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".....I understand that in the early stages of dementia changes are slight and it is possible to continue to do lots of things. One may:

"• forget things easily, repeat things frequently,
• experience problems with language, such as appearing to be stuck for words or losing track of a conversation,
• find new situations or places confusing,
• show poor judgement or find it hard to make decisions,
• lose interest in other people or activities,
• be unwilling to try new things,
• experience low mood, become anxious or withdrawn,
• feel easily frustrated or angry.

"All of these I can identify in myself. How should I be reacting?"

The above was posted byathgarvan about seven days ago and i was moved to comment on it but it seemed inappropriate at the time.

People. including so-called experts, are affected by the ways they or their culture frame things.  Cute, in one frame becomes Annoying in another.  Confusion, poor judgement, lack of interest,, inertia, sadness, frustration and anger, which are so symptomatic when framed as "dementia" may simply be "problems' or "characteristics" in other frames, even if they all appear together.

And, indeed, they all do appear together, and have done so all my adult life.  These are also the "symptoms" of autism.  Indeed, my frustration and anger have lessened; even my disinterest in people has slightly decreased, and Dianne says that i sometimes show good judgment.

When my mothers became "confused" shortly before their respective deaths at 97 and 85, i grieved, but it was a totally selfish grief.  I was sad that they no longer knew me.  But the things they could not remember, were things that they probably would not have wanted to remember.  For example, my birth mother died over a year after her husband died.  His death would have been unbearable if she had been able to remember it.  But he was always just around the corner somewhere and she cheerfully awaited his return.

My mentor and friend is living in a nursing home in the Eastern United States.  He is a few years younger than i and he began to drift into Alzheimer's about seven years ago.  He is now totally cut off from his past.  He "has no mind of his own."  But the Tao Te Ching says that a wise person "has no mind of her own."  Having his own mind got in the way of his spiritual journey.  His "own mind," distracted him from being with God.  One of the last coherent statements he made was to tell his wife not to worry about him, that he was "beyond happy."
I have no idea what is going on behind the shell of flesh of bone that used to be "Bob W."  But i am unconvinced that it is not wonderful.

Yes, i am 80, and i have read the statistics, and i hope i will remain "functional" for as long as Dianne needs me, but i no longer fear dementia, because i no longer see it as a living death, but as a possible interesting transition to something else -- maybe oblivion, but maybe not.


( 4 comments — Leave a comment )
Jan. 11th, 2014 09:47 am (UTC)
Thank you ever so much for your lovely comment, it is much appreciated. It helps a lot to hear how others understand and have experience of coping with the situation in themselves or in others.
Jan. 11th, 2014 03:14 pm (UTC)
Very wise, I think.

Back when Alzheimer's disease was beginning to be publicized, there were enormous numbers of interviews with frustrated caregivers worried about "bringing them back to the present," I wondered, why do that? Why not visit people where they are, and work with them there? (I am so glad that attempts to "bring them back" are now officially discouraged.) Similarly, when you need to do really tough stuff with children, it's much easier, pleasanter and more effective to do it in play space. And when interacting with a sports fanatic it works better to enter into her/his paradigm and use sport framing. And so on.

Which is to say that there is validity and soundness in all sorts of frames of reference, that can be glimpsed on a visit, where visiting is possible, but not thoroughly known except from inside.

Only the ways of being that are traps of fret or anger seem inherently undesirable to me. (Well, and of course depression, which strikes me as another sort of thing.)
Jan. 11th, 2014 05:25 pm (UTC)
I like your take on these important issues or transitions which come to so very many people, maybe even in our lives before the journey ends. I would like to be able to embrace whatever comes as fully as possible.
Jan. 12th, 2014 04:50 am (UTC)
I'm glad to hear you say this, because what that person speaks of is NOT 'dementia' per se - much of it is simply depression, and much of the rest is environmental. Dementia is cognitive malfunction, not the expression of personal opinion.

p.s. Speaking of transitions, when the British author Aldous Huxley died, he did so while tripping on LSD, at his request and by his wife's agency. Would that not indeed be a trip? Like, wow, man…

Edited at 2014-01-12 04:56 am (UTC)
( 4 comments — Leave a comment )



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