Aging in Place

The COVID Granny Diaries

There is no room left on my face for another age spot. Wrinkles have whispered their way across my face, my arms, and my hands, leaving marks that were not there before. Twelve months have gone by and my body shows the damage.

A year is a long time in the life of an older person. You mark its passage differently, noticing for instance that when summer ends, there may not be many more of them. COVID has robbed many older people of precious time, a year they were going to squeeze to the last drop. And now it is gone.

Caitlin tells me that, medically speaking, I am not “old” because I’m still in my 60s. “Mom,” she says with that I-am-the-authority-now voice, “we don’t call people ‘old’ anymore until they reach their 80s.” And, yes, I am much younger than my grandmother was at this age.

I am not younger than my mother was, though. She was downhill skiing right through her 70s. That’s why it was so awful to see her go down hard: in 2012, her memory began to drain like sand through your fingers and, with it, any shred of the person she had become. The last of her has disappeared while she was isolated in a nursing home under COVID.

Dementia ruined the happy truce I had enjoyed with my mother for more than thirty years.

Mother and I had a rough go right from my infancy. My parents married too young and for the wrong reasons: He wanted to have sex with her and couldn’t get it any other way (those were different times). She was on strict orders from her parents to marry decent money and he was going to be a doctor. I do not presuppose those motivations; that’s what they each said to me.

My parents' wedding in 1951. I did not know until she was in a nursing home how much she had wanted a career instead.

Even when she was about to be married, nobody had ever told my mother about sex. (Like I said, different times.) So, when my father wanted to “do those things,” she was horrified and humiliated. They married in July 1951 and I was born in August 1952. Mother was mortified that “everyone would know the things we had been doing.”

So, Shirley, my mother, was not particularly happy about being pregnant and resented it that my dad was delighted. (“It was a macho thing with him. My being pregnant proved to everyone he could do it.”) I can still remember how she looked, standing in the kitchen when I was in my twenties, when she told me she would have aborted me “if we had that back then.” Fairly often, she has said in my presence that I have always been my father’s child. She never meant it as a compliment.

Fabulously talented with fabrics, Shirley had wanted to be a costume designer for theater. When she was away for a first college year at Stephens (as young Texas ladies did in those days), she wrote home to tell my grandparents about her aspirations. A steaming letter from my grandmother came back telling her they were not spending all that money for her to waste it on a career. She was to come back the next year to the University of Texas and find a husband. And that was that. I did not know until recently that Shirley had harbored anger about that incident as late as the 2000s, when she told my daughter Liza (who now does costumes for theater) about it.

My father went to Yale Medical School (where my daughter Caitlin is a resident now) and, of course, Shirley went with him. The Northeast seemed wholly foreign to Texans at the time and neither of them had ever been far from home. Since there were no friends or family nearby, Shirley was stuck for the first two years of my life in a basement apartment in New Haven all alone. She hardly ever saw my father, because that’s how medical school is. You can imagine the dark emotional soup the two of us lived in.

My sister came along when I was two and they at least moved into a second-floor place with light and a friendly older couple downstairs. When my dad went to St. Louis for his internship, Shirley once again was in a strange place with no friends. She has told me how hard it was, being there day after day with two small children and not even having a car to get out and about. After they moved back to Texas for Daddy’s residency, there was a brief hiatus before my brother and younger sister showed up. I remember my father telling me Mother was pregnant with my youngest sibling. I looked past Daddy and saw her still lying in bed; it seemed like she had been crying. I was eight. I didn’t understand.

The four of us had a mother who was grouchy as all get out. My father was distant, but short-tempered. Both my parents were quick to “spank” us. Their anger at everything else, especially each other, would sometimes take control and those spankings would become beatings. Indeed, those were different times, but the memories are still vivid and painful.

I came to resent her early. I lashed out and “talked back.” By the time I was a teenager, we were pretty alienated. We fought a lot during those years. My mother was an extremely beautiful, graceful, and socially adept woman. I was a painfully unattractive, gawky, introverted, clumsy teenager. She was disappointed in me and let me see it.

My father treated her as if she were an idiot. I thoroughly identified with him, so I decided she was stupid, too, and let her see that.

When I was a junior in college, she told me in the tearoom at Neiman-Marcus that a doctor who lived around the corner from us had fallen in love with her and wanted to marry her. Her face showed plainly that she expected me to be thrilled for her. That’s another moment burned in my memory. I hated her for that.

We were estranged for a few years over her divorce from my father. Then, somehow, we began to make amends. I don’t remember what precipitated that, but we were reconciled by the time I became pregnant with Caitlin.

Mother’s second husband left her for another woman (proof that Karma is real) just after mine left me for the same reason (also proof but that’s another story). In the next stage of our lives, my mother and I spent a lot of time together and hours on the phone. We talked about lots of things, large and small. We took trips together. In the divorce, she got a beautiful home in Aspen. I would go and spend weeks there.

Shirley had always been an athlete. She was also born sociable (in my mean teenager stage, I would say she was "just entirely too friendly"). She was able to build a wonderful life for herself in Aspen, even though she was already in her 60s. Her friends were mostly my age. They all hiked and skied together. She joined a huge ecumenical Christian church, where she ran the bookstore and they loved her.

In fact, the thing I appreciated most about those times—and what I will remember most when she is gone—were the talks about spirituality. The life of the spirit is something that is very important to me, but I had rejected the evangelical Christianity of my childhood—with a vengeance. My mother never gave up Christianity, but what she did with it was beautiful.

All those years I thought Mother was stupid. In fact, she was a scholar. She read deeply and widely in Christian philosophy and other religions as well. She went to all kinds of spiritual retreats, had impressive spiritual mentors, and even eventually earned a certificate of some sort in theology. She never abandoned her original faith, but she questioned it and loved to debate it.

It was Mother who introduced me to the work of Elaine Pagels and the whole feminist question of the church’s treatment of Mary Magdalene. She also gave me a copy of The Gospel of Thomas (which was completely over my head, but she had read every word), explained it to me, and told me why the Gnostic Gospels were important.

Under the influence of my mother, I began to craft a more individualized set of beliefs and practices, independent of the Christian tradition, but building on it. I experimented widely and shared with her stuff I was learning as I sampled all kinds of religious traditions, including Wicca and paganism. We turned over the pros and cons of all these ways of belief in our heads, comparing them, distilling what we liked about them and carrying those things with us.

She was important in my development as a spirit and as a person. And as a woman.

When her memory began to go, it went in little trickles at first. Then, suddenly, in 2012, it began to gush out. We moved her into a place called Querencia, in Austin where she grew up, in part because we knew she could have care there to the end of her life, even if she lost her memory entirely, and in part because a bunch of her high school friends were there already.

But Mother resented being moved to Querencia. She could not remember the reasons for making the decision from one moment to the next, so she decided we were just bad children. (BTW, that happens often.) As the dementia grew, she became more and more angry at us. I made a point of coming to see her five times during each of the first two years, even though I lived in the UK, but she couldn’t remember I had been there, so I would spend every visit listening to her berate me for never coming to see her. She was always pissed off. It was too familiar.

My mother when she was at Stephens in 1950. She married a year later. No one had told her about sex before her wedding night.

Dementia is like that; people’s selves roll backward as their memories go. The loving face of my spiritual companion dissolved and in her place was the shrew of my childhood. Had that bitch been there all along? We all saw it: my sister Kathy said “Dark Shirley” was back. And she sure was.

I was horrified at what was happening to her. The person she had become, the spirit she had so carefully cultivated, was spilling out of her with her memories. I wanted to catch them, to save the part that was her. Even though I understood the causes, however, I also felt betrayed. And the little girl who still lives in me was furious and fearful.

Since about 2015, I have more or less ignored my mother. I couldn’t deal with it. I sent her gifts, called her on her birthday, went to Austin once a year. The minimum. And I did that knowing that when she passed, I would feel terrible about it.

By the time the coronavirus hit, Mother could no longer follow the news or use a computer; she had practically lost her hearing and could not cope with hearing aids. When Querencia locked down, we lost sight of her. Without an advocate inside to help her call us or use the Grandpad we gave her, she could not reach out. Because she couldn’t hear the phone, we could not reach in. The people who were staffing her wing of the residence were next to impossible to contact.

I set up an iPad and sent it down there, then fought like hell to get them to help her take FaceTime calls from us. We had very little success. I think Querencia is a very good place, but all such residences had trouble maintaining care during those first few months. I fear that my mother spent that time in her apartment, alone, deteriorating. And we could not even have eyes on her.

Then one night she fell. They found her on the floor, unconscious, and sent her to the ER, where my sister Kathy was able to see her for the first time in six months. Her brain was damaged. She survived but spent nearly a month recovering in the nursing center of Querencia, where she had constant care and observation. We were able, at last, to talk to her on the iPad. I arranged for someone to call her every day.

Now her deterioration was there for all to see. It was plain as day that my mother could no longer live alone or care for herself. She now had no anger left in her, but also no laughter or interests. Does she feel love anymore? Honestly, I don’t know. Does she think about God anymore? I doubt it.

For me and my sisters, it was defeat when she had to be moved to the memory unit. We had made a pact that we were going to try to keep her out of there if we could. Have you ever been to one of those places? No matter how nice the residence may be, a memory unit has a One Flew Over the Cuckoo’s Nest quality about it. But now it was clear that we had done her no favors by waiting too long.

As Kathy orchestrated Mother’s move from her assisted living apartment to her tiny room in the memory unit, she learned that the whole community was moving because the residents were advancing earlier than they would normally do from one stage of old age to the next. All those people were deteriorating because of the isolation from the lockdown. And it showed up in the turnover of the apartments.

Mother had not been in the memory unit 24 hours when they discovered that one of the 19 residents had COVID. People in memory units are managed as a group, kept together a good bit of the time, not just because it’s easier and safer to take care of them that way, but because the patients themselves need to avoid isolation. That meant that Mother had certainly been exposed. Querencia, doing the right thing completely, put all the patients in their rooms and assigned one staff member to each. They began testing and testing and testing, never letting anyone leave their own room. This went on for almost two months.

We were notified immediately and told we needed to make a decision right then about her care if she got COVID. That’s because once a person like my mother—very old, frail, with dementia—gets moderate to severe symptoms, they go down in a matter of hours. The staff needed to know whether to send her to the hospital or let her die. Because Querencia is part of a larger national system, they could tell us what the probabilities were. Already four people in the unit had been identified as infected; Mother had an 80% chance of getting it, too. Beyond that she had about a 40% chance of getting severe symptoms. But once those symptoms emerged, she had only a one in three chance of surviving.

At first, our reaction was “well, of course, we would want her to go to the hospital.” But the Querencia staff cautioned us to think carefully about it.

Caitlin, who is an ER doctor and had seen way too many of these cases already, explained that, though we now know a lot more about how to treat COVID, the process was unlikely to be effective for my mother because of her age and frailty. For instance, they would not intubate her because the procedure itself would surely kill her. She also explained that the trauma of the experience would be severe, which for dementia patients usually means further memory loss.

You see, COVID patients often arrive in the ER delirious. They struggle against the ER staff and have to be given sedatives so that they can have all their vitals taken and the usual tubes put in. Dementia patients become much more confused and frightened, struggling all the more, and usually have to be strapped down to the bed. This makes everything worse. Caitlin said, “And of course it doesn’t help that all the people standing around the bed are wearing apocalyptic beekeeper outfits.” After all that, if Mother died (66% chance), she would be terrified and alone.

Caitlin advised me that, even if Mother got the one in three chance of surviving and went home from the hospital, she would never be the same. She would be seriously traumatized, lose significantly more memory, and—importantly—would almost certainly have permanent breathing issues from the COVID. When all was said and done, it did not seem like a good decision to send Mother to the hospital if she got severe symptoms.

After discussing it with the whole family by Zoom, my sisters and I decided to instruct Querencia to keep Mother if she got sick. She would probably die, but she would be in a place equipped for palliative and hospice care. She would be comfortable, in familiar surroundings, kept pain-free and without intrusions, and cared for by people in the same end-of-the-world outfits, but whose voices she might at least recognize.

Mother did not get COVID. They hunkered down for weeks, but then the vaccine was released, and they were in Phase 1. It was a relief when she got vaccinated and the threat was over. But this experience, along with the fall, brought it home to me that I might never see my mother again.

It was sad that we could not be with Mother for her 90th. And it was like doing remote surgery to get a little birthday party set up for her. But my sisters did yeoman's duty and here is her beautiful cake.

And then that horrible February storm hit Texas. People all over the state went for days without power or water. Once again, Querencia was locked down, this time with staff unable to come or go. The fear of power and water loss, of course, is even more urgent in a setting like this than in a private home. Luckily, the Q had backup preparations, never lost power, and they toughed it out. Can you imagine trying to get through a thing like that when you're in charge of a bunch of people who can’t even remember to go to the bathroom?

Perhaps the worst is over. Mother turned 90 this week. The Q staff took pictures of her with the cake and flowers we sent. She looked happy and we were pleased that they had given her a manicure and even painted her nails red. There was a time when that would have made a big difference to her. I don’t think she knows what color her fingernails are anymore—or cares— but it makes a difference to us. It tells us that Querencia is caring for her as a person. It reminds us of who she once was.

COVID has been an emotional roller-coaster for many reasons, for me as for you. This stretch with my mother has been one of the worst parts of my experience. As you can see, it’s not just that it was scary that she might get COVID. It was having all the other memories and mixed feelings coming together with this horrible powerlessness, of not being able to see and talk to her, of guilt, of recognizing how truly vulnerable she was, and of having to utterly trust others to care for her.

When my mother dies, all the past we share is going to come crashing over me, the anger, resentment, intimacy, violence, spirituality, meanness, kinship, betrayal, admiration, guidance, and criticism. I am going to remember, intensely, the closeness I had with her before she disappeared into forgetfulness and I am going to feel like I didn’t do enough, especially these past few years when I could not rise above my fear of Dark Shirley. It is too late to explain myself to her or to ask her forgiveness. I can only hope she will live long enough for me to see her one more time.

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