I have been watching my mother struggle with Alzheimer's for several years now. It wasn't too terrible until this past year. That's when everything became insane.
She is now violent, delusional, and is hallucinating. She is presently in a neuro-psych hospital three hours away. Put simply, it is a disaster. I cry, pray and worry. Repeat...each and every day.
This leads me to think about the future and if I ( or someone I love) will someday have this horrible and terrifying illness. I think about what it will do to my family, my husband, my children and anyone else who may happen to care about me.
Would it be easier if I knew ahead of time? Would it help to be able to prepare myself and my family? How would one prepare? Of course, education would be essential. Finding good doctors and learning which facilities are good and which ones are not, in case one is needed.
There are the legal matters as well. P.O.A papers, living wills and all that good stuff. It would also be important to talk to family about my wishes for the future..and don't forget final wishes. Burial or cremation? These things should always be in place, but when we will be losing our ability to reason and make decisions, it becomes even more important.
How would we prepare mentally and emotionally? We should probably research support groups in the area and make sure we have a support system in place, including friends, family and professionals.
Wow! This sounds like a great deal of work. I also wonder what, if anything, would be different if we knew this was coming. What if we had known she would have such a problem with behaviors?
Actually, we have talked about this. We would have moved her back to Illinois sooner (my parents were living in Missouri ). We would have researched hospitals and doctors sooner...and so on.
Would things be different today if we had been able to prepare more? I have no idea. My grandma had Alzheimer's as well, but she was not violent. She was moved to a good facility and lived there until she died with very little incident. We have not been that lucky with our mom.
So, back to the original question...I honestly do not have an answer. I am afraid that if I knew I would live my life differently and perhaps not live it fully. There are those that have instructed family not to allow them to live "like this". Our hands are tied on this though;at least legally.
My daughter recently wrote a blog that discussed this very issue. Should we be able to plan to be euthanized if we know Alzheimer's is in our future? Of course, this would definitely have to be planned ahead of time as we cannot legally make decisions once we have been diagnosed with dementia.
I wonder if life is just too short to spend time planning for the worst possible scenarios. What do you think?
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Filed under: Alzheimer's