My mother-in-law lost a lot to dementia. I gained a friend.
By Linda F. Willing
It started with a lost birthday cake.
Our extended family had gathered at my husband’s childhood home in Michigan in July. My youngest niece happened to be celebrating her birthday, so we got her a special ice cream cake and hid it in the basement freezer.
Around dinner time, my sister-in-law and I went down to retrieve the cake. It wasn’t there. We checked in the freezer upstairs. Nothing. We emptied the downstairs freezer. We questioned everyone. We started searching in larger concentric circles—the refrigerator, the rest of the kitchen, the cabinets—until finally we were reduced to searching crazy places, like car trunks. But still no cake.
In the end, we discovered it behind a pile of laundry in the basement. Of course it was ruined by then. There was little question that my mother-in-law, Bo, was the culprit. She’d always run the household with unquestioned authority. But she seemed as baffled as the rest of us.
Then two months later, Bo got lost when driving home. She was traveling a route she had driven hundreds of times before, but she failed to make a turn and ended up going ten miles further before pulling over into a restaurant parking lot. She was panicked and distraught. Kind strangers at the restaurant helped her call home.
That was the last time she ever drove. At that point she saw a doctor, and the first stages of dementia were diagnosed.
She was angry and incredulous. She cried with frustration. She questioned why this fate had befallen her.
The onset of dementia brought with it anguish and fear for those of us who cared about Bo. My husband and his sisters dreaded the possibility that their mother might forget who they were, and who she had been for them for so many years. The family had already dealt with recent loss—my husband’s older brother had died tragically just prior to his mother’s decline. Would she forget that George was gone? Would she have to relive the pain of experiencing his death over and over for the rest of her life? Would we all have to stop talking about George when around her, for fear of triggering this reaction?
Yet it turned out that our fears in this area were unfounded. If anything, Bo’s dementia insulated her from constantly agonizing over George’s death, as she had done. Most of the time she didn’t seem to think of him at all, but when reminded, hearing of his loss was not a shock. “George is gone?” she would say, as if hearing a familiar voice from far away, reminding her. “How long has he been gone?” When we told her, she would pause a moment, then say, “He was so young.” And then, in the next instant, the conversation would have been forgotten.
This became the new reality of Bo’s life. The recent past, fraught with seeds of regret and anxiety, simply ceased to exist. Likewise, the concept of future had no meaning to her at all. There was no need now to plan or worry as she had always done in her younger years.
It was difficult for her children, for whom the past defined their relationship with their mother. But for me it was quite different. I had never known the Bo of my husband’s youth, so the changes dementia brought to her created an unexpected opportunity: It was as if we had just met for the first time.
Though my mother-in-law had always been nice to me, I’d never felt she really had much time for me. Bo had always been busy. She’d continued working outside the home into her 70s, and had been in charge of cooking meals and cleaning house. But now she had been released from many of those obligations, and time took on a new meaning for her. Suddenly she had enough of it for me—and being with me seemed like a kind of relief to her. I was someone who had no expectations of her, no set image that needed to be fulfilled.
Dementia brings about terrible losses, but it can be a spacious kind of disability as well. Bo lost a lot. The ability to read, for example—because she could not remember what she read from one page to the next. Movies, which she had always enjoyed, were another loss. But music became more resonant and central in her life. There is no plot to music. She could just live in the moment with it, enjoying melodies and harmonies in all their immediacy and freshness.
This living in the moment became the essence of my relationship with Bo. One afternoon we sat together on the back patio talking about what our favorite girls’ names were. Did we prefer the ie ending of names like Debbie, or the more formal Deborah? What about gender-neutral names like Taylor and Morgan? Were biblical names like Sarah and Ruth dignified or old-fashioned? We found we could talk about anything that wasn’t temporal in its basis. What was our favorite meal each day and why? If we could only have one dress, what color would it be? Did we prefer sunrise or sunset?
Another point of connection between us was my dog Joey. Bo had always been fanatical about keeping a spotless home, and therefore had little interest in pets. But once her need for perfection fell away, there was space for Joey to move in. Although they had known one another for years, they suddenly fell in love, and Bo welcomed Joey at her side, sneaking her forbidden bits of cake.
Memory mostly existed in the distant past. My mother-in-law could no longer read books the way she once had, but she could still read letters from a cousin written in Greek, which she had learned as a young girl. She no longer planned and cooked meals, but she savored food and enjoyed a glass of wine with dinner.
She had dyed her hair for years, a kind of copper-red color, but with her changed cognition such vanity was no longer possible. Her hair came in natural and white. It was beautiful, but it startled her at first. But then her sense of humor, which resided well below the mental layers corrupted by dementia, kicked in. She would pass a mirror and joke, “Who is that old white-haired lady?”
In the later years, she went into a nursing home, where she had her own room with a view of the courtyard, and her comfortable chair, and her music. On our last visit, we sat in the courtyard and she lifted her face gratefully to the warm sun. Later we pushed her wheelchair down to an ice cream shop. She only had a couple bites, but it was enough.
On her last day, my sister-in-law told us that she was in her room and asked to listen to a favorite piece of music. Before it ended, she simply stopped.
Dementia is loss, but in some cases, something unexpected might also be found. My relationship with my mother-in-law was a gift that I don’t think could have happened apart from her disability. I will cherish it forever.
Linda Willing C’76 is a former urban firefighter, and the author of On the Line: Women Firefighters Tell Their Stories.