Fading from Memory

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Tuesday 15 August 2006

The neural network

By MP on Tuesday 15 August 2006, 17:11 - Reference

With what appears to be my customary sense of self-importance I began this weblog last month thinking that it would be pretty unusual. I'd done a quick and, as it turns out, dirty search for personal journals of Alzheimer's experiences and found nothing. My journal about having two parents with the disease would, I confidently assumed, definitely be unique. I was quickly disabused of that foolish notion. In short order, I was introduced to (in order of seniority):

That weblogs devoted to similar material already existed, I should have guessed. But it was the further similarities of these weblogs that were more interesting. First, look at how many were started in March to July this year. Next, given the mean literacy standards of the blogosphere, the majority of these are unusually well crafted weblogs, often with writerly aspirations. So many involve pets, particularly cats, just like mine. And, before I arrived on the scene, they were already all in touch with one another.

Now several of them are in touch with me. And I've been very surprised by how much we seem to have in common. This illustrates one of the great qualities of the Internet - its facilitation of virtual communities within which there is a commonality of experience that obviates the need for tedious explanations and preamble when talking about the subject in question. Until I looked at these weblogs, I felt I was constantly talking about something very odd and alien when it came to Alzheimer's. People who knew me well enough would say things like 'How's your mum? Is she any better?' And I would feel like saying 'No, of course she isn't any better. It's Alzheimer's, for God's sake! She will get worse and worse and worse and then she'll die.'

Usually, in the real world, there is little point mentioning the fact that my parents have the disease. Until people have dealt with something similar, they seem to view the world through special lenses that make things turn out all right in the end, particularly if you really believe or desire or work hard enough. Or they assume 'it would never happen to me' or have one of several other unthinking responses that push the problem somewhere else, where it doesn't have to be faced in all its inevitability. I sometimes wonder if it is death that people are really hiding from.

Alternatively, there are the well-meaning souls who heap on the praise or drench one in sympathy (something I've always rather hated). But I should not judge too harshly, I guess I was equally awkward before I knew what I know now.

What all this seems to imply is that general society has still not got to grips with dementia. Perhaps this is a modern phenomenon arising from the demise of the close-knit extended family. Maybe there was a time when people grew up alongside ageing grandparents and great-grandparents and had a better grasp of what dementia meant.

Whatever the analysis, I am grateful to these other Alzheimer's bloggers. It is rare and good to talk to people who already know what you mean before you even say it.

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Monday 17 July 2006

Acceptance and denial

By MP on Monday 17 July 2006, 01:15 - Background

I called both my brother and sister and gave them the news. Neither of them was really surprised, of course. We'd all had our suspicions. It is hard to know when ordinary forgetfulness evolves into something more ominous, but early in the year we'd seen a sudden change in our father. He had quite suddenly started getting lost for what to do with monthly or quarterly bills. I began to help him write out cheques and address envelopes. Before long I discovered that his files, which had been meticulously maintained for decades, had fallen into chaos. The first signs of disorganisation dated back about two years, and since then his filing had steadily worsened, until it was non-existent. Some of the most recent paperwork had been stuffed among sweaters in the wardrobe, or left on a shelf in the kitchen. What was remarkable was dad's ability to mask his condition. He had always talked a good story about what he could do. The truth was increasingly something different. My brother was the first to suspect that our father was rapidly declining. My sister and I were more easily taken in by his line in chat.

My mother had been different. Speech was one of the first of her skills to be affected. Her problems were therefore more obvious to us. I'll spend some time over the next few months describing the background and development of my mother's condition, while I meanwhile keep a journal about both of them, and how the rest of us are adjusting.

You've got to be fatalistic about Alzheimer's. Although medicine is advancing rapidly, there is really very little hope of things ever improving for people of our parent's generation. It sometimes feels to me like entering a tunnel that has no light at the end of it - it just gets darker. With my mother's steadily deteriorating condition we had had to adjust to a new set of problems every few months. My father had never been very understanding about her condition. Now he was in the same boat we didn't really expect him to gain any insight into it. The first thing Alzheimer's steals from you is insight.

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