I’ve talked to many caregivers over the years and some have lives they plan to go back to. This is almost a detour in their road. But some wonder with a bit of trepidation what life they will piece together when it’s all over.
Comments closedTag: Alzheimer’s
Genetic testing for Alzheimer’s currently seems to be an incomplete science. For these reasons I’ve never considered genetic testing.
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Clearly I’m wrestling with a sense of falling short as my mother’s caregiver. Am I being fair to myself? When I think about all I should do, because I love her, there is no way that I can do everything I expect of myself.
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I doubt my mother ever feels a sense of loss when I leave. For me though, it still hurts sometimes because she doesn’t remember me or know that I was just there. An Alzheimer’s patient lives entirely in what he or she sees in the moment. I know that she loves having me in her world while I’m there. When I sit with my arm around her, she gets as close as possible. But once I duck out of her sight, I don’t exist to her. She does not miss me.
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I cannot fathom that there will be a noticeable change in her from day to day. But as I’m learning, there are variables that I don’t understand and no one can predict and so, this notion of day to day consistency is just an invitation for heartbreak.
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My father was declining my help. It was not my choice at that time to do nothing but also not my right to impose or interfere. I also did not want to alienate my father. So on I went waiting for things to fall apart. It was agonizing.
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Every once in a while my mother reminds me that she is not just a late stage Alzheimer’s patient. She is an adult woman who still has the capacity to enjoy elements of living. One Friday night I saw a look of contentment on her face. Her expression conveyed a satisfaction that she was present and thoroughly enjoying the moment.
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I believe that even though mom suffers from late stage Alzheimer’s, she can still subtly express herself with some truth and intention. She still communicates with me subtly but very clearly in non-verbal ways when she is present. The mother I’ve always known is still there, although blurry or distant or fragmented. Perhaps now she is living more from a place of her own truth than she ever has before.
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The best quality time is simple quality time. In the past, I wanted everything to be perfect. It seemed important to have the right music on the radio, serve the right food on the right dishes or take her to the right ice cream stand. I wanted mom to have fun with me. For some strange reason, I thought all these extraneous details made our time together better. Truthfully, nothing else matters if we can just look at each other and smile.
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During one visit, I observed mom’s escalating separation anxiety and my father’s response to her anxiety. Any time he left the house, my mother paced and worried. She paced nervously all the while looking out the windows and opening the front door repeatedly to see if his car pulled in. She could get locked out in the heat or wander off and try to find him. And at his age, I worried that something could happen to him and he wouldn’t get home to her.
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