Observations from the Invisibility Cloak

When I was 28 and writing poetry, I wrote a poem lamenting the feeling that I was invisible because I was no longer the youngest, cutest thing on the block --- and I had become a mother. Now I'm in my sixties and really invisible. And I like it!

Friday, April 5, 2013

Is it real or is it ..... chemistry?



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This is my mother, Nancy Lou Ewers Bundy. She was born in 1930. She doesn't know that anymore, not even her name. I visit her several times a week, but I don't know who she thinks I am. Sometimes she calls me Margaret, her big sister's name. I consider that a compliment. Most of the time she just seems to know that I'm someone familiar, like the women who are her caregivers at the Alzheimer's Unit where she lives. I'm the one with the chocolate mint in my pocket.

Every visit is different. Today she was not very alert. She moved and spoke as though she were underwater, very slowly with a WA-WA quality to it. It took her 15 minutes to drink 2 ounces of orange juice in teeny, tiny sips. I read her a new book, an oversize children's picture book. Sometimes she can still read words, but today all she did was point to the pictures and look away. Whenever I touched her, she startled and cried out.

As I watched her sit in the wheelchair looking around, her lips moving in small, stuttering words that only she knew, I wondered for the millionth time what it is like to be inside of her, inside her addled mind. She used to read everything she could, she had a wicked sense of humor and unbounding good cheer. Most of the time, her good cheer is still in evidence, but since she can't express herself, she can't really share the things that amuse or perplex her.

At one point today she fastened her attention on something only she could see. She touched it and talked about it, rubbed it in her hand and finally handed it off to me and grinned. I have no idea what gift she gave me, but you can be sure I said thank you.

A long, long time ago I used to attempt to expand my consciousness with chemicals. I discovered that different substances produced different effects, some of which I liked and others which I didn't. I wondered today if the place where mama lives is similar to the places I induced by artificial means, 40 years ago. 

I scare myself by worrying about my odds of following in the footsteps of my demented parents.  From the outside it looks like one of the worst things I can imagine, and it takes SO LONG to reach the end of that path. But what if it's not all that bad? What if it's like the pleasant oblivion of a really long acid trip ---- without the scary stuff? I know it's a crap shoot. Dad's dementia seemed to involve a lot of visual and auditory hallucinations, many of which scared him. (These days he might have been diagnosed with Lewy Body dementia.) But mom, even when she's interacting with people or things that I can't see, doesn't seem to be disturbed or afraid. In fact, she spends an inordinate amount of time giggling to herself. Maybe she's flooded with dopamine and seratonin and oxytocin and whatever other happy brain chemicals there are. 

It doesn't HAVE to be tragic, maybe. I hope. For her sake. And mine.

4 comments:

  1. Kathy I have worked with Alzheimer and dementia patience and I can relate to your mom's experience and yours. No easy answers, as long as she feels loved and safe you will have do a great job of being a wonderful daughter.

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    1. The rewards are knowing that we are all doing what we can for her. Hospice is a wonderful help, as well.

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  2. Terry Wallace FryeApril 6, 2013 at 9:49 AM

    Kathy, I think of you and your family often. I know all too well the thoughts and worries you have where Mutti is concerned and for your own future. I hope it helps to know that friends are thinking of you and holding you their prayers. Daddy is not as advanced in his AD but I ponder many of the same things...
    I know it is a difficult prayer, but mine is for peace for Mutti and for you and your family - that she suffers not, that she IS in that happy place, that she is calm, and that when that time comes that she is not she can go peacefully to her reward!

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    1. Thanks, Terry. I know you are on a similar path and none of it is easy.

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