It's Sunday in Miami and the weather is quite unusual for us this time of year. It our dry season yet it has been raining just about every day. Lately we have experienced more cold spells than I can remember in the 32 years that I have taken up residence here. Today the air is crisp and the wind is blowing fiercely. I am on my way to visit my mother at the assisted living facility in Homestead. She is 84 years old and hardly knows who I am or where she now resides.
Two months ago my sister placed her here due to the stress she has been living with for the past five years. Living with a relative with dementia 24/7 is not an easy task. I give great credit to her for taking care of our mother day to day for all this time. As for me I have it easy, I make the weekly trip to see her, to hold her and to touch her. For the most past she thinks that she is now back in her birthplace, in Trinidad.
Our conversations are quite disjointed, she has no control over her thought processes. The words just don't come. At this point she doesn't know what day it is or where she is. Sometimes she can get it together and ask fairly intelligent questions, like how are the boys, other times it is a stream of words with no definite beginning or ending. Whatever comes out, comes out. It is really mind blowing to witness. This was a very powerful woman. In her prime she was the Executive Secretary to six union presidents, beginning with the TWU founder Michael J Quill. At times she talks about union affairs as if she is still working to set up a convention etc. Other times she can express aggravation at some imaginary person, who is doing something that she is unable to fully articulate.
Most of her fellow residences at the facility have a tactile fascination. They touch everything as if they never saw it before, just like little children. You can see them as they focus on an object; it could be a napkin or the fold in your garment, anything. They reach over take a hold of the object and examine it. They touch, feel and rub it. Then suddenly they'll turn their attention to something else only to return to the very same object and touch feel and rub all over again.
One of the most disturbing elements that I've had to cope with recently is the great difficulty it takes to make her laugh. Just a few months ago I could say silly things and she would laugh like a little girl. We'd play dumb games just to past the time, but lately nothing seems to work. She just can't comprehend the words that I say. For the past two years I have been telling her silly jokes, and she'd enjoy it. Even when she was noticeable agitated I could say something silly and put a smile on her face. Like I'd tell her that on my way to see her I almost ran over a really big spider. When she asked how big I “d say HUGE, as big as a dog almost three feet tall. She'd laugh and say that's not true. And we'd both have a good laugh. Or I'd ask her if she ever had fish foot soup. “ Fish foot soup” she'd say, “don't be silly fish don't have feet.” Lately nothing works, besides losing her train of though she has lost her sense of humor.
At the facility I watch her, I take pictures of her and I listen to her words, nothing makes sense anymore. Sometimes she talks about her mother. She says her mother wants her to come home but she does not know how to get there. Yes she wants to go home, but there is no clear path to get there. Oh how we'd like to help expedite her trip back home to her mother, but unfortunenately we can't.
As I leave the facility and the odor of urine, I wish that one day soon she would quietly pass on to the other side. Every time I look at her I don't see that vivacious woman that brought me up, there is but a shadow of her being in that body. She maybe alive but she has no ability to consciously live.
In my philosophical studies I learned that life is a conversation. My mother has no real conversation. She babbles and it is painful to watch. Life without consciousness is not the life that we bargained for. Our constitution says: Life, liberty and the pursuit of happiness, anything else is basically a prison sentence. Can you imagine being a prisoner in your own body? That is the life with dementia. So sad, so sad….
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