Sunday, May 16, 2010

What can I say about Dementia?

My mother has dementia. I think the first time I knew something was wrong with her was when one day she asked me what I wanted for Christmas about a dozen times or more. After the first time I showed her a pair of fleece slippers from LL Bean and even gave her the page out of their catalog so she could order it. Then with the catalog page in her hand, she kept asking me what I wanted for Christmas. It was so unnerving. I turned to my dad and asked when did this start. It was a shock to him too.

It was probably the change in her routine that contributed to this episode. She probably didn't remember my home that well since I hadn't live in it that long. They only visited me once a year and I also did likewise. We live 500 miles apart so it's not like we can get together whenever we want.

My mom probably had been hiding what was going on for awhile, who knows how long. This is another illness, like mental illness, that people hide their symptoms because they don't know what to think or are afraid of what it means. Her case is as classified as early onset (before age 65 and in her case closer to age 60).

Getting my mom to go see a doctor to find out what was going on was very difficult. She refused for close to a year. Then finally we get her to a doctor who turns out to be a quack and affirms to her she's perfectly fine except for the mild diabetes and high cholesterol. The mini mental exam they give is such a joke. By the time someone fails this test, it's too late to start effective treatment to slow the progression of the disease and improve the quality of life for the parent or spouse. This test should not be relied on. If you can believe it, the doctor didn't seem to take my concerns and examples into account. In fact, it seemed that since she passed the mini mental test, he was satisfied that nothing even remotely like dementia or alzheimer's was present.

Of course my dad was satisfied with this pronouncement but I wasn't. I was glad she was getting treatment for her mild diabetes and high cholesterol but I was the still concerned that her mental status was being overlooked.

Flash forward a year and my mom is starting to get lost driving home. My dad has to call the police to help locate her so he or them get her to follow them home. Even at this point my dad is in denial that anything is wrong with her mental status.

Where am I going with this? Dementia and Alzheimer's are debilitating and cruel diseases. What I mean by cruel is that they destroy the mind before they destroy the body. So the family experiences the death of their loved one twice. Watching their loved one disappear, little by little day by day, month by month, year by year. It's not all bad. I've had some wonderful moments with my mom. There are fewer moments now because there's far less of her there than there has been.

I cried a lot in the beginning, sometimes at the strangest times. I could be driving to work or watching a tv show and the tears would just begin to flow and I could't stop. I haven't cried as much lately and I'm not sure why. Am I used to the idea that I'm losing her, that she's dying before my eyes? I doubt it. It's probably that it's been going on almost 12 years and I don't know when the end will be. Not that anyone knows when the end will come. I think it's because I have to be strong for my dad who's started the grieving process recently. It's so hard for him to realize that she is going before him and he'll be without her. How will he manage? That's why I cry now, because of the pain it's causing him.

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