Ambiance

You Think My Life is Hard?

March 1, 2010 at 1:17 am (By Amba) (caregiving, Lewy body dementia)

It’s a breeze!  This is what it was like in 2005 (slightly bowdlerized just to be polite).

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[We had just come back from Moscow, from a karate tournament, where J was an honored elder and we had lots of strong young help.  But he was exhausted.  It was our last such trip.]

9/21  J is better today, but it’s been an uphill struggle.  Monday was the first day he was able to walk to the bathroom rather than ride in the wheelchair.  [But nothing was happening since we got back], so I gave him a stimulant suppository which had no apparent effect.  Then we got dressed to go to [the acupuncturist’s] for the first time.  I’d doubted he had the strength quite yet, but he wanted to go . . . We got down two flights, him mostly bumping down on his butt, when he said, “I have to go to the bathroom.”  So we turned around and started back up, him quickly so exhausted he could barely crawl up the stairs.  It took a long time, and when we got into our doorway, him rubber-legged and buckling, he [had an accident].  That was the least of our troubles  I got his pants off and provisionally cleared away, but then he really couldn’t stand up any more.  I covered a stool with a towel and shoved it half under him, but he wasn’t on it all the way and was half falling off.  He was also shoved up against the stove knobs and his body kept turning a burner on, and the black baking pan the coffeepot was standing on got hot and he burned his arm on it.  All this time I’m struggling desperately to keep him off the floor, we’re both smeared with shit, and he’s yelling at me “You’re killing me!” . . . So finally I somehow managed to get the wheelchair through the door and shove it up the single step from the kitchen and under his butt without it falling backward down the step.  Then I was able to wheel him to the bathroom and wash him (and the wheelchair) off.  We were both exhausted and soaked with sweat.  Good workout.

9/22  We got out to acupuncture yesterday, but when we got back J was too weak to get up the stairs.  Close to the 4th floor landing he collapsed and just lay on the stairs, and we had to call 911 to get help.  The strong young cops who came could barely help him.

9/26-7  We dared to go out to PT today.  J got in the shower quite nimbly, then needed to lie down for 5 minutes.  He got down the stairs OK, taking only the 2nd of 4 flights partly on his butt.  When we got back, climbing the stairs was a grueling Sisyphean ordeal, but we made it without help.  I dragged the wheelchair up each flight ahead of him so he could rest in it.  On the stairs, I felt as if I was doing most of the work, pushing him up.  On the 4th floor landing we got into an actual physical brawl.  I was trying to get him to move his foot so he’d be positioned at least partly over the wheelchair before he started to sit down, instead of squatting on air at the top of the stairs with feet frozen to the spot and knees buckling.  He perceived this only as maddening nagging.  I don’t know how it started but he was pulling my hair and we were flailing away at each other, trying to slap, kick, pinch, claw and bite.  It was ridiculously ineffectual, like a fight in a dream; we must not have wanted to really hurt each other.  The upshot of it was that I sort of tackled him and threw him into the wheelchair, half-unintentionally.

9/27-8  We went out to acupuncture today.  By the time we got there, J was already spent, dreamy with exhaustion.  When we got back, I had him sit in the car with me waiting for a 6 PM parking place to become legal; I canted the seat back so he could nap.  Even so, from the time we left the car on Sullivan and 4th [less than 2 blocks from home] to the time we got upstairs was 1 3/4 hours.

I’ve figured out a new, solid way to boost him up the stairs, with my right shoulder.  I basically fit it under his butt, and lock my right hand onto the vertical metal bars of the banister.  He is essentially sitting on my shoulder.  This feels secure, though it puts a lot of pressure on my knees.

At the top of each flight, though, he’s exhausted and panicked and frustrated and humiliated and confused, and heads for the wheelchair like a cow to the barn.  I’ve placed it off to the right, the only and closest place I can put it.  But heading for it puts him with his front toward the chair, his butt hanging out in space over the staircase, and his quads failing.  And he tries to sit down.  On nothing.  . . . When I try frantically to redirect him, he gets mean — says in a threatening voice, “Don’t drive me crazy, Annie or I’ll rap you!” . . . The best I can do is try to stay detached, soothing and calm, the way you would with a flailing, boneheaded horse.

He’s dreaming now — laughing in his sleep.  The lucky bastard.

9/28  J had his neurologist appointment today.  So we had to get up early.  He woke up of his own accord before 7, bright and clear. . . . He remembered [people].  He recited Schiller.  He got into the shower rather nimbly, without a lot of coaching.  He went down the stairs with ease.  When we got home, he went up the stairs with ease.  That is, I just put my hands under his sitz bones and assisted, rather than putting my shoulder under his butt and doing most of the work.  I had him rest in the wheelchair at the top of each flight, but he didn’t need to.

So of course, in shock from being whiplashed from one of his worst days to one of his best, I fell asleep and got a $65 parking ticket.

Was it something [the Korean acupuncturist] did?  She let blood from his scalp and fingers, gave him some herbs, and said, “He’ll be better tomorrow,” which was hard to believe.  Was it his good deep sleep —  “sleep that knits up the ravell’d sleave of care” — with laughing dreams?  The cool dry weather?  Or just the universal perversity that when you call the repairman, the problem vanishes?

NO FUCKING IDEA. . . .

The neurologists were impressed with his condition.  They said he was better than they would have expected.  If they had seen him yesterday, they might have thought he was far down the path to total invalidism.

Yet, I know enough not to get my hopes up and start making plans for more days like this.  Just to enjoy this one, and use it to gain some traction myself.

9/29  J continues good.  He came up the stairs without a rest tonight after PT.  He did [have another major accident], but overall, that’s a net gain.  If I have to choose, I’d rather swab that deck than tote that barge.

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Incredible, huh?  I know, I can’t believe it myself.

Life now is a breeze by comparison.  I’m glad I recorded all that and more, so I can truthfully say, “The worst is over.”