There are so many things to think about, to try to capture, in women's experience of dementia. It is an area in which I have been professionally involved for well over 20 years, but my personal experience, and the personal relationships I make through my work are where I find meaning about dementia, so in this piece I am going to share some thoughts about two of my close relatives.
I start with my grandmother, who died when I was twelve years old, in 1968. She had been widowed in the early 50s, and although she hadn't had a happy marriage, her single status meant that she was alone in the role of supporter of her three adult sons, and of members of her wider family, including her younger brother who remained single until his old age.
In the 60s my Gran's dementia journey appeared to be a brief one her moods and anger probably going unrecognised as a function of a specific disease, and ascribed to her character. People remarked on how negative she had become without wondering why. She lived alone, so nobody really had to tolerate her difficult behaviour for long. Only now can I see that this behaviour probably signified the early stages of whatever specific condition she had, or depression, or both.
My memories are hazy, but I remember her leaving the house at night and sitting on a neighbour's step in her nightdress. It seemed that suddenly she was admitted to Stanley Royd, the Victorian Asylum 20 miles and two bus rides away, which served our district. I have one vivid memory of my father visiting to find her lying in a high sided cot with soiled sheets, and, in my recollection, she died shortly after. There was no name then for what my Gran had, except madness. We are thankfully not still at this point, but there is further to go and it is these memories that underpin continuing social fear and stigma about dementia.
My Aunt Rose, a single woman for whom I was her closest relative, had vascular dementia in the early 1990s. Again, she lived alone and lurched from crisis to crisis as she had too few regular contacts to spot any changes in her behaviour.
The form Rose's dementia took was dangerous and funny. She would lean over the toaster, her hair dangling in the glowing bars. She put her money in tins full of paint and moved her furniture on to the lawn. She was angry at her Dad for moving in down the road and not visiting her and swore when she found he had been dead for 30 years. She went to entertain the old folks with her singing of Irish Rebel Songs, her voice like a foghorn.
Rose's friends, too far away to visit much, were shocked that I had not put her in a home, but she was as lucid as she was confused, and did not want that. She was an adult, independent and to me this meant more to her than safety, but I took a lot of criticism for my approach. I think of both of us as fortunate that she developed a terminal illness very quickly and died before she lost the ability to express her wishes. These days she might have made some kind of future directive, but it wasn't common then.
Yesterday I came away from a wonderful 24 hours spent with people with dementia, their supporters and people working to reframe our views about dementia. Despite the growing strength of the voices of people with dementia, and the wave of interest in and action on creating dementia friendly communities, we are still struggling with sensitive issues about personal risk, 'loss of self' and stigma and lack of awareness. A couple of times I highlighted my concerns about the isolation of single people with dementia. In the context of older women forming a larger group of single people than any other, you can see why this is such a professional concern for me as well as a personal one.
|Tags: family, women living alone, women with dementia||Written 2014-09-04|