Searching for the Little Things

"Life" people say "is a rich tapestry". How right they are.

We weave our tapestry of life day by day, second by second as we live it. The warp and weft are woven into patterns by our every action. Normally, we are so busy weaving that we have no time to sit back and examine the pattern closely, looking for flaws and discontinuities. So I decided to keep an eye on my tapestry to see if I could detect signs of the progression of my dementia. What I found proved both interesting and unsettling. Every now and then, a person living with dementia gets a "wake up" moment of realisation that confronts them with the reality that they have a worsening condition. As an insulin dependent diabetic, I need to dose up before meals. My ritual consists of attaching a new needle to an injector "pen" syringe containing an ampoule of Humulin, dialling in 2 units, pressing the plunger to prime the delivery system and remove any air, then dialling in the required amount of Humulin (40-odd units usually) and injecting it into my stomach, thighs or buttocks.

On a normal day, that's what happens. Lately though, I'm having trouble following this simple routine that I've become so familiar with over the past few years. Recently, I've begun priming the syringe, and then sticking the needle into myself, only to realise that I haven't dialled in the required dose of Humulin. Consequently, I have to remove the syringe, dial in the units and insert the needle for a second time.

This can sometimes be quite painful. Worse than the physical pain though, is the pain and distress of knowing that I am no longer capable of carrying out this routine task reliably. Like a spider on LSD, the pattern I am weaving is beginning to display more and more flaws.

Confronting the evidence that this is indeed happening is difficult. People will tell you not to worry. They'll say "It happens to me all the time" They'll reel off stories about how they've lost their spectacles, their phones, called people by the wrong names etc. They want to make one feel better about one's self.

All very laudable, but let's not kid ourselves, there's a point beyond normal, where one's forgetfulness becomes potentially dangerous, and a real impediment to a normal existence, and a heart-breaking reminder that another station has been passed on the journey into dementia. Then of course, one begins to notice other aberrations that are occurring. An increasing difficulty with speech. Still controllable, but requiring more effort.

More indecisiveness. Time spent searching one's mind for the next thing one ought to be doing. One knows there's something one should be doing next, but what IS it? The answer is tantalizingly, infuriatingly, disappointingly just out of reach. So tasks sometimes remain undone. I let people down. I put food in the oven, but I forget to note the time. Later, I have no clue about when I should be dishing up the meal. So food is sometimes spoiled. The more I think about it, the more I see that one of the facets of dementia is that it renders one incapable of repeating the patterns of everyday life consistently. I find it difficult to plan ahead. I'm muddled, unsure of myself. The tapestry of my life is not yet unravelling, but the story it depicts is becoming less and less coherent.

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