I come from a family of creative, imaginative and, somewhat, disturbed minds. I grew up believing that the Tooth Fairy was a purple, winged pixie with black, almond shaped eyes and fangs. Santa Claus had me dashing past windows and hiding behind furniture in fear that he was peering in from out of the darkness to see if I was naughty or good. If I had half the storytelling talent as my grandmother, I'd be rivaling Stephen King on the New York Best Seller List.
Right now Gigi is caught between two worlds. She is aware that something is wrong and that the things happening to her just don't add up. I'm not sure which reality is worse.The benigns are mostly people she knows such as my cousins, sometimes one of my uncles or even my mother. You can imagine the chaos in the beginning as we, ourselves, would get confused over who was really where and what conversations actually took place.
At times, she is as quick as a whip and able to recall better days when my grandfather was alive. Just the other day, she was talking about how she used to stay up all night cooking and baking pies and breads for the holidays. Those were good times. I can recall being about seven or eight and sitting on my grandfather's lap around the dining room table while everyone drank coffee and played cards after dinner. Purses would be dumped out on the table and there would be change everywhere. I remember it looking like a gold mine! But these days, Gigi is frustrated and preoccupied with the benigns who keep dropping tissues on the floor and hiding her things around the house. She tries talking and reasoning with them, but says they just stare, blankly back at her with no feeling or expression on their faces. She can't understand why they don't respond. There are chickens in the backyard and a few feral cats who travel about with her when she leaves the house to come visit with us. They are all part of the benign family too. And we accept them just as well.
As a family, we' re all working hard to keep Gigi in her home. A nursing home is not an option as this would surely do her in. We have implemented Meals on Wheels who bring her lunches and we have home health aids who visit with her during the day. In the evenings, we rotate between visits and preparing dinners. We don't know how long we can keep this up, as each day she becomes more and more of a danger to herself. Balance and falling are a big concern and another symptom of the disease. There are times when her legs literally fall out from under her or she forgets how to walk.
Gigi is becoming more and more confused and delusional as the stretches between good days and bad become less and less. We have to be careful what she watches on television as it's becoming difficult for her to distinguish between what's happening on the television show and what's happening in real life. Often the two get intertwined. Last week, after she finished watching an episode of NCIS, she thought her sister had been murdered and a killer was on the loose.
We spend as much time with her as we can knowing that it won't be long before we will loose her completely. Perhaps this is a good thing. I don't know. While her body is still strong, her mind is quickly deteriorating. Once her mind is gone, she could live on for years in a vegetative state until, eventually, she becomes unable to move or breathe... and that will be the end. None of us are willing or ready to go there to explore that synopsis and so we continue to take things day by day. That is the best we can do right now and I find myself continuously wondering if parallel worlds really do exist.
So, I'm writing this brief editorial because I was asked to share our experience with others who are or know of someone whose life has also been affected by Lewy Body Dementia or other similar mind deteriorating diseases.This story isn't intended to educate anyone on the subject, but rather to share a little of our family's story so that others may not feel so alone with theirs. As difficult as it is to discuss this issue, I know that it is important to speak out and be heard in order to raise awareness for diseases such as this and, hopefully, one day find a cure. For more information on Lewy Body Dementia and to find out how you can help, please visit the Lewy Body Dementia Association website.
Written By : Jessica Layne
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