Confusion and Hope

I , watch their faces, see their broken bodies, hear the rambling
of their minds . . . Terrified as I am of developing dementia I see
the souls of these people still shining – maybe only a flutter or ,
or occasional blink. Its still there until the end.

When my father died, he had lost that light long before.  A
singer at heart, he would spend his days rolling out one song
after another.  Slowly the number of songs shrank.  Then the
words . . . until all that was left was a wavering hum. It was a
sorrow more than any other. For all his flaws and mistakes,
and the many goodness’ he gave, loosing the voice of his
wisdom, his ability to listen, really listen . . . and his gentle
spirit – his fathering and ability to be a good husband, left huge
holes in my life.

I had dementia myself for a year due to medication conflicts.  It
scared the hell out of me and my children. I still have cognitive
conflicts due to brain trauma. I’ve made it clear I want to die if it
increases.  I do not want to be a burden to my family and need my
independence.

Yet some of these people are funny, many are so full of knowledge
if you can just tap into it. They have their personalities and some led
amazing and powerful lives. They are caring in the midst of their own
suffering.

There’s Carol – trying to clean dishes and tables even though she
has a broken arm and hip. She wanders the hallways, notes when
others need help or are lonely. And she follows the aides and nurses
around like a lost puppy, babbling away.

But Rose is also here. Horribly confused, miserable, tears dripping
down her face as she cries for help to go to the bathroom 10 or more
nightly while I drag myself out of bed to press her call button and try to
calm her down. She doesn’t know herself anymore, how she appears
to others, what her life is like. Others near her are pushes to the edge.

I’ve know people who were the Director of the Board of the Metropolitan
Opera House, the couple who originated Pocket Parks in New York and
throughout cities in the US. I’ve taken care of the female Trailblazer on
Wall Street who is now deeply damaged by Alzheimer’s, the Corporate
President of highly successful businesses.  There are authors, including
one who has written over 30 books as a Professor of History. I know an
opera singer who doesn’t talk anymore. Its crushing.

Alzheimer’s is a horrible disease. For a long time, they know they are
loosing the best of themselves and are scared, paranoid.  They reach
a point where they may get aggressive. They will look in the mirror and
not know who that person is.  And in the end, it can reach a point when
there is no motion no recognition of others much less themselves.

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