Ann’s Update: 4 Feb 2011

Dear Everyone (except males between ages 15 and 34 living in Nigeria),

Let’s see what reaction THAT brings about!  The China remark and its responses brightened my day immensely, since it inspired a couple of tiny surges of adrenaline in me (in obvious response to the tidal waves of adrenaline in those who responded), and if there’s anything I need to help me get out of bed, it’s a pile of tiny surges of adrenaline.

We are getting better and better (“we” meaning Sasha), but there’s one problem that remains, of course: the one that makes it necessary to have 24-hour caregiving.  Sasha’s brilliant mind (over 180 I.Q.) is, as you know, suffering from mild dementia.  We’re finding out a lot about so-called dementia.  For one thing, the state of mind — the acuity of mind — varies tremendously over every 24-hour period.  There are days when he’s at the top of his form, as the British say, full of puns and funny comments, and when he’s in the lab (three times now), his chemistry is right there, with a few small holes here and there, but basically intact.

But at night (thus the term, “sundowning”), there is anything from mild misperception to frank hallucinations.  And, unlike what one would expect, his profound experience with altered states doesn’t help him, because these states are full of anxiety and unease.  Even when he’s having no pain from the peripheral neuropathy, he’s inclined to lie in bed and toss and turn, and when you ask him what’s wrong, he says, “I don’t know,” and if you ask if he has pain, he says, “I don’t know,” and then he argues for getting back into the Lazyboy chair (where he’s spent many hours in the evening), where he’ll go to sleep — usually.  The only thing wrong about this sequence of events is that, unless he spends some hours with his feet up on the bed, his feet will begin to swell.  The only thing wrong with swollen feet is that they are inclined to produce small cracks in the thin skin, and those cracks can form ulcers, and ulcers are what we’ve been fighting for the past year.  With less than good blood flow, ulcers are real trouble, and they just won’t heal.

It’s possible that some of the sundowning at its worst may be due to one of his meds., Lyrica, which is one of the few good nerve pain medications available.  One of its nastier side-effects can be, “mood-alteration,” which is pharma-speak for “messing with your head.”  So we might be faced with a choice:  attacks of nerve pain, or increase in sundowning.  Even if we had no drugs that affected the mind, Sasha would still have a certain amount of sundowning, because it’s one of the things that goes with dementia.  I’m grateful that it isn’t worse than it is, but one hates to see it there at all.  I’m also aware of the fact that my reaction to it is part of the remaining shreds of denial — my semi-conscious refusal to accept the existence of any dementia at all.

My problem, not his.

We’ll see what the doctor says.

Bedtime.  I should get on the stationary bicycle, because my legs are feeling very tired and achy, and I’ve got to get their strength back.  But bed is so much more inviting.

Bicycle in the morning.

Goodnight and Good Sleep to all of you.  And Blessings.

Ann and Him.

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