Michael Weinstein during a visit with his stepdaughter Laura Meckler and her family on March 30 at the memory-care facility where he lives in Chevy Chase, Maryland. Photo / Matt McClain, The Washington Post
Dementia and grief have complicated my decades-long relationship with my stepfather. We visit a lot - and not enough.
He is usually slumped in his wheelchair, staring at the table in front of him. Sometimes he’s looking ahead, at the movie or variety show on the big-screen TV – typically something from the 1950s or ’60s, which I guess is what the folks running the memory-care unit think Michael and the other residents will find comforting. I often glance at the screen and say a silent prayer that the entertainment will be better if and when I need a place like this.
My husband and kids and I try to see Michael once a week, which, given our busy schedules and packed weekends, feels like a lot and also not nearly enough. With occasional exceptions, we are the only visitors he gets, so once a week feels like nothing. But visiting Michael is one of the hardest things we do. He barely speaks, giving short answers to easy questions like, “What’s my name” or “Where did you grow up?” but not a lot more. They say that it helps people with dementia to be reminded of their past, when their brains were healthy. Tap into long-term memories. But we can’t do that. Because there’s only one thing that Michael and I really share – my mother – and for him, talking about her is just too painful.
We aren’t very good at this and yet, we are what he has, so we try.
My mother fell deeply in love when I was in high school, and that love eventually carried her to Honolulu, where Michael, who would become her second husband, was a sociology professor at the University of Hawaii. Michael had moved to Honolulu after earning his PhD from Harvard and planned to stay for just a year or so. But he fell for the place and later, so did my mom. The year I finished college, she sold the house my sister and I had grown up in and moved to Hawaii to start a new life.
My mom was living thousands of miles away from me, but she was a committed user of the telephone, and we would talk at least once a week. Sometimes when I phoned her, Michael would answer. I liked Michael, a lot, and I’m pretty sure he liked me, too, but unlike my mom, he wasn’t much for the telephone. I’d say hello and ask how he was, and after a quick hello, his response was always the same: “I’ll get your mom!”
I travelled to Hawaii a half-dozen times over the years, and they came to the mainland every summer to see friends and family, so Michael and I had lots of time together. He was interested in politics and history, movies and journalism. I loved his stories about teaching sociology. When the department forced him to give a final exam, something he did not want to do, he acquiesced and went on to tell his students on Day 1 of each semester what the single question on the exam would be: “What did you learn in this class?”
But our main connection was always my mom, to whom he was devoted. Where do you want to go for dinner? His answer was always the same: “Wherever Marsha wants is fine with me.” And he meant it. Making my mom happy made Michael happy.
The two of them were perfectly matched. Both were frugal to the point of absurdity. (“Shall we save this open, partially used – but not all the way empty – packet of McDonald’s McNugget sauce?” Of course!) Costco was their happy place. She was a secular Jew and he was an active member of his conservative synagogue, but they both loved the kugel she’d bring to the annual potluck lunch, and they shared the same Jewish values of community and tikkun olam – repair the world.
Then, about a decade ago, my mom started to mention that she was worried about Michael, and my sister, Amy, and I started to realise that something wasn’t right. In 2015, we all went on vacation together to Jamaica, and Amy and I noticed he was gripped with anxiety about being able to find his hotel room at the resort. Once, around this time, while visiting us in Washington, they took our kids to McDonald’s for dinner and got lost driving back to our house. By 2017, my sister and I realised we needed to figure out what was going on. We travelled together to Honolulu to sort it out.
We could immediately see something was very wrong with Michael. He spent his days sitting in one place, not saying much of anything. He would tell us he was confused. We got him in to see a neurologist, who ran a cognitive test and diagnosed early Alzheimer’s disease. Amy and I started to talk to them – well, mostly to our mom – about making a plan for moving out of their condo, and eventually, she decided they would move to DC, where they could be near me, my husband and kids.
And so they arrived in November 2017 – first to an independent living apartment building, and then, as Michael’s condition worsened, to assisted living and later to a memory-care unit, or as the facility calls it, “Reminiscence”. Along the way, we learned he did not have Alzheimer’s but, more likely, Parkinson’s disease. But he certainly had dementia. And with the growing fogginess inside his head, his world began to shrink.
All those colleagues from the sociology department at the University of Hawaii, people he worked with for years? His neighbours in the condo building where he lived beginning in 1968? His friends from the synagogue that he faithfully attended every Saturday for decades, the shul he helped create and where he was a leader? It’s like they never existed.
And for a time all that mattered less. He had my mum. By the time the pandemic hit, she, too, was experiencing dementia. In early 2020, she moved in with him on to the Reminiscence floor. They had each other. Then one day in November 2020, I got a call from the front desk.
My mum had a fever. She was on the way to the hospital. Positive for Covid. Days of uncertainty, but it looked like she’d pull through. We wanted her back home, back with Michael. So after she was no longer contagious, she returned to Reminiscence. But she wasn’t better. A few days later, she died.
For months, because of the pandemic, I had barely seen Michael in person. Now, dressed in a hospital gown, mask and face shield, I knelt before his wheelchair, and I told him she was gone. And I think he understood because he started crying. But he didn’t speak.
And with that, he was alone.
And I understand, in a way, why the people from his life have disappeared. He can’t email and he can’t text and he certainly can’t talk on the phone, so maybe it’s just too hard. Maybe it’s easier to forget the people who leave, to imagine all is well.
Michael has one friend in driving distance. It’s a close friend from their childhood in Michigan, from Hebrew school, from college, a friend whom my mom and Michael saw on every visit to the mainland. A lifelong friend. But even he hasn’t been to see him since before the pandemic, since before my mom died. I wanted to understand why, so I called him for what was a hard conversation for us both.
He told me about how busy his life is, with many commitments. He told me how hard it is to travel to DC. He told me that he FaceTimes with Michael when Michael’s sister visits from Detroit. But the most profound thing he told me was about another close friend who also had dementia. The friend lived nearby, and he visited him often for two years before he died.
“It was among the hardest things I’ve ever done in my life. I’ve conducted funerals and those were easier to do,” he said. “It’s really hard to see people who you’ve known with the vibrancy of life having lost that. No matter how much you love them, it’s hard to be with them.”
He explained the very real logistical challenges of visiting. But as our call was coming to a close, I suggested that while the logistics were difficult, he would probably find a way if it wasn’t so hard to see Michael as he is today. “Yes,” he said. “I think that’s fair.”
I was thinking about all of this on a long walk last summer with one of my closest friends. I asked her, if I were in memory care and you lived in driving distance, would you come visit me? Of course, she said. But can any of us really know? Maybe seeing me in that situation will be too sad, too hard. But I do hope my friends will still be my friends, because I’m going to need a break from what will probably be “The Breakfast Club” and “Pretty in Pink” playing on a loop.
Michael’s sister and brother-in-law, who live in Detroit, do come to see him several times a year. And when Amy is in town, she does too. But most of the time, it’s just me, my husband and our kids, trying to make conversation with someone who does not speak.
The most obvious thing would be to connect through shared memories, but all our shared memories involve my mom, and whenever I mention her name, Michael gets visibly upset. That’s the last thing we want.
So we try to tell him what’s happening in our lives, and my husband updates him on Detroit sports. We often bring games to play together – though it’s really us playing and him watching. We might look through one of the photo books we brought here from Hawaii, big coffee table books with the gorgeous photos of his onetime home.
On the best visits, we tell jokes, and sometimes I’ll slip in a mention – “Oh, this was one of Mom’s favourites.” And sometimes he laughs along with us, and when he does – and even when he doesn’t – I’m so glad we are there.
It's perfect for a lazy lunch with friends.