Ann’s Update: 15 Jan 2011

Dear Everyone,

Sasha is doing well, and would be doing even better if it weren’t for a “blister” on his left heel.  You could call it the possible beginning of another ulcer, but we don’t want to go there.  The doctors and nurses call it a pressure blister, and we’re trying to get him to remember, every time he gets up to walk a bit (he’s supposed to do that about every hour — with a helper beside him) to walk on the ball of  his foot and not the heel.  It’s not too hard for him to get the message, since the heel hurts severely every time it’s touched.  It’s tempting to think things like, “Why is there always some new ulcer or skin breakdown; why doesn’t all of it go away, now that the skin graft is  successful?”  But the fact is, he’ s still got the peripheral neuropathy, and probably always will have.  Which means, it’s going to be hard to get him completely off pain meds, because there’s always some nerve twanging away, especially at night.  The only reason — for me — to want him off pain meds is that only then can he have red wine again — even just a single glass.  And that is, or was, his favorite drug, his drug of choice, and I hate to see him go through the rest of his years without enjoying it again.  We’ll figure something out.

Since coming home, my impression is that Sasha has had somewhat less “sundowning” than before. Maybe I’m just imagining it.  He certainly does have evenings when reality is definitely — ah — altered. Not a good trip, either; it’s usually associated with some anxiety, such as trying over and over to treat his small television monitor like a computer, and wondering why he can’t find the mouse OR the keyboard.  But I’ve noticed that there are now some evenings without sundowning, or at least with a minimal amount of it.  There’s no question that being home is better than being in hospital, for anyone, but particularly people with mild dementia.  They need familiar faces and things around them, and any place not-home is disorienting.  He goes to the doctor without trouble, because he’s with familiar, loving faces, people who know what’s going on, and he knows he doesn’t have to decide anything or fix anything or do anything worrisome.  And the visit to the doctor’s office is relatively short.  Before you know it, he’s headed home again.

This leads me to thoughts of Burning Man and other places in the world that I’d enjoy seeing again (or, in the case of Burning Man, enduring/surviving again).  If someone offered to lend us a nice-sized RV and pay our way to BM, I would be tempted to say Yes!  Yes!  (and Thank You, of course), but then I would have to sit down and do some thinking.  We couldn’t do it without a care-giver, of course, because Sasha can’t be left alone.  And even the most devoted care-giver would need time off.  Okay, then, two care-givers.  Since they would be together in the RV, they would have to like each other and get along very well.  (Maybe we change the description of the RV from nice-sized to HUGE! )  Could I be the second care-giver?  Yes, I could.  But my months of being just that, last year, taught me how exhausted I can get in a rather short time.  Not only am I no longer young, I have a very bad back.  I also need ten hours of sleep, while Sasha needs about six hours.

What about the many wonderful volunteers who have offered to help take care of Sasha now and then?  Well, that sounds great, but my man needs — as I said before — familiar faces around him, especially at times when intimacy is unavoidable (peeing, etc.).  Above all, there is the possibility of something physical going wrong, like another stroke, when medical treatment is vital within the first few hours, to prevent disaster or death.  Burning Man is not the place to take that kind of chance.

(Sigh.)  Well, we don’t know how things will develop within the next months or years.  Sasha’s body has always been amazingly strong, and his mind has been one of the world’s best.  Maybe ——- maybe.  We’ll see.

This has been a lot of speculation, but that’s what came out today, and that’s what I shared with you.

I’ll tell you more about what’s going on within the next few days.  The weather in the Bay Area is predicted to be dry and sunny and a bit less cold for the next week, so enjoy the sunlight and have a lovely weekend.

Love and Blessings to all of you — Ann

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