Where Hilbert Turns into Edgewater

I submitted the following memoir to the 2023 Hal Prize contest, in the nonfiction category. It did not win.

Alzheimer’s starts in the hippocampus, the center for short-term memory in the brain. The neurons connecting the hippocampus with the rest of the brain degrade, gummed up by beta amyloid plaques and neurofibrillary tangles. What you had for breakfast, the day of the week, which friend stopped by—these short-term memories can’t make the journey to long-term memory. Soon they leave the hippocampus, and your brain, forever.

From there, the disease is a cascade of decline. For the uninitiated, it’s funny at first. Grandpa Chuck keeps asking if you’re married or have a good job. It’s important to him that his children and grandchildren are doing well in life. That sticks with him. But he doesn’t remember that he just asked that question. And he doesn’t know if he played Thirty-One this afternoon. He doesn’t know what day it is, or even the year. When his children razz him, he asks if they’re going to be snarly all day. Everyone laughs. But eventually the laughter fades as the family slowly realizes the severity of the disease.

My grandpa had the support and love of my grandma Marianne, his wife of 66 years. He started forgetting things when they moved from the house they raised five kids in to one a few blocks down—where Hilbert turns into Edgewater—on the river. Working in tile all his life, he forgot how to tile the basement bathroom in the new house. He got mad when Grandma had to show him. Not at her, but at himself. There’s no way my grandpa would have lasted the sixteen years he did with the disease without my grandma. Our family was fortunate to have her there. She weathered the worst of it for all of us.

After one fall too many, the dream house on the river became too much for my grandparents. They moved into the new independent senior apartments a mile away. Grandpa Chuck didn’t last long in that two-bedroom apartment with my grandma. After a few months, he moved to the attached memory care. His room had a window that looked out onto the courtyard. My grandma’s balcony also looked into the courtyard. Across the way was his window in memory care. She continued to keep an eye on him.

Grandpa Chuck had a roommate in the memory care, Michael, who was younger and more with it than grandpa. Michael would call for the aides when my grandpa fell out of bed or had an accident. He made a lot of calls.

I’ve always loved my grandparents. They set the example of a marriage based on unconditional love and respect, and nurtured a spirit of togetherness for our family throughout my entire life. My favorite memories as a child were going to the major holidays at their house—Thanksgiving, Christmas, and Easter. My grandparents had five children who made it to adulthood and twelve grandchildren. Their small houses on Hilbert and Edgewater were packed every twenty-fifth of December. Those Christmases were the reason I wanted a house big enough to fit my thirty-plus relatives each holiday. The year my grandparents moved into the senior apartments was the same year my wife and I bought our house. We continued the family tradition of the big Thanksgiving and Christmas at our house. Grandpa Chuck came those first two years.

I would visit my grandpa from time to time at the memory care with my grandma. We would sit in a small common room with a gas fireplace. My grandpa was always cold, so we always had the fireplace on. Grandma and I would talk. Grandpa mostly sat there, his head slumped over. They still held each other’s hands. Occasionally, Grandpa would ask if I had a good job or was married. But mostly he was quiet.

The last time I saw my grandpa in memory care was days before he fell that final time. On December 22, three-and-a-half years ago, he went to the hospital in an ambulance and never came home. He was 89 years old, a month away from 90. He made it seven days in the hospital and hospice. I remember the night he died. A group of us were at the hospice, gathered around his bed. He was in and out of consciousness, saying he wanted to go home. My grandma sat by his side, as she had for 66 years. I walked up to my grandpa at one point and held his hand. He opened his eyes and looked directly at me. His eyes were gray and vacant. I won’t forget that look. We all left and eight hours later I got the call.

For our family, Grandpa Chuck was our first experience with Alzheimer’s, but it wasn’t our last. My mom, Jennifer, had been suffering with Alzheimer’s for ten months when we buried Grandpa Chuck that snowy day in January 2020. This time we knew nothing about the disease was funny. There were no jokes when my mom got checks returned in the mail because she made them out to herself and wrote the payee’s name where her signature should be. Or when she left wet cat food out for days. Or when she bought three Amazon Fire tablets because they were a good deal.

My mom lived alone. She divorced my dad ten years prior. She had been engaged afterward, but that ended in heartbreak. She lived in a condo with her cats, Max and Mattie. My uncle Mike came up to me at one of those Thanksgivings at our house and said, “We have to talk about your mom.” He told me about the checks. That was the first sign. Uncle Mike, usually the first to crack a joke about my grandpa repeating himself, was not joking this time.

My grandma and I took my mom to Saint Luke’s for an evaluation. It was a bleak late-February afternoon in 2019. The diagnosis was clear: my mom was condemned to the same fate as my grandpa. It runs in the family.

My mom’s trajectory was more brutal and condensed than my grandpa’s. We buried my mom this summer. From diagnosis to death, she lasted a little less than four-and-a-half years. My grandpa suffered for sixteen.

Having seen what my grandpa went through, my mom was understandably upset. Some might say she was depressed, but I don’t think she was. She was clear eyed. She’d talk about how she wished she could just blow her brains out. I didn’t blame her. She knew what her life would be like from then on. My grandpa had my grandma. My mom had her two cats.

In March 2019, my mom got into a small fender bender. It had snowed that day, and it was unclear from her story who was at fault—but I could guess. One evening in May I stopped by her condo. She planned to walk to the Domino’s nearby and get her favorite pizza: sausage, bacon, and roasted red peppers. I went home and took a walk with my wife, Angie. As we enjoyed our walk through downtown Cedarburg, my phone rang. It was Uncle Mike. My mom had been in a car accident. She was right down the road from where we were walking. I ran over to the scene to see her Ford Escape upside down on the cramped Cedarburg street. She hadn’t gone to Domino’s, she drove to Piggly Wiggly instead. As I ran up, my mom was already in the ambulance. The paramedics said she was okay. She had hit a parked car. My wife had ran home and got the car. On the way to the hospital, Angie said it was time for my mom to stop driving. We didn’t have to debate it, the doctor said the same thing at the hospital. Legally, she couldn’t drive anymore. The disease had progressed extraordinarily in the three months since her diagnosis.

Realizing what lie ahead, my mom decided to sell her condo and move into the same senior apartments where my grandparents lived, one floor below my grandma. She was 61. One of her cats had died before she moved. Now it was my mom and Mattie, alone in a one-bedroom apartment with a TV she didn’t know how to operate and neighbors all at least fifteen years older.

There are no good times with Alzheimer’s, no matter what people tell you. Having read plenty of caregiver memoirs, the authors often talk about how they can still see the person they love here and there peeking through the disease. However briefly, their loved one will still find happiness. I’ve always found those accounts romantic. The memoirs read as someone clinging to the person and life they once knew. They don’t accept the reality that even if their loved one smiles, Alzheimer’s is always there, hanging over every moment like a morning fog over a pond in autumn. There is no going back. Each day your loved one loses a little more of who they were.

Like my grandpa, with each transition to a new place my mom got dramatically worse. It didn’t help that after nine months in the new apartment, the pandemic came and threw everyone’s life into disarray. Since the independent senior apartments were in the same building as a skilled nursing facility and a memory care, the administration locked down the whole place for over a month. It was a harsh month for everyone there, but especially for my mom and others like her. They asked residents to stay in their rooms. The staff delivered meals and care packages dropped off by family. My mom didn’t understand, and wandered the halls wondering where everyone was, mad when told to stay inside her four small walls.

With the help of the local Aging and Disabilities Resource Center, my mom received grant money to have a family friend come in a few times a week for a few hours to care for her. Up to that point, my grandma had handled most of the caretaking, as she had for my grandpa. But she was 87 now and had dealt with this disease for sixteen years already. She needed a break. We all did. But there are no real breaks with Alzheimer’s. The demands on your time and sanity only increase as the disease progresses. Even during the times you’re supposed to be relaxing, you inevitably wonder what your loved one is doing and when the next phone call will come. I was grateful for the outside help, but I knew it was only a stopgap. My mom could no longer live “independently.”

My aunt Linda and I found a group home not far from the senior apartments. The best in the area. My mom could afford it—for now—thanks to an annuity and the alimony she still received from my dad. But that money would run out and she’d end up on Family Care, just like Grandpa Chuck.

Another transition, another drop off a cliff.

My mom spent the last two years of her life in the group home. She was happy to go at first. Her aunt Katie lived there, with the same condition. But Aunt Katie was 90, my mom was now 63. Soon my mom realized what it was: a prison she’d die in. She’d constantly try to get out, but the doors were locked and alarmed.

The staff adored my mom. As she had her entire life, my mom made fast friends thanks to her smile. She liked to dance and joke around, as best she could. Her Alzheimer’s gave her aphasia—the inability to talk coherently—early in the course of the disease. She was slowly declining for months, but then the falls started. One here and one there. Soon the falls were a regular occurrence, always early in the morning. Like most people with Alzheimer’s, she didn’t sleep well. She’d get up early—if she slept at all—when there was still the skeleton staff of third shift. The aides couldn’t keep an eye on her all the time. She’d fall, and I’d get a phone call at 4:30 a.m. The ambulance was on its way, and I would meet her at the ER. That happened four times in a month and a half last winter.

In April of this year, my mom turned 65. By some cruel quirk, she became eligible for Medicare in March due to her disability. By March 15, I enrolled her in hospice. I would have done it sooner, but that’s how healthcare works in this country. I was optimistic. She would be getting the extra attention and care she needed. Hospice would work out her medications and stabilize her. And they did, for a while. A very short while.

She kept losing weight and falling. She’d fall multiple times a day. It became routine. I’d have mini panic attacks whenever my phone rang. Another fall. Was this the big one—the last one?

One Monday morning this summer, the hospice nurse called to give an update. My mom had not been doing well the prior few weeks. We were already talking about “comfort care” and “terminal restlessness.” Two terms I didn’t expect to learn at 35. As we talked, the nurse casually said, “and of course you know about the seizure.” I did not. Hours after I had visited my mom the day before, she had a seizure in her sleep. It was the beginning of the end I already knew was here but didn’t want to admit.

My mom never got out of bed after that day. She suffered for two more weeks, in extreme pain the whole time. Even with morphine, the aides could barely move her without her shrieking out. She was conscious at first, eating pudding and apple sauce. She would mumble about wanting to go home, just like Grandpa. But eventually, she just slept. Occasionally she’d open her eyes, mostly in pain. I remember the last time she was awake, two days before she died. At her bedside, I said “hello.” She turned to me and opened her eyes and gave me a big smile. Then she closed her eyes. The next—and final—time I saw her eyes open, she was having a death rattle. That’s an actual thing—it’s not made up. And it’s not something anyone needs to see, especially not from their mother.

Ever since my mom’s diagnosis and rapid decline, I’ve spent an unhealthy amount of time researching Alzheimer’s. I try to find patterns in my grandpa’s and my mom’s lives. What did they do or not do that caused their Alzheimer’s? Following the best science on the disease, I’ve made many adjustments: how I eat, exercise, drink, sleep, relax, think, work—even how I care for my teeth. I am trying to give myself the best chance I can to avoid or delay this horrible disease. While it isn’t always genetic, having a family history greatly increases your odds. What keeps me up at night is wondering if what I’m doing will have an impact—whether anything matters—or whether I’m consigned to the same cruel fate as my grandpa and mom. A fate of a life of family, friends, love, happiness—of memories all torn away piece by piece. A fate where I die a thousand deaths before my body finally—mercifully—gives out. I’ve lived through that fate twice already. I won’t live through it a third time.

Alzheimer’s starts in the hippocampus, and it ends in a hospice bed—alone. Because you want to die alone, with no one watching. Family and friends have been by your side for two weeks. You wait until they’ve all left. Then, just hours later, in the middle of the night, it happens.