Andy Hasselwander is an old friend and was once my college roommate. He doesn’t write for a living, but he’s quite possibly the most talented writer I know. He wrote this and I wanted to share it with you because it’s beautiful. It’s also long, so be sure to settle in with it when you have time, or read it in chunks. But please read it.
Afterword from Andy at the end.
—LW
I.
My mother is dying. She is 82 years old. She was born in 1941, the August before Pearl Harbor was attacked. She grew up on a leafy street in Rochester, New York. Her father worked for Kodak and overachieved his German-American immigrant status and two-year business degree to become an upper middle manager. Her mother was an Irish Catholic homemaker. She had a brother, Tom, who was younger than her, but died almost a decade ago. Her circle of friends and family has shrunk, like her body. She has her husband, me, my wife, and three stepchildren—my brothers and sisters.
The 1980s and early 1990s were her golden age. She was a socialite, wife of an executive, naturalist, quilter, and mother. She bought a sports car and drove it fast, bragging about how she didn’t need to shift out of first gear until it hit 50 mph. She spent her summers in the Adirondacks, walking the trails around her house and swimming a mile a day in the wilderness lake down the road. She became a 46-er—someone who has climbed all 46 peaks in New York State higher than 4,000 feet. She traveled all over the world with my father, chronicling her travels in albums with each photo carefully placed and labeled. She read voraciously—Roth, Updike, Atwood, Bellow, Stegner—and understood what she read. She painted watercolors, took up collaging, and played piano—Bach Etudes and Beethoven Sonatas—every day. I love her very much, especially this remembered version.
II.
Dying isn’t what you think. Doctors don’t give you “three months” or anything precise. People want answers—but the dying don’t have them. At the same time, nurses have an intuition for it. Yesterday, she wasn’t dying, but today, I have been told, she is. You want to know “will it be tonight” and it shames you to say it, but the thought of it is exciting. At least something will happen.
My mother hasn’t been herself for a long time. She has what we call vascular dementia, but we don’t really know if it’s that or Alzheimers or something else. No Doctor has ever really diagnosed her; she eased into it, and several years ago, caregivers would start using the term casually. She’s had something wrong with her for at least 15 years—or maybe longer. We talk a lot about “when it started”, rehashing strange events or bizarre behavior. “Was that it?” we ask. It’s a foolish exercise, but somehow it is comforting to try to separate her from her illness.
What dementia means, having seen it all too closely, is a decade-long shutdown of the brain and body. In hindsight, it progressed very methodically and predictably, but going through it, it moved unpredictably and chaotically. Long periods of stability would be followed by sudden degradation. Every prediction and decision we made to help her or ease her suffering or make my father’s life easier was wrong and foolish in hindsight, but in retrospect, with the information we had at the time, was rational. Even now, her body surprises us with its resilience over the short run, even as it decays inexorably.
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The curve steepened sharply four years ago. When Covid arrived on the scene, she was still living in my childhood home. Like many elderly people, she and my father locked themselves up to avoid the virus for five months. I would call them every other night to see how they were, and to remind them to wear masks when the grocery delivery people came from Wegmans. She would tell me each time we spoke that “we don’t know anything about this virus.” I kept saying no, mom, we know a lot, but I realized eventually that she meant that she was confused about the world generally, and wanted me to agree with her. So, I told her she was right--we don’t know anything.
Their isolation ended when I met my parents at their—now my siblings’ and my—second home in the Adirondack mountains on a warm week in August. Cuomo had given the all-clear for Marylanders to enter New York; my adopted State had temporarily gone below some made-up threshold metric of cases or something. I was thrilled to see them; it had been eight months since Christmas, when they had been able to fly to Reagan National Airport and visit for a week or so. We agreed that I would get to the house first, and wait for my test result to come back negative before they came, to avoid any infection risk.
I remember their car pulling up the driveway—the last time I would ever see my father drive. They were feeble but in a normal eighty-year-old way, and we had a happy reunion. I gave my father a haircut with the clippers we had bought to avoid barbershops. My mother enjoyed this spectacle greatly, watching the long silver locks fall to floor to reveal a pink scalp and a #2 buzz cut.
She seemed fine at first, but her energy waned within hours. People who have lived with someone with dementia know the “act”, a temporary show of normalcy, similar to a drunk taking extra care speaking and moving to avoid slurring and stumbling. This theatre drains the person’s energy quickly. My mother’s retreat was always the couch—first with a book, then with television, and eventually with nothing. That warm summer day, she retreated to her favorite couch by the gas stove while my father and I talked about the past year.
A few days into the reunion, I was walking in the woods and saw an older man. He was spry and agile, and I realized that I knew him. He was my mother’s age, and as a child, he had brought his family up to camp at the same campsite every summer for a week. We had gotten to know them over the summers, and I became close with his children. For several years, we reunited, they at their campsite, and us at our cabin, making the two-mile walk back and forth, swimming in the lake, and playing in waterfalls. My mother and he became close friends.
He asked about her, and I said believe it or not, she was there. He came by the house later, and my mother couldn’t—wouldn’t—come down to see him. I didn’t press the issue. I told him it was probably for the best. I wanted him to remember her as a 45-year-old swimmer and hiker, dressed in royal blue cotton shorts and a white t-shirt.
Later that evening, I was cleaning the house up, and brought her a disintegrating bath mat. I told her it needed to go. For the first time in her life, she acquiesced. Never before had she let me throw away one of her things. That was the start of a massive purge spanning two homes and three apartments, a four-year marathon of black plastic contractor bags, rolls of paper towels, cleaning spray, consignment brokers, and trips to the dump. When I was five years old, my mother and I would sing a made-up song: “To the dump, to the dump, to the dump-dump-dump” when we would make the trip to town to throw away trash. Now I was singing it again.
My father knew that the 220-mile drive from Rochester to the Adirondacks would be too hard for him moving forward, so he had made a plan. He would leave one of his two cars in the garage at the cabin, and then—this part gets sketchy—would have someone drive him back and forth. So, at the end of our week, my brother drove them back to Rochester and their car was left, battery attached to a slow charger. The car would never be driven by anyone in our family again; my brother sold it to his mechanic for peanuts the next summer.
III.
My father made plans to move into an “independent living” apartment a few miles from their house in Rochester in the Fall. They were in no rush to sell the house, my father said—they had plenty of money—but they needed to downsize. My mother didn’t fight him, which was another surprise. For years, as their house became dirtier, we tried to get her to accept a housecleaner. She refused, alternating between “they will steal my things” to “they wouldn’t be up to my standards.” Now, she was flat out OK with leaving her dream house.
My sister died that first Covid Halloween. She had been ill for a long time, confined to a bed in a Medicaid nursing home, but her death was still a shock. My mother pulled herself together for the memorial service and the burial. We dialed in from Maryland on Zoom, as Cuomo had decided Marylanders were no longer safe to cross the State Line. My father had purchased a green burial plot for her, having read about the trend in the New York Times. He got two extra plots for himself and my mother.
They moved into the apartment a few weeks later. It seemed to be going well for a couple of months. My nieces visited them frequently. They ate dinner in the dining room, but my father told me that people were complaining about mom; she never changed her clothes and wore the same dirty outfit every meal.
I first saw their new apartment—which they would only inhabit for six months—the next April. It was like a way station. Half of their furniture—all faux antique cherry and mahogany that had been all the rage among a certain suburban set in the 1980s—had made it, crammed into about a quarter of the space.
We were there because my mother had broken her hip going to the bathroom in March. After a week in the hospital and another in rehab, she called my father begging to come home, and against Doctor’s orders, he had a medical transport drop her off at their apartment. If he had picked her up himself, he would have realized it was foolish to bring her home when he attempted to get her into the car—but he couldn’t; he had crashed his car and vowed to never drive again a few weeks before.
Within hours of her arrival back at the apartment, it became clear he had made a mistake. She couldn’t walk, and he couldn’t lift her. She soaked their sofa with urine because he couldn’t change her diaper. We were there the next day, my wife and I carrying her to the bathroom to get her cleaned off, and then throwing the couch away, the first of many, many items of previously pristine furniture ruined and then tossed. While we worked, our son and daughter threw a football on the tiny grass strip at the front of their place. I learned that the only way to get her back into rehab was to get her back into the hospital. We called 911, and the paramedics took her away. My father looked down at the floor, in shame and hopelessness.
On that trip, we started the process of selling their house—my childhood home. Most of the furniture was sold for pennies on the dollar, or given away. No one even wanted the Yamaha baby grand piano. In our naivety, we thought that at least an annually-tuned, well-loved piano would find a meaningful home. It turns out no one plays piano anymore. No one wants Stickley furniture or Persian rugs anymore, either.
After we met with the realtor at the abandoned house, my son and I tried to find my father’s lost gold ring where the garden had been. He’d gotten into YouTube videos of metal detection, and I thought we might save the ring, given to him by my mother when they were first married, and lost while he roto-tilled his new vegetable garden, but we only found some nails and bottlecaps. It was a dreary, rainy day as I watched my son scan over the yard where I had spent many summers, looking for one last piece of an old life.
IV.
We moved them to an Assisted Living facility in Maryland in May of 2021. My wife busied herself with buying adjustable motorized beds, linens, and new clothing for my mother to replace the same worn jeans and denim jacket she wore every day. We were impressed with the facility’s dining room, movie theatre, and fitness center. It was just like any other upscale apartment building in downtown Bethesda, we thought. They would thrive here. I imagined my mother regaining her mobility, and walking to our house, or finding a new coffee shop to patronize.
I drove my father from Rochester to Bethesda, taking the scenic route through small Finger Lakes towns, and a medical transport followed us with my sedated mother, who still could barely walk. My father and I were waiting for them in the new, one-bedroom apartment at the upscale building when they arrived in the evening. My mother made a scene, saying that she wanted to go home. We calmed her down eventually. She asked my father how long they were going to stay in this hotel.
I wonder what she knew and didn’t know. Did she know she was slowly dying? Did she ever grapple with the fact that she would never see her home again, or swim in the lake in the Adirondacks? Many caregivers advise subtle mendacity when dealing with the demented; I am not so sure.
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I told her the truth once. She was again upset about the hotel they were staying at (it’s nice, but the staff are rude to me), and wanted to go home. I wrote up a detailed chronology of the events that had happened over the past decade—the hospitalizations, falls, moves, the death of her brother and step-daughter, and her current situation. I handed it to her and watched her read it carefully. She understood and seemed relieved. As I left, she teared up. I asked her what was wrong. She pointed to her head, and said “this isn’t working.”
She kept the sheet by her bed for a few months and would read it every morning. It provided solid ground for her for a little while. Eventually, she lost interest in reading, and the sheet was lost in turn. After that, I never told her the truth. I got very good at lying.
V.
They moved again, in early 2022, to a different “hotel” further out into the suburbs. Bethesda had been too loud and crowded, and we collectively, mistakenly believed that one Assisted Living Facility’s promises were more trustworthy than another’s. In reality, they had traded in their close-by one-bedroom apartment for a harder-to-reach two-bedroom—which ended up being a great thing. It would have been impossible for them to share a bedroom while she was dying.
The new facility was nicely built and had better furnishings, but was having trouble selling units, so the Private Equity company that owned it had clearly put down the thumbscrews on hiring staff. The food was lousy and the care was poor. It has since gotten better. It is now staffed almost entirely with African immigrants. I think they are the only people who want to—or can—do this job.
She fell again and broke her ankle just after New Year’s in 2023. She had broken the other ankle over the summer, spending a month in a rehab facility. I got a call from the Assisted Living nurse saying that an ambulance had taken her to the emergency room, with my father. She had been getting up off the couch and lost her balance. Her bones were so brittle at this point that pretty much anything would cause a fracture.
I assumed that they would admit her, but they didn’t. They put an air cast on, wrote a prescription for extra strength Tylenol (no opioids these days,) and referred her for physical and occupational therapy. My dad called me from the hospital at about 9PM. The new hotel had stranded them there and they had no way to get home. I drove to get them.
It was then that I realized then that she couldn’t move her legs other than pivoting them a bit. She was essentially paralyzed. She couldn’t feel it when I touched her thigh. I dead lifted her into the car, somehow avoiding an injury to either of us.
VI.
There were other medical issues that had piled up, too—diabetes, liver issues, vascular problems, all kinds of whacky blood work. She refused the physical therapy for her ankle, and permanently moved herself into bed. She now slept about 18 hours a day. Her physician finally recommended comfort care—hospice. It would be inhumane to keep shuttling her back and forth to the hospital for tests and scans and treatments.
I was worried when hospice admitted her. She was smart, she would know that hospice meant death. I was surprised that she didn’t seem to care. No, she didn’t ever want to go to the hospital again. No, she didn’t want to be put on life support. That Doctor was nice, she said, but so young!
I assumed that she would die quickly. Hospice, from what I had heard, usually lasted a few days. She has lasted a year and a half, eventually running out the clock on Medicare and “graduating” from her first hospice stint (that’s the literal term they use.) Of course, she just didn’t die quickly enough for them. It’s a funny conversation you have with the nurse; they push you into saying things they can write down to keep the Medicare money flowing.
“So, is your mother eating less? Yes?”
“Uhhh… yes, much less.”
“Good, good.”
She only remained a graduate for about a month. She went back into hospice almost exactly a year after she started the first one.
The waiting is the hardest part, to quote Tom Petty. When I call my father to ask how she is, it’s some variation of “she’s sleeping more” or “same.” There have been no dramatic events since she permanently moved into bed. Her routine is sleep, get her diaper changed (which she can’t feel, and has lost all embarrassment over), and be fed.
For a while, the newspaper was still delivered, until it became clear that she would only hold it as a kind of literacy totem. Television went from talk shows (Dr. Phil) to old movies to World War Two documentaries, played on repeat, sometimes in Spanish (she doesn’t speak Spanish), to nothing at all. Now, she speaks a few words a day “hello”, “yes”, “no”, all in response to questions if at all.
The decline is peaceful in a way. She doesn’t seem to be in pain. The hospice nurse has told us that signs of pain include grimacing, furrowing of the brow, sweating, and moaning. We think that her nerves are so shot that she can’t feel the pain of the bedsore that is currently eating into her bones. That is what will kill her, the nurse says.
So now, we wait. Hours, days, weeks, or months. Certainly not years. That is what we know. That is all we know. I am the family correspondent. We communicate on various group chats. The level of detail in the group chat is based on trust and intimacy. The one with my wife is brutal. The one with my brother and his wife is very direct. The one with my kids is sugar-coated. You get to be a very good propagandist.
VII.
The past four years have aged me and aged my marriage. I felt like a young man before all of this started; I now feel like an old man. Some of this is that I am older. I am now almost 50. Part of it has been watching my mother die and my father helplessly watch her die. You cannot understand the end of life until you see it happen. It accelerates time, while it relentlessly drags on.
My wife is a saint, and will not simply stand by and let this play out. She is always at their apartment, cleaning dishes, dealing with pantry moth infestations, attempting to reorganize and throw away my father’s endless trinkets purchased from Amazon, and most recently, cleaning my mother’s hands, feeding her, and washing her face. Ultimately, though, these acts withdraw equity from our marriage that I don’t know we will ever get back. Perhaps when she is gone, we will have some peace and can refill our tank of goodwill. Even writing this makes me feel guilty.
Modern society does its best to insulate everyone from death. Death is an abstract concept for most, and we have all collectively held hands and decided to whistle past it until the very end. We spend vast quantities of money warehousing the old away from the young; more and more I think that luxury assisted living is really for the children, not for the elderly. The granite countertops, stainless steel appliances, and lobby fireplaces are there so that you can feel good when you get in your car to drive away.
Ultimately, though, we can only hide the dying for so long. At some point, someone has to change the diaper, debride the wound, feed the mouth, and clean under the nails. I am amazed that some people seem to be able to do this every day and remain happy. It’s not fun for them, but it provides them meaning. Someone told me that the reason that all of the nurses and caregivers at care homes are Africans is that certain countries have built nursing schools specifically to staff the American aging industry. That me be true, but there also seems to be some deep cultural well of beneficence my mothers’ caregivers are drawing on that I personally cannot imagine here in the United States.
I wish I could say that this process has brought me peace or made me happier—even in the long run. It has not; it has deadened my nerves, made me cynical, and made me feel guilty for wanting God to take my mother. I imagine that the African nurses and caregivers who we pay to care for the woman who raised me judge me every time I ask them why they are waking her to feed her; I do not have their fortitude. I suppose that what the last four years has done is to make me understand the limits of self-deception. At some point, all of the trappings of modern life—the marketing and the furniture and the travel—fall away, and pain and suffering is met with mercy and compassion in a final act, and I am not up to the task. This knowledge, for me, has been sobering, but not transcendent.
Afterword: I wrote this a year ago, in the Spring of 2024. My mother passed in June, the morning after Joe Biden’s disastrous debate performance (this is how I remember the date.) I have reread this essay many times since and it still feels very true. I miss my mother very much—even though she was not “there” for the last few years of life, my brain acknowledged something had changed after she died. I dream about her often, and in a small mercy, I now dream of her as she was before she had dementia.
