The neural network
By MP on Tuesday 15 August 2006, 17:11 - Reference - Permalink
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):
- Mom And Me Too (May 2003 - Blogger)
- Mondays with Mother (September 2004 - Blogger)
- Smoke & Mirrors (February 2005 - WordPress, accepts Trackbacks)
- The Tangled Neuron (November 2005 - TypePad, accepts Trackbacks)
- Dementia Blues (March 2006 - Blogger)
- Jewbu Quest (March 2006 - Blogger)
- The Yellow Wallpaper (March 2006 - WordPress)
- Living with Alzheimer's (June 2006 - Blogger)
- Had a Dad (June 2006 - Blogger)
- Alzheimer's - The Carer's View (July 2006 - Blogger)
- My Mother's Journey (July 2006 - Blogger)
- Memory Lane (August 2006 - WordPress, accepts Trackbacks)
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.
Comments
The neural network. I kind of like that. I've been meaning to get over here, but with mother it's hard to do, but then I don't have to explain that to you. This is a good post, and you're right about all of the commonalities (although I hadn't noticed the cat one until now) - they bind us into a sort of club that nobody wants to belong. I'll be much more coherent after my morning coffee, but just wanted to stop by and say "Howdy".
Mike - Amen to that! As I said when I started my blog, I didn't get the support I was looking for from traditional, face-to-face support groups, where some people actually chastised me for not doing "more." But the online caretakers community is so wonderfully accepting of all the different levels of caretaking, and I have learned such a lot from reading these blogs. I, too, have noncaretaker friends and colleagues who say (and are very well-meaning), "Is your dad any better?" and that always sends me to the blogosphere. Thanks for posting all our links here.
I am delighted to find like-minded caregivers who want to write about the all-consuming life of Alzheimer's. I would enjoy sharing insights gained from this experience and/or the written poetry, articles we have created to cope with the otherwise overwhelming emotions we encounter.
Thanks for posting this great list, Mike. I too have been pleased to find some many well-written heartfelt blogs on Alzheimer's and dementia.
Thank you so much for the recognition and for compiling this list. When I first started, I also didn't find other blogs on the topic. But, I think that it is important that more and more of us talk openly about our experiences losing someone we love to this disease. So, please, keep it up!