Saturday, December 17, 2011

A Brief: My Experience With AD

I don’t even remember what year it happened, but I certainly remember how disconcerting the experience was – the first time my mother spoke gibberish. I knew what she meant to say, it was part of the nightly routine, and her gestures made it clear as well. But, there were no words, at least no English words. I don’t know how I had the presence of mind to respond as I usually did without displaying the alarm that I was feeling. The next day, I reached out to someone from the local Alzheimer’s Association, and she reassured me that my mother probably had no idea that her words were not coming out the way she thought they were. It was pitiable reassurance really – my mother was losing her ability to speak and didn’t even know.

Gibberish came infrequently at first, then more often than real words. It was a pleasant yet gut-wrenching surprise the first time she responded to me with a clear “I love you too” when I tucked her into bed one night. That doesn’t happen anymore. There is neither English, nor gibberish, nor a surprise mouthing of the words “I love you.”

No one in my family can really pinpoint when the first signs of the disease began to manifest. Was it after menopause in the early 1990s – they say that can trigger symptoms in some women? Was it after the brain infarct that caused her to pass out at work in 1997? Or, was it the trauma of her only child leaving the country to go school in Jamaica in 1999 that triggered the symptoms? Perhaps there was some underlying psychological condition that predisposed her to Alzheimer’s Disease (AD)?

We got the diagnosis in 2001, after I had left school in Jamaica, and while I was trying to wrap my mind around what life might now look like. I tried to go back to school in Trinidad, but that didn’t work out well. I was too distracted by the need to earn an income and manage a household to really study. Turns out that it was a good thing I left school (for the second time), because it was all I could do to keep up with the changes in my mother’s condition.

Her first seizure came in 2006. Scariest moment of my life! I am thankful to have had people in my life at the time that were willing to help with the myriad of things that needed to be done over the next few days while my mother was under observation in the hospital – not the least of which was getting her there in the first place. Auntie Sylvie was a God-sent!

I learned later that black, female AD patients are twice as likely to have an increasing number of seizures as the disease progresses. At least I was forewarned. They still scare me though.

I’ve grieved a lot, and sometimes I still miss my mother... and my twenties. But the thing I really regret losing is the opportunity to have a friendship with my mother. Throughout life we move from a parent-child relationship into the ideal of an adult-adult friendship. She and I never got to have that, so I will never know for myself the kind of person she was. I hear stories about the kind of friend she was, the kind of sister and aunt she sometimes was, acquaintances have almost uniformly used the word “pleasant” to describe her.

What I know without asking though was the kind of mother she was – a loving, caring, sometimes too engrossed mother who would sacrifice so that I could have everything I needed. Some people would say she spoiled me. Maybe. But it paid off, because after all that she did for me and gave to me, I have no problem giving it all back now.

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