My 88-year-old mother is in a nursing home in the later stages of Alzheimer’s disease, having been experiencing it’s effects over the last 10 years. Her only surviving sibling, a sister who is seven years younger also has Alzheimer’s disease. One of my fathers three siblings had Alzheimer’s disease. I am all too familiar with the devastating impact this disease has on an individual’s ability to navigate the world, the strain it puts on families who need to make difficult decisions and how 24/7 care will drain a substantial nest egg.
I have done fundraising for the Alzheimer’s Association and this year collected over $3000 for the cause. I would like progress to be made to lessen the impact of the disease on others and I’m sure my mother would feel the same if she were cognitively able to understand and make the decision herself.
This particular study would need a blood sample of my mother and her sister to look at DNA. They would also need their medical history. An autopsy to definitively determine an Alzheimer’s diagnosis would be appreciated and the collection of tissues for potential research and other studies in the future can be part of it. They do at least try to cover some of the cost but it is uncertain whether all of these costs would be covered.
My time is already limited overseeing my mother, working a full-time job and trying to have a life but I know this is important. There is also a feeling that I would be desecrating my mother’s body which feels wrong. Can anyone speak to that part of it also? I know I would have to get over that and also convince other family members to be on board.
I also need to check out this link:
that the Alzheimer’s Association has to notify individuals of research studies that need participants. Perhaps I would find another study there that would seem more like the right one to do.
So I’m in the middle of figuring this out and would love to hear from others on the subject.
~ Thank you.