Variability (2)

Napa, CA

In the previous post, I described how my symptoms come and go and how symptoms—especially in the earlier stages—can vary greatly from person to person.  This variability can be confusing to others. 

The Public Image

The public image of Alzheimer’s disease is the blank face of the old person, unable to recognize her family, wandering away from the nursing home, slumping in a wheelchair drooling, or lying like a vegetable in a nursing home bed while medical people try to prolong her life indefinitely.  That public image doesn’t include the person like myself who has only mild cognitive impairment or the person with significant symptoms who is able to hide his impairment well.  And it doesn’t include people who have profound difficulties in one area but are only mildly affected in others.

The result is a series of misunderstandings.  On the one hand, other people tend to doubt the diagnosis of a person with only mild symptoms that aren’t really noticeable.  On the other hand, people tend to treat those with noticeable symptoms as if they were more profoundly impaired than they actually are.  The public image has no middle ground, no place for the wide expanse of impairment  within which the person with Alzheimer’s may live.

Mild Cognitive Impairment

To take an example, my Alzheimer’s can so far be recognized only by a careful observer, yet, as I wrote in Variability (1), I am myself aware of intermittent confusion and difficulty word-finding.  Many others who have written me in response to this blog have had a similar situations.  If we mention our symptoms to other people, they frequently discount them, ascribing them to other things: to normal old age or inappropriate concern about old age, to normal forgetfulness (“I know just what you mean; I have the same thing”), to anxiety or depression.  Sometimes, they will acknowledge the changes are abnormal but be reluctant to accept the diagnosis: It’s “just one of those weird things that can happen to anyone.”  When I described my $24,000 bookkeeping error, my friend replied that that wasn’t so bad, suggesting that it may have been just poor concentration or sloppiness in my work. 

These responses are well-intentioned.  People want to be empathetic and comforting, to assuage our fears, and to include us in their circle.  The issues of embarrassment (2) (3) and fear that are associated with the disease also play a role, of course, but the reality is that we don’t fit the image most others have of Alzheimer’s.  It’s hard to blame them for misunderstanding.

The conclusion a person with mild impairment may come to, however, is that others won’t really listen to his confusion and pain over what’s happening to him.  How can this be happening to me?  What do these symptoms mean?  How fast is this going to progress?  If my friends and family have trouble believing that I have Alzheimer’s, where is the place for my pain?  We become needlessly isolated … our worst fear.

More Severe Symptoms

The other side of the problem caused by the public image is that the extent of a person’s disease can be overestimated.  He may get lost repeatedly, or forget familiar names, or become otherwise confused yet retain a normal sense of self and capacity for relationship.  Others may nevertheless treat him as if he were far more demented than he actually is and, often, avoid him, afraid they would be unable to relate to him. 

In Speaking Our Mind, Lisa Snyder tells of a man whose impairment was an extreme difficulty finding words.  He was almost incapable of responding verbally.  It was easy to interpret his inability to respond as proof of advanced disease and believe that real communication was impossible.  Yet the man was still hungry for intellectual interaction, in which he was able to participate in as long as Snyder was patient enough to let him find the words on his own time. 

Another example: Unless you knew that personality changes could be a primary symptom of the disease, it would be easy to assume that, say, the very paranoid person in the nursing home is just out of it.  And if that person’s mind were actually fairly clear yet she’s been treated as completely demented, she would then have good reason to be paranoid.

As Lee Ann Gerleman reminds us, the person is still in there, often aware of much more than we think she is, hungry for love and attention.  She may have forgotten that the little girl who comes to visit is her granddaughter, but she loves that little girl who visits and laughs with her, anyway.

But too often we treat them as children, speaking overly slowly or very loudly or, worse, just ignoring them and talking only to the caregiver.

General Misunderstanding

The faulty public image of the disease, then, can lead to frustration not only for mildly impaired people who are treated as if everything is okay but also for people who are only moderately impaired and treated as out of it.  Either can lead to frustration, depression, isolation, and confusion.  It’s important we lift the taboo and get the disease out of the closet, so that all of us can understand better what’s going on.  It could at least mitigate the isolation that is such a painful part of Alzheimer’s disease.