My Journey With Family Alzheimer’s & Memory Loss
How Fading Memories Was Born
I have a Mom with Alzheimers and I’m also the grand daughter and great grand daughter of women who suffered from memory loss. Through my experiences with Mom and Grandma I’ve learned the importance of planning ahead. It’s a subject we want to avoid but facing challenges makes them easier to handle. No planning led to panic for Moms family when my Grandfather died and to my family when my father died It’s my goal with this first season of Fading Memories to help families navigate the emotions and challenges when faced with a diagnosis of dementia, Alzheimers or some other cause of memory loss.
A Family History of Memory Loss
Some background on my families issues with memory loss. I was probably a young teenager when Mom would tell me about my great grandmother. I’d hear stories about how she’d fill a plastic bowl and put it on the stove to boil. Mom would talk about how my Grandmother would have to drive over an hour to take deal with her Mom. Grandma did this while she still had teenagers at home.
I was almost 30 when Grandma started having her own memory loss issues When I look back on it I’m really surprised that she and my Grandfather didn’t have a plan of action since she had gone through this herself. Denial is definitely not a good plan but it seems to run in my family.
My poor grandfather contracted cancer and he fought it hard because as he said “I have to live to take care of your Mother”. She outlived him and my aunt took care of her Mom till the day she died. That so called plan ruined my aunt financially.
Looking Back & Seeing Clearly
I look back over our family history and am shocked to realize that my Mom was likely showing signs of her own illness at the same time my Grandmother was in cognitive decline. This was in the late 90s, early 2000s. Mom must have suspected that she had memory issues because she became very good at hiding the signs of them. We had a business together and one day. I said “you used to have daffy moments a couple of times a week now you’re having them a couple of times a day”. Mom just shrugged off my concerns.
Mom would sometimes take orders from clients, not write down details then forget what they had requested. It became painfully obvious that I had to check in on discussions to avoid having to call clients later to get the details on their order. One day I found an order Mom had taken with no instructions so I asked her about it. She looked at it and said “I didn’t take that our employee did”. Mom and the employee had very different handwriting which made this a stunning and frightening moment. I didn’t know what, if anything, I could have done at that point. I know Mom had told me she didn’t want to end up like her Mother. At that point I was pretty sure that is exactly what was going to happen.
The Next Generation
My parents retired in early 2005 . Not having to watch over everything Mom did without her awareness was a relief, but I worried the lack of stimulation would accelerate her memory loss. Mom deserved to have the time to do the things she enjoyed so I accepted their retirement as a good thing..
About 18 months later my Dad ended up on dialysis. This was the point we should have had a family discussion about their end of life wishes. We should have discussed plans for Mom if Dad were to go first. I’ll never know what motivated my parents to go on as normal because we never had that conversation.
After 2.5 years of dialysis, Mom went through the testing to see if she could donate a kidney to Dad. Not entirely surprising, she was rejected due to cognitive issues. That was the summer of 2008. I thought this was when she was formally diagnosed but to my complete surprise I learned she wasn’t diagnosed until September 2011. (Dad did get a new kidney in March of 2009.) Mom subsequently refused to go to the doctor about her memory thinking, mostly correctly, there wasn’t a lot they could do.
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