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Saturday, December 23, 2017


I knew last year around this time that it would be the last time my sister Debbie recognized me. She seems now to know that I am part of the family, someone of some relevance to her, but I can't tell if she knows I am me, her brother.  Her vocabulary is now severely reduced, though syntax and phonology are largely whole. What she says makes almost no contextual or pragmatic sense, except for a few set phrases. She stands at the window and talks to imaginary interlocutors at great length, and the monologues might make some sense.  She is largely positive, telling the imaginary friends that they are wonderful people, she loves them very much. With some urgency, she tells me it is time to go now. "Right now, hurry."  If I say we are staying she says "why?" but cannot understand the explanation. She gets impatient and frustrated then. She cannot feed herself anymore, or perform other basic functions. She cannot feel hunger or fullness, doesn't know when she is thirsty or tired, seemingly. She has to ride in the back seat of a car with a child safety lock because she will try to get out of the car at a stop light otherwise.

She will explain something to me using a napkin or an onion, or some small ceramic dishes: "This is the thing. This is the best thing ever. This is what we have to do, like this. It is very difficult. It is a problem. I'm sorry.  I'm very sorry. You have to do it this way..." and on and on like that. Then she'll start like this again "you are a wonderful person, wonderful, wonderful, wonderful, I love you very very very much."

It is not Alzheimer's, but a frontal temporal lobe dementia that affects language (first) and then other cognitive functions. It is not as common as Alzheimer's, but tends to have an earlier onset and hence is more common in younger people. (She is 60 and has been in noticeable decline for 5 years, with some symptoms before that but nothing you would have noticed.} She is taken care of by her husband and by my 82-year old mother. I see her once a year, on my visits to California, and can see the decline every year. A few years ago she was still playing piano or organ in church a bit, and directing the singing of hymns. Now, of course, not. (She was professional organist her entire adult life.)  

The choir performed some pieces she had composed, and she and her husband were at a rehearsal.  An officious woman shooed them out of the room for no particular reason. When they came back a little later, the officious woman tried to kick them out again and my sister's husband just put up his hand and said: "Stop. Let me explain what we are doing here. The choir has just performed a piece that my wife composed. We wanted to listen to it." The woman just slunk away without a word of apology.


Anonymous said...

Dementia is so hard on everyone. I sympathize with you and your family, and wish you a happy holiday season and new year.

Jonathan said...

Thanks. Best wishes to you as well.

Leslie B. said...

GOSH this is difficult.

I'm so glad my father's condition on this isn't worse than it is (yet think it may be worse than we understand). I will have to take the bull by the horns I believe.

Best of luck with this.

Jonathan said...

it is difficult.t but I am not the caregiver so it is a matter of adjusting each year. This might be her last xmas at home or alive. I do not know if I will see her again, and I know if I do she will be even worse. Those taking daily care of her are not weeping every day about it, but adjusting gradually to whatever changes are needed.

Leslie B. said...

It isn't about what one thinks oneself, or adjusting, but about whether they are getting what they need. It is not easy to figure out or to get done. How you feel, or whether or not you will see them again, is not what matters; what matters is how much they suffer and whether you can do anything about it. Damn.