” exhausted in body and mind.
Yet memory care aides are now the ones ensuring that he gets dressed, showered, fed – and kept safe, which I’d finally become unable to do. I visit my husband’s life, but they’re in charge of taking him to exercise, music and social events. And if he prefers to stay in his bedroom, they’re responsible for checking on him every 15 minutes, and dealing with whatever stuff comes up.
And stuff does keep coming up.
In the first months, he awoke at night and wandered the halls and community room. Only after the night shift offered him a midnight snack and conversation, could he be persuaded to return to his room.
Some weeks later, he panicked while being showered: two aides were now needed to handle that necessary job, so fierce was his get-away-from-me grip. He thrashed out in alarm, as well, at the barber and podiatrist, despite the calming techniques they sought to apply.
I brought in clippers to trim his toes, his old-fashioned razor to help him shave, and scissors to keep his beard under control, staying constantly alert for sudden moves that might cause me to cut the man I love.
Although his closet held familiar clothes, when aides pulled even a favorite t-shirt over his head, he reacted with fear at briefly being unable to see. I stashed those shirts and replaced them with ones he could button himself, albeit unevenly — which I learned to let be.
When shoelaces became a problem, I bought him slip-ons. When I saw that he liked to slip them off right after they’d been slipped on, I let that be as well.
Later, his hats, CDs and photo albums started to turn up outside his room. At first I blamed the staff for losing them, but eventually it became clear that my husband liked to leave his belongings in the “living room” – or in the rooms of residents who kept open the doors to their bedrooms.
Yes, he enjoyed the photo album I made for him, but he also enjoyed ripping out its plastic-protected photo pages — what drove him to do this I couldn’t discern. I found an album that was more difficult to destroy, although I couldn’t save the large poster of himself that he tore down – the cover of his memoir.
With help from a son who’d just retired, I spent much of my non-visit life conferring with my spouse’s doctor, memory care director, facility nurse, while also scheduling visits by friends and colleagues, all of us trying hard to provide him with “quality of life.”
Half of our quality-of-life ideas failed. The “simple” CD player had a glitch: if you forgot to hit the off button, the music continued to spin, wearing down the machine. The granola bars we brought seemed like a good healthy snack idea until we saw one that had fallen behind his bureau, attracting ants.
During my visits, I’d intend to just “be” with my husband but instead would find myself scanning the room for missing eyeglasses or stray slip-ons, or thinking about how I might get him to go to the garden, see a live music performance, drive in the car, or walk around the park. When I took daily walks to “clear my mind,” they’d get cluttered up by problem-solving rumination.
Back in the house we shared for 50 years, each room is a reminder of our decades together. Their shelves of books conjure up ideas, passions and causes we shared, as well as those we didn’t, which often led to our deepest conversations.
Our rooms hold old letters, as well, that recall what attracted us to each other. I never did understand his scientific research and he didn’t always connect with my teaching or my writing. Yet he once wrote me from a scientific conference in Paris: “I hate myself for not having you here. I’m missing something when you are not appreciating things, even things I don’t like.”
Like my husband’s experience with esoteric science, his experience now with Alzheimer’s remains a mystery to me, a mystery I can “let be.” After all, no matter how close I may feel to friends, neighbors, colleagues, and even family, I also know that we are all only partially knowable to each other, all visitors to each other’s lives.
So I will stay in my Alzheimer’s support group, because yes, I am still a part, at least, of my husband’s life, and he will always be a part of mine.
How Do I “do” This Last Stage of Our Lives Together?
My husband Jon is now getting hospice care, based on medical experts’ assessment in January that he will die from “complications of Alzheimer’s disease” within six months. It’s now July and he is still with me.
I study how people with Alzheimer’s may go: via pneumonia, a fall, a heart attack, or refusing food and water. I know the six months prediction is not set in stone, but I visit Jon every day, just in case.
He now spends his days in a movable Broda bed-chair, since his brain and legs no longer coordinate well enough to allow him to walk. When meals are served, he sometimes feeds himself; sometimes he is fed. He shares what’s on his mind, often in indiscernible sentences but sometimes in clear declarations. “Let’s go” after an hour outside in the sunny garden. “It’s freezing!” on returning to air-conditioning.
Memory care aides take good care of him, and a hospice “friend” visits twice a week to hold his hand and respond to whatever he says. Hospice also provides a nurse, a social worker, and any needed equipment. I’m offered a spiritual advisor, which I decline: my family, friends, therapist, and caregiver support zoom, suffice.
Two memory care residents also “in hospice” died recently, so I realize that any day could be his last. I feel a deep need to spend time with him physically, not as the lovers we were for the past 60 years, just as skin-to-skin intimates. Most of the time I simply stroke his arms, chest, legs, beard, and ask, with his permission, for a kiss.
Meanwhile, I feel suspended in time, knowing this final stage’s duration is not set in stone. I find myself scanning my newspapers for obituaries that mention Alzheimer’s as cause of death, and wonder if “complications of pneumonia” or “died after a long illness” were meant to avoid naming the disease that’s now pervasive.
One in three of us who reach 85 will experience it.
Oddly, Jon being in hospice is leading me to contemplate my own eventual demise. After all, I’ve surpassed my mother’s 69 years, and may possibly surpass my father’s 98, now just 10 years away. I don’t picture myself living any further.
As I focus on moving my husband’s books and papers to archives honoring his science and social justice activism, and giving our sons his record collection to sell, I’m beginning to pare down and give away my own stuff.
And when I visit my local cemetery, I’m aware that I’m deciding where our joint cremains will go. I look at 21st century gravestones for inscription ideas. Neither of us would want old fashioned “dearly beloved.” Instead, maybe something like “onward!” as a friend’s stone declares.
As for choosing the wording, I am conflicted about whether to use my husband’s full name or simply “Jon” as everyone knows him by. Which raises the core existential question: who cares? The next generations of our family? Friends and colleagues? Future historians? Amateur genealogists? My inscription decision remains on hold.
I do line up a funeral parlor to handle “transport” when the time comes. And I choose a memorial venue, already worried about whether I can stave off tears.
As for Jon’s obituary, when I attempt to draft one, I find myself unable to proceed. I can’t bear to write in the past tense as long as he is still belovedly present.
Instead, I play with writing one for myself. I’d like it to start something like this: “Barbara Beckwith died at age 99 after a fall on ice while walking to her neighborhood café for her morning croissant and coffee.” The rest I’ll leave to family to write “when the time comes.”
As I struggle with accepting Jon’ s eventual demise, I’m at least becoming comfortable with my own.
