There is an interesting account in the NYT following a woman from the time she was diagnosed with MCI. She seems to have more insight and coping mechanisms than my husband did at this stage, nevertheless, it is a fascinating read.
I read it, too...or at least skimmed through it. Larry didn't have one iota of that kind of insight. I think self-awareness is usually one of the first things to go, and that most AD patients don't have the ability to see into their own condition the way this woman did.
I, too, read the account. Very much reminded me of Still Alice. What a terrible thing it must be to realize what is happening and also what is to come.
Nice article--though I didn't have the time (or energy?) to read it all. For a very short period a few years ago my wife had some awareness of her condition. I used to keep a journal, and it contains a few of those incidents (slightly edited):
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"Why am I so stupid?" she said.
"It's not you," I said. I thought for a minute. "It's your medical condition." I tried to explain, but she didn't really understand.
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We were playing dominoes tonight, one of the simple games that involves playing on either end of a string of tiles. She couldn't do it. She's lost her understanding of turn taking. On her second move, she had to find a tile with a 3 or a 5 on it. This took more than five minutes, even with my regular prompting. I looked, and she had two tiles with 3s. I put the game away eventually, saying, "This is too hard."
Unusually, she responded. "You're saying this is difficult for me. Why is that?"
We did a memory test. "Who's this cat?" She got it right. "Say your own name." Incredibly... a long pause. "What's my name?" She got that right, too. "Would you like me to say your name?" No answer." Eventually I told my wife her own name.
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"Sometimes I wish, like 'zap,' things would go back to the way they were."
She was talking about having dropped crumbs in her lap while eating breakfast. I gave her a hug. "So do I, sweetie."
I usually save up my reading for before bed and this article was so long that it took me three nights to finish it. It was worth reading, though, because it gave an unsentimental view from the perspective of someone who has the disease. The subject of the piece, Geri Taylor, had a lot of resources available to her. A local organization had regular meetings in which the people played memory games and also a music game similar to "Name that Tune." She was able to continue her interest in photography by employing a helper to edit and catalogue her photos. But although this made life more enjoyable for her, in the end, she still had Alzheimer's. Marche is right about the comments. They are fascinating, since they reflect so many different perspectives and experiences.
I didn't finish the article since it was so long. I am a little concerned that the general public will think that there are a lot of resources available for people with Alzheimers, when in fact, most places, and where I live there is very little available. If you don't have money then you are stuck dealing with this disease on your own, and it sucks.
cvh, I was also impressed with the resources that were available to Ms. Taylor. A lot of these resources (the structured group programs and support groups for early-stage patients) were provided by the organization Caringkind. I looked it up and it is the former New York City Chapter of the Alz. Assn., which broke off from the national organization in 2015. They seem to be more oriented to providing services to local residents than the Alz. Assn. is. Plus, with the large population density and relative affluence in NYC, they probably can offer more services. Even though I live in a populous state, the Alz. Assn. chapter that serves our area covers two states (Mass and NH) and the services offered by the small office in our nearest city were not very impressive when I sought them out. There were no programs for early stage patients and they had a once-a-month caregiver support group, which they cancelled for three months because the facilitator did not want to work during the summer! So I think that it makes a big difference where you live. We all deserve better.
Added after more thought . . . One of the theme that I see across these message boards is the feeling that we are on our own. People write about family members and old friends who abandon them and a society that offers few services to our spouses and no help to us for the practical problems we face. For most of us, the walls close in after a few years and the best we can do is to keep putting one foot in front of the other.