What is Normal in Alzheimer’s Disease
What is normal?
Normal is like Beauty, all in the eyes of the beholder.
When I was a caregiver for my mother who had Alzheimer’s disease, I saw two normal worlds between us, hers and mine. Once I acknowledged that her world was as normal to her as mine was to me, I stopped using reason and logic to bring her into my world. I embraced the new person who was evolving right before my eyes and stopped denying the person that she was. I stopped thinking my world was the only normal one.
When my mother saw a “black thing” coming out of a painting on her bedroom wall, I quickly put it away saying, “I’ll take it away so you won’t see the black thing.” I dignified her world by not denying what she saw. I had to believe, there is a window to her mind that opens now and then, allowing her to know the world in which she has been reduced to live in, has become strange and scary. To remind her of this can be cruel and dehumanizing.
My mother, like Elaine Okazaki’s mother hallucinated of seeing an infant in bed with her. Look at how Elaine entered her mother’s world from an excerpt described in her poem ” Humph, I Say”
…”she shouted about that girl and that man in bed with her.
“Where’s the man?” I stammer.
“Next to me, Can’t you see?”
“And where is the girl?”
“Can’t you see? Against the wall!”
“Well,” I say, “Let the man sleep against the wall.
And put the girl next to you.”
“Oh, okay,” she utters.
Back to bed……”
from Breaking the Silence: A Caregiver’s Voice
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Mary, caregiver for her aunt, discovered caregiving to be a whole different world once she accepted her aunt’s world.
“My aunt has an imaginary lover. We got into many confrontations when I told her, ‘What lover? I don’t see anyone here.’ She’d shout back, ‘Can’t you see? He’s right here?’ And we’d go back and forth like a pendulum, creating such frustration in both of us. Once I accepted her world and told her “Wow, Auntie, he’s pretty good looking, huh?” past animosities ended and we got along fine. Now when I visit her, I also visit her lover for he’s always there.”
People afflicted with dementia often turn to babbling in later stages of the disease. Have we thought that maybe we are the ones with language deficiency? Perhaps if we learn to see through their eyes and hear through their ears, we will learn more of their world instead of being stuck in our own. This may lead us to find a way to give care with less conflict. Once we believe both worlds are “normal”, once we open the doors to both our worlds, we eliminate the Tug of War that often erupts between two parties. By doing so ,we dignify the new person who is evolving and by so doing, we dignify ourselves.
A loved one says, “John came to see me today.” In your world, John has been dead for over ten years. Enter her world and a comment similar to, “Did you have a good visit?” will bring peace and dignity to that moment. To argue and tell her, “John is dead, Mom. You must have had a dream,” drops a jagged rock in the middle of that stream that was flowing so smoothly until you arrived.
But what of our world? Are our loved ones incapable of entering our world? At certain stages of the disease, they will not be able to, not with logic and reason, but there is a place in our world that offers them a front row seat: dining in restaurants or around family gatherings, feeling the wind on their faces, hearing happy voices of family, feeling love and affection through human touch, being connected through conversations, even if they eventually are reduced to monologues. Our world offers the humanity of what it means to be human.
Enjoy both worlds for we are all as normal as we can be.
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