Washington
DC
When I was working actively as a physician, my
patients rarely came to me with symptoms of early cognitive impairment. In fact, I can’t think now of a single one. Family members did occasionally bring in the
patient when the dementia was more advanced.
I remember Joseph, for instance, who brought his wife and told me that
there was “something wrong with mama.”
Anyone had only to take a brief look at mama to know that she was pretty
much out of it. Perhaps, I thought at the
time, mama’s day-to-day changes had been so imperceptible that Joseph just
hadn’t noticed. Perhaps, but I now doubt
it. At her stage in the illness, I can’t
imagine a husband not noticing.
I was aware of my symptoms several years before other people
would have noticed. True, I didn’t have
it checked out with a neurologist for a while, either, but I noticed the changes right away and asked
Marja, my daughters, and a couple of other friends about it. If they had mentioned anything, I would
certainly have followed up with a doctor.
Are other people not aware of their cognitive changes? If not, why not? Marja and one or two others have suggested
that my previously high IQ made the losses apparent to me before others could
become aware. But that seems
unlikely. I see no reason why memory loss
and confusion should be more noticeable to people with high IQs than to others.
None of us wants to hear bad news, of course. People with cancer symptoms put off seeing
doctors, too. But the reluctance to find
out more about cognitive decline seems so much stronger. We humans have amazing denial mechanisms, of
course, but why are they almost universally so powerful in dementia. It’s shame and fear, I suspect: shame so
strong that one can’t bear to entertain the possibility and fear of isolation so
overwhelming that telling others—even intimates—terrifies us.
Whatever the cause, the failure to share deepens the
shame, intensifies the loss, refuses the love and comfort of human accompaniment,
and smothers the chances to express the many levels of goodbyes so necessary in
this disease. It only exacerbates the
isolation.
There is a real price to silence. If this writing brings only one person out of
the closet, it will have been well worth it.
Before we knew that my mother had Alzheimer's, I found a paper in her room with the Alzheimer's phone number on it where she had been trying to contact them. She never talked to us about her worries with memory loss but she was aware of it and it did create more isolation for her as she would say mean things sometimes and make us want to avoid her, since we didn't know she had an illness.
ReplyDeleteHow much easier your mother's life and better your own life would have been if she'd dared to share her concerns with you.
ReplyDelete