Blog 44: Decline (Pt 1)

When you research the words Vascular Dementia, you discover that, according to the experts, the inevitable deterioration in brainpower in the patient follows a plateau then decline pattern.  The carer, they state, will notice a permanent decline in a faculty and then no more loss for some time.  Then there will be a further deterioration and so on.  I did not particularly notice this pattern with Bill’s decline.  To me, it seemed that Bill’s brain was in constant, step-by-step, shutting down mode.  At first, I kept thinking:

If we can just keep your brain at this point …or this further degraded point …or this one, even further degraded …without any more decline, we’ll be able to keep on living a reasonable life.

But, after a time, after he’d lost the ability to measure and read and write and interpret calendars and maps and handle money and understand reflections and talk in sensible sentences, I gave up that hope and understood that, although the decline was gradual at first, it was relentless and unforgiving and forever downhill.

It actually took six years for Bill’s competence in language to sink from sentences without nouns to utterances composed almost entirely of made-up words.  In 2006, for example, Bill was able to say:

“Would you pass me that thing (pointing) and come out here with me?  I need you to help me with…”

But by the end of 2011, he sometimes could only manage:

“Please, can I huff left ti bumma?” and “Shreen henzui fookin fookin fookin.”

And, although I didn’t really document it, I believe that Bill’s language loss from 2006 to 2011 was continual and there was not much plateauing going on at all.

By August 2011, Bill was deteriorating quite rapidly.  Plateaux eluded him.  Physically, he was much weaker.  His feet remained swollen, he was having difficulty walking up to the post box and, when he wanted to turn around, he had to make the turn in a crab-like fashion, carefully moving his feet, little by little.  He was starting, too, to have trouble with the action of sitting down.  He had to watch as he placed his bottom on the seat and, sometimes, miscalculating, he missed the seat altogether.

Constipation was worrying him, too.  I have read that dementia patients sometimes forget how to push when they need to evacuate.  That was probably what was happening to Bill.  Thankfully, by adding Osmolax and two Coloxyl tablets to his diet, the problem was solved.  But urination was also a bother.  Though he was, by this time, wearing incontinence underwear, he still liked to use the toilet in the mornings.  With his brain on its path of perpetual shut down, however, he was losing his sense of body awareness and trouble occurred because he sometimes could not find his penis and, when he did, he didn’t know how to hold it.  Bill had always been such a private person, so he didn’t appreciate me trying to help him.  If I was quick and deft, the outcome could be successful but, if I fumbled, I could be thumped.  Then, after the thumping, Bill would straighten up the incontinence underwear and move off without using the toilet at all.

The major problem that we had, however, over those last months, was changing Bill’s clothes.  The problem lay, not in the fact that he did not understand that we wanted to change soiled clothes for clean, as was the case beforehand. It lay in the fact that Bill, six years or more into dementia, scarcely processed our spoken messages at all.  Because, these days, Bill was unsteady on his feet, we often changed him in the family room where he could put his hands on the back of a chair.  Then, we would slip his shorts and undies down. If we needed to, the incontinence undies could be torn off but, to get Bill’s shorts off and new undies and shorts on, we needed Bill to lift his foot.

If there were two of us there, it wasn’t too bad.  One carer could support Bill while the other would prise his foot up. But, if I was on my own, which was always the case at night, it could be a nightmare.

“Lift your foot, Bill!” I would command.  “Lift your foot.”

But Bill, concentrating with all his might on hanging on to the back of the chair, would not hear, could not process.

“Lift your foot!” I would demand shrilly, hitting him on the leg, but it wouldn’t happen.

Then, in desperation, I would force the foot up. It was like uprooting an oak tree.  Mostly, everything would be all right but on a couple of occasions, he toppled.  Then I had to call on the young man next door to help me get him up.

And the Care Facility beckoned once more.

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a blog about my dementia journey


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