Not Falling Off Cliffs, Just Sliding Downhill

Apologies for the long silence.  No dramatic reasons - fatigue, as usual, and also had to get through an excruciating writing assignment, a long technical piece on accounting issues that I've mostly fought to a standstill.

The quick update is: he's worse - not in any dramatic ways, and it's impossible to say whether the surgery played a role, or whether he's just declining, and the timing of the surgery was a coincidence. 

Most notable are the speech issues.  Monday night and Friday night, we had 45-minute phone conversations that consisted entirely of word-like sounds - once again I had no idea what he was talking about and spent my time improvising my half of the conversation, which may or may not have intersected with his half.  During the Friday session he fell asleep for about two minutes, then picked up as though nothing had happened.  Tuesday night we had a five-minute conversation - he told me I should get together with Alan and figure out the timing of my visit, then said "Thank you very much," and hung up.

During the visit itself, on Wednesday, he was in good spirits but mostly incoherent.  Added to his own distorted speech were the new listening comprehension problems.  Recurring patterns - he processes words as homonyms ("Let's go to the dining room and eat," I said.  And he said, "East?  East?")  Also, he'll make a statement, then immediately say "Huh?" as though you've said something, except that you haven't - there hasn't been time.  It's as though his brain is telling him that you should have responded, so it decides you have.  In general there's a disconnect between sensory input and his ability to process it - he's had that problem with visual information for years, but now it applies to sound, too.

M visited him Thursday and told me she'd noticed the incoherence - says she thinks it's part of the overall decline.

Upcoming events - Monday and Tuesday I'll finish off the writing assignment.  Wednesday I'll go up to New York to visit.  His 93 year-old cousin Harriet is coming to see him again, and I'll help manage things.  No expectations - the last time I thought it might be their last get-together, but it seems it wasn't.  I've updated Harriet and she told me she won't expect much.  We'll see how it goes.

As of Thursday I'll have a more open calendar - which means I'll get out my nursing home notes and start scheduling visits for the second half of the month.

More frequent updates to follow.

Comments

[julie]

OMG, we seem to have come to the same place although months ago I thought you were way
ahead of us. We all seem to end up here so I guess it doesn't matter how soon we got here.
I'm getting out my nursing home notes, but we don't have so many choices here. Well, we
could go to the one that is one hour away, or the one that is two hours away. Hmmm, does
that mean I drive everyday, every other day, once a week or do I move to be close. I don't
know, I think I'll wait and see what decision is made for me.
I hope things work out so you can be happy, that's all we can hope for I guess.
cheers,
Julie

[Shu]

Hugs from here. No matter what is going on it's all hard and breaks your heart.

It is extremely rare that I visit my mother without having at least one melting into tears (me, not her, although usually one of us is joining the other). The 2 things we've found that pull her out of the abyss are visits from the new baby great-grandson who enchants her completely and on non-baby visits, I've been reading to her. Don't think she follows the story or retains the goings-on of the characters, but the act of being read to seems to take her somewhere calming and 'special' -- maybe to childhood? I'm glad to have discovered this means of reaching through.

Sending you and your dad (and your wife!) hugs as you search for those things that take him to a place (an inner place) that lets him feel safe and comfortable and secure. That really seems to become the goal however it can be achieved. And may you find a loving, caring nursing home in the 'nearby' for y'all. THE HOLY GRAIL!

Best,
Shu

[Maryellen]

I can't begin to imagine what it is like for you and others who are on this complex journey with a loved one. Wishing you peace and comfort.

[Alan G. Ampolsk]

Julie - I think the reason we're in the same place is that I haven't made any progress on nursing homes in the past five months. Arguably I should have - though since his home situation has been somewhat stable, I decided to leave it alone for a while. That may or may not have been the right choice - I'm sure I'll find out when it's too late.

Shu - that's interesting about reading to him. I've tried it with my father a couple of times, but he tends to intervene and jump into conversations instead of listening and relaxing, and you wind up back where you would have been. Of course, most of these experiments have been at high-stress moments - like in the hospital. I'll try again on a quieter afternoon.

Maryellen - it's really good to hear from you, 'sbeen a while. I'll be in touch shortly. Hope all's well with you.