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.
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| She's telling me a great story! |
