Perceiving Dementia

Perceiving Dementia: I am a psychologist, and one of my specialty areas is the assessment and diagnosis of mental disorders. In fact, I have taught this stuff to graduate students. And so I am humbled (but not surprised) to find that I have had such tremendous difficulty in accurately perceiving my own mother's mental problems. I find that it is strangely hard for me to accept that she truly does have some sort of dementia. Partly it is because my mother has been unreasonable (and suspicious) all her life, and so I have a high tolerance for this kind of thing, in her. But, when a person moves all the way into delusional thinking, it has gotten serious. And this is very common in the progression of dementia. Today I found a web resource, an excerpt from a book (by William Grote) about helping elderly parents, that seemed to eerily echo my experience with my own mother. Here are some bits taken from that online excerpt:

"Dealing with dementia symptoms in your own parent can stretch the limits of your sanity. Sometimes you may not even notice the first symptoms of dementia -- the slow decline of your aging parent’s memory. The symptoms of dementia may continue until your aging parent starts exhibiting signs of other mental disorders, such as paranoia or delusions, which frequently piggyback on the effects of senile dementia. These symptoms may keep reappearing, until you can’t ignore them and you’re forced to take action...

My own mom... was highly organized and extremely independent... But [her] new VCR [and microwave] were never turned on unless I happened to visit... It never dawned on me at the time that my mom had stopped wanting to learn new things...

Soon Mom became suspicious and paranoid about her neighbors. She thought they could see into her windows, so she would keep the shades drawn tight with safety pins. She talked me into erecting a large barrier to block the neighbor’s view. I did as she asked, even though I thought it was strange to be building a barrier. Mom had always been a little paranoid anyway. I figured it was her scar from having survived the Great Depression. I rationalized that if building a barrier helped her sleep better, and she could open the shades in those darkened rooms, it was worth the effort. I didn’t realize the obvious – that her dementia and her paranoia was growing...

The amazing part of all this is that my sister and I continued right on with our lives, denying Mom’s odd behavior – while helping her change bank accounts and get new locks for her apartment. We just figured it was normal for our aging parent to become strange when she turned 80 years old. We never suspected dementia was taking her away from us.

Symptoms of dementia are insidious, because they start so slowly. Often they are mixed with periods of what appears to be normal behavior. So just when we thought she was showing symtoms of dementia, she’d return with what appeared to be complete clarity... Looking back, I can clearly see the progression of the disorder. But at the time, senile dementia sneaked in and stole Mom from us without a clue. Because of our busy schedules, hectic lives, and maybe a little denial, we didn’t see it until it was too late...

So we took Mom to doctor after doctor trying to find a cure for her symptoms. Was it low iron, low zinc, or low potassium? They drew countless pints of blood trying to rule out what could be causing her behavior. But eventually, most of the doctors proved worthless in offering real help. Not one seemed to be able to tell us what was wrong. None of her five doctors could give us any advice that would help her. They all seemed to deny there was any problem. Fortunately, we met a geriatric counselor who advised us to take her to a local hospital for a geriatric evaluation. I wish we had done this evaluation five years earlier...

If your parent’s doctors won’t get involved, it may be up to you to notice that your parent is exhibiting symptoms of dementia and up to you to initiate action to treat their dementia... check the health page on this Web site for news on the latest scientific tests and studies relating to dementia and how to prevent it. Also there's an excellent Website that may help: http://www.dementia.com "

I think that the most amazing, and discouraging, aspect of William's story, and mine, is that the physicians who were involved were unwilling or unable to offer useful assistance (and apparently, this is not at all unusual). The physician who is "treating" my mother in the nursing home is a board certified specialist in geriatrics and internal medicine... yet this doctor has shown zero interest in working with me to develop a plan to assess and care for my mother's obvious cognitive deficits. How many children of aging parents have the wherewithal, the time and resources, etc. to go beyond the doctor's shrugged shoulders?