I have an almost morbid fascination with the progression of my mother’s dementia. Perhaps looking at it analytically separates me slightly from the pain. It was worse for her a year ago… Then the worst thing she had to endure was the fear that she was losing her mind. There were severe anxiety attacks when she realized how confused and messy her mind was becoming; when, in her quieter, clearer moments she understood what was happening to her and all that she would lose. It was the stuff of nightmares, the thing most of us dread most, the certain knowledge that your mind and your life are falling apart. And I felt those emotions with her, but as painful as that was, it wasn’t me it was happening to.
Now her mind is all but gone, and with it most of the fear. She still becomes agitated if she can’t remember where she is, or has forgotten most of the vocabulary she needs to explain how she is feeling. But mostly she is like a child, accepting each new thing, real or imaginary, without judgement or complaint. She lives in a fantasy world where childhood memories, dreams and sometimes nightmares, merge smoothly into the actual world around her. She might make sense for a few seconds and then is lost again in another reality.
But she hasn’t lost her mind. It’s all still there, it’s just very mixed up. What she has forgotten today she may remember tomorrow… What she knows today may vanish into her untidy mind for a week or a month… But it will show up again unexpectedly and out of context in a dream or half coherent conversation.
A bigger problem is the dementia is starting to encroach on her unconscious mind too. Her automatic responses are becoming less automatic. She forgets to get dressed (or how to dress), she forgets how to eat and she is forgetting to drink. She is becoming incontinent but still retains enough personal pride to be pained and embarrassed by it.
I stopped screaming at the universe a long time ago. And I rarely cry myself to sleep at night anymore. I don’t know if my heart has become hardened or if it is just a natural process of acceptance. A year ago I was busy caring for her, now she is in a home and I am no longer the nurse. It is a strange transition. I am still and always will be her daughter though.
My job now is to do the boring and bureaucratic things. First off I organize her finances, and that means I am going to have to sell her house… Our house. The place where I grew up. I am packing our memories into boxes and deciding which ones I can keep and which ones must be thrown away. Mum’s house is now as messy as her mind. I carry things around from one place to another without really knowing what to do with any of them. And sometimes I just want to sit here and escape. I take my lap-top to my old bedroom, inhaling the smells of my own past as I write and surf the internet in privacy. I can smoke here too, indoors , without asking anyone’s permission. Or I can curl up on my old bed and sleep… But not for long… Not for long…
The decisions I have been putting off are just round the corner. I am calling friends to arrange transport, cleaning and painting. Soon there will be a few days of hyper activity during which I think I will be unusually quiet. Then the house will be empty apart from the ghosts and me. And there will come a moment when I close the door behind me for the last time.
At first there was some concern that my mother’s early onset dementia might be genetic. (Some concern = I was terrified). I have since been reassured that this is not the case. Part of the reason for my mother’s illness was a series of minor strokes which were themselves caused by pre-exiting illness and medications. But since my mother had a stroke my doctor warned me I might have a slightly raised chance of that happening one day. “So,” she warned me sternly “Of course you should watch what you eat and you shouldn’t smoke.” Hmm…
The way I see it though, I want to live as fully as possible and do, see and experience all that I can as long as I can. If my Gods grant me a long life, that will be a bonus.
Occasionally there are still moments of clarity when I can really be with my Mum. There is too much I want to tell her or ask her in those moments to fit into the seconds they last; but it is enough just to be there. Sometimes seconds are more valuable than years.