Why is it that, in this supposedly enlightened age, mental illness still carries a stigma? Why is it that when people talking about someone who is ill, say in their office, and it's the flu or even cancer, they will discuss it openly, however if it is a mental illness, say depression or schizophrenia, they will whisper about it? Are they afraid that they, too, will succumb to this disease if they admit it's real. Do they feel that they are somehow protecting the dignity of the person with the illness if they whisper rather than talk normally about a person's mental illness?
Dementia, too, affects the brain, and people with dementia are often treated as though they have something that shouldn't be talked about. When I started writing my newspaper column and mentioned my mother's arthritis, it didn't bother any of her friends. When I talked about her dementia, many were shocked and disappointed I'd "do that to her." She didn't ask for either disease and she wasn't to blame for either. What's the difference?
A British study titled, "Dementia stigma leaves sufferers alienated: Dementia sufferers feel alienated because of a stigma attached to their disease, new research has shown," and reported on in the Telegraph, spotlights how, "Those suffering from the disease say that they have lost friends, had neighbours cross the street to avoid them and have also heard their symptoms dismissed as 'just old age' by professionals."
My dad's dementia was the result of surgery gone wrong - a surgery that was supposed to correct the effects of a World War II brain injury. Dad went into surgery just a little fuzzy from fluid buildup behind scar tissue in the brain. He came out totally demented. He was paranoid. He imagined himself to be anything from Lawrence Welk's guest of the week to a presidential candidate. He thought he'd earned a degree from every college he'd attended, even if the graduate classes he had taken were just for the entertainment of his brilliantly curious mind. After the surgery, the quietly dignified man who was my father became a real side-show, at times.
I remember wheeling him into the clinic for his many doctor appointments. Often, he was sleepy and it was just a grueling ordeal. But occasionally, a chipper, extraverted man who lurked in his demented brain would emerge. He would grin and wave from his wheelchair as if riding in a parade float, on our way the reception desk. He would speak to everyone in Spanish, the language he learned in the 1950s so he could help local migrant workers through the social system. He didn't understand the stares of curious people.
My poor mother couldn't stand to go out in public with him. I didn't blame her, as this wasn't the man she'd been married to for over 60 years. It wasn't Dad as we knew him. I didn't blame the people who stared when he made such an entrance at the clinic either, as he was a strange sight. However, there was judgment in their looks and I could feel it. Why was I taking such a man out in public?
When a person with Alzheimer's has an "episode" and causes a "scene" in a restaurant, or even does something as simple as dribbling food all over when out to lunch, we caregivers suffer a horrible paradox. We want our loved one to experience life outside of the home or living center. We want to give them as much normalcy as possible. Yet, I'm sure I'm not alone when I cringed for my dad's dignity. I wrestled with the fact that if he could have helped it, he'd never have been seen acting this way in public.
I do think a lot of what I wrestled with is that I knew people were judging my beloved dad. They didn't think it odd that this aging gentleman was in a wheelchair. They didn't find it odd when he needed a sling for his broken arm. But they stared, a few obviously questioning my judgment, when he acted "odd." The feeling from some was that I should keep him hidden away so that people didn't have to witness this behavior.
Could it be that they are worried that someday this may happen to them? Could it be fear that is behind those looks? Society has a long way to go when it comes to treating with compassion those who are mentally handicapped, whether from birth or acquired disease.
I do know this. The pain I felt for the loss of my father as he was became much more intense when I felt those looks. I wanted to shout, "He's smarter than you'll ever be! He didn't choose this. Please just ignore us and let us get on with our appointment." I wanted to draw a protective cloak around him.
I didn't totally blame the onlookers. I had to ask myself if it was all about dad, or if some of it was about me. Did I feel some embarrassment that he had become mentally disabled, when I wasn't embarrassed by his physical disability? Why did I feel like I had to make excuses for his behavior?
The experience helped me grow. I hope, with education about Alzheimer's and all kinds of dementia, to say nothing about other mental illness, all of society will grow. I hope that society will learn that even though it may be hard to communicate with an old friend who has developed Alzheimer's, that friend needs them. And they won't catch dementia.
I hope, with education, the stigma of dementia and other conditions that manifest themselves as mental disabilities will lessen. More education should help the person with the disease, as well as the caregiver. We all suffer enough without feeling like a sideshow show when we are out in public with our loved one who has dementia.
Published On: October 23, 2008