I watched the movie Still Alice yesterday. I read the book a few years ago and while it wasn’t based on a true story, Lisa Genova’s research and resulting story is an excellent first person account of life with Alzheimer’s. A movie can never catch the full flavor of a book but the movie did provide insight into the mind of a loved one with Alzheimer’s.
The movie also touched very lightly on the family dynamic – something I’ve learned from firsthand experience in not only my own but others close to me as well. Seeing how others are handling it, I consider myself a very blessed person to have such wonderful siblings!
Some people seem to think that Alzheimer’s, or any form of dementia, appears overnight. They say, “It can’t be dementia because she knows who we are” or “He doesn’t have Alzheimer’s because he can tell you what he did today”.
That’s not the case, however. Dementia builds up little by little and differently in different people. I’ve told about Mom’s losses over time such as finding the word she wants to say, forgetting how to sew, and more. For Daddy, it was forgetting names and missing meetings. In either case it was nothing noticeable at first and developed over time.
In the movie, Alice was a world renowned professor of linguistics – a lover of words – and the loss of her words was devastating to her. It was only the beginning of what she would lose and, while the book played it out more completely, the movie did manage to show how the stages progressed.
As you may imagine, the slow progression of the disease may cause family members to disagree about what’s happening with their loved one. I find that to be a key topic on the support forums and at our local Alzheimer’s support group. The gulf between the family members can widen and seem impossible to close.
Quite often it is the caregiver complaining that others in the family don’t help or don’t get involved. The caregiver assumes that no one else cares about them or the loved one and while that may sometimes be the case, I think quite often there is more to the story.
There are also times when a family member is upset that the caregiver won’t discuss the situation with an open mind and lashes out at them so they back away. Again, there may be more to the story.
Neither situation helps anyone involved. There is probably common middle ground but getting there may be difficult to navigate when the caregiver is in the trenches and the others feel outside and unheard.
As I’ve said before, my family is great. I communicate through this blog and when I need to communicate quickly or in more detail, I send an email to them all. They were supportive when Mom was living with us and continue to be since she has been living at the ALF. My sister would spend weekends with her when she lived here so that we could get some time away and now she visits Mom several nights a week, helping Mom eat her dinner and keeping another eye on her care.
Do my brothers visit like my sister and I? No, but my oldest brother has overall POA and handles all of Mom’s finances and I know all of them will be there if we need them and because of that, I feel comfortable in my role overseeing Mom’s care. Although I make all of the day to day decisions for her care, I’m not alone in any decision that I want or need help on. I always know my sister and my brothers are there.
Mom was our example to follow. She did it well. She did everything in Daddy’s best interest and accepted it when we had to bring something to her attention. For example, she wasn’t happy when I told her Daddy couldn’t drive anymore but she had no experience driving so she accepted my opinion and Daddy stopped driving.
I wish everyone’s family would be like mine. That isn’t the case but I do pray that others will try to find common ground.
|She's telling me a great story!|