Visiting my mother

A girl in an old woman's body

Over the last week, I’ve been visiting my 92 year old mother with dementia in her long term care home regularly. Her caregiver tested positive for the virus, so has had to stay home and isolate. I have noticed, mercifully, that Mom is being well taken care of by the regular staff there who are gentle, attentive, pleasant and appear to be happy. This in itself is a bit of a shock to me because the scourge of Covid has been so vicious.

And a shock because working in a long term care home is not for the faint of heart, even in the best of times. Indeed, visiting is not for the faint of heart. For me, having had a strained relationship with my mother through much of my life, it has been an emotional struggle. What has ended up happening is that I have not visited her with any regularity, letting the caregiver whom we pay have daily contact and provide the one-on-one attention that makes the difference between surviving and surviving with some increased level of human connection.

Some days my mother will have a conversation. The other day we spoke about age. She asked me how old I was. I’m not sure if she understands that I’m her daughter, but at that moment I think she did. I said, “Can you guess?” She shook her head so I replied, “Sixty-two.” She was visibly aghast (which does wonders for my own self-confidence and serves to push one of my many emotional buttons). I continued, “You will be ninety-three this year,” and “that means you were thirty years old when you had me.” She replied with a certain amount of incredulity, “I don’t feel that old.”

I forget that she is a girl in an old woman’s body. There are framed pictures in her room of her youthful self: several of her wedding day with my Dad, on the steps of the church after the ceremony and in their reception clothes, eyes bright, laughing. A more reserved studio portrait of them individually, facing each other in a folding frame, capturing their youthful resolve.

She is aware that her arthritic hands don’t allow for picking up things; her fingers are stiff and bent, and she is afraid to have her nails clipped — they are brittle and cutting them is torturous. When the food arrives, she says, “You’ll have to feed me.” I nod and tell her it would be my pleasure. I’m heartened when I see that her favourite, egg salad sandwich with no crusts, is on the menu for lunch that day. Her appetite kicks in and she finishes it all. This is a good day. Some days she will not even open her eyes, not speak and not open her mouth to take food. On those days I think to myself that she won’t live out the year.

But on good days, when she is animated and engaged, I wonder how long someone already with years worth of dementia can live. What the deterioration of her brain will look like. Then on other days, I see it. She settles on a word, a series of rhyming words, and repeats them, sometimes for hours: “Tip, top, tap…tap tap tap. Top. Tip. Tap….” There is no melody, no story. Just the familiarity of the sing-song sound. The comfort of the effort of singing. After long minutes of her doing this I say, “Mom, you can stop singing now” to which she responds, “I can?” and she does, taking a deep breath and laying her head back in her wheelchair. I can’t imagine what she is thinking as she goes into these “singing” loops, how she may feel that the function of doing it is keeping her in touch, grounded to some level of understanding, some control over her existence, or some simple reassurance doing a thing that she loved so much.

I often see other daughters with their mothers. We catch each others’ eyes and make invisible nods. I feel my smile is weak, my gaze invasive and once caught, guilty. But the woman I watch most frequently is sylph-like, she is full of grace from where I sit, me in my big boots with my hot breath steaming up my protective glasses. She, who must be around my age, in tight jeans and a flowing caftan over a fitted shirt, effortlessly pushes her mother down the hall in a huge wheelchair, more like a rolling bed-chair. Is this the equipment you get when your mother is no longer a candidate for a regular wheelchair, or do you have to make a special request for it? I ponder this and wonder if that time will come. I remember my Dad and his raincoat. Dad was almost 101 when he died three years ago now, but for years before that he’d respond to my suggestions of buying him new clothes, “the law of diminishing returns Als” he’d say …. that is, he wouldn’t live long enough to make new purchases worthwhile. I wonder if the same would be true with a bed-chair.

Dad died within 72 hours of the doctors telling him he had kidney failure. It seemed like an apt death; he chose not to pursue treatment, he knew what was going to kill him and he knew it would be soon. He never wanted to be a burden to his family. To this day I remember the contrast between he and Mom coming into my store. Mom would always ask for the “family discount” and Dad would correct her and say, “We’ll pay full price!” We’d laugh because we both knew that in the end they’d probably end up siphoning me extra money anyway.

On the other hand, Mom continues to live with a disease that is slowly and progressively killing her. She is not averse to being taken care of and would often say to me when I’d take her to doctor’s appointments, shopping or for an outing, “Ailsa, what would I do without you?” This always made me feel incredibly uncomfortable because it was true - although they believed they lived independently, the truth is they were far from it. One day I was returning from the grocery store with a cart overflowing with bags and saw a notice in their elevator that a resident had died. I knew the woman; we had sat with her on more than one occasion in the communal dining room and I recalled how she never seemed to have family visiting her but still was full of such positive spirit. I wondered about the details of her death, and whether she had been found alone, hours later. My mother’s only criticism of the dining room was that single women were often interlopers and would end up sitting with her and Dad. My father would make some effort to entertain them but Mom would always appear put out.

I brought Mom a pot of daffodils today and although they hadn’t yet opened, showed them to her. Her eyes briefly lit up and she said, “How lovely!” I asked her if they were her favourite and if she could tell me what colour they’d be, but her reply was, “tip top, tip, tip, top te top….”