Wednesday, July 3, 2013

Working My Nightmare, Three Grim Stories

I know you are familiar with the saying, “Things could be worse.” The response is, “Yes they could, and if you live long enough they will be.”


One of the ladies I worked with had dementia. Not all people with dementia get anxious, severely depressed, violent or overtly sexual but quite a few of them do. This lady spent all day, every day, pacing the floor, almost in a panic, looking for her dead baby.  She would latch on to any passerby and beg them to help her. The obsession wasn’t from an actual experience, just an overwhelming fear her mind had concocted. Even when she became bed bound, she would constantly yell and plead for help. 


One of the gentlemen I worked with had prostate cancer, which is usually treatable. I’m not sure why it progressed the way it did, but when he came to hospice it had metastasized in his spine and he was a quadriplegic. He could breathe on his own, had some ability to swallow and could communicate in short sentences, but nothing else. Flies were an absolute torment and he had to put up with them crawling on his face until someone could come in and swat them.

When I visited, we had a running joke.  He loved football and I know next to nothing about it.  So I would ask him to teach me something about the game and he make a tsk, tsk and say, “You poor baby” expressing his sympathy that I could be so ignorant.   



When he died, I met his son. (I have to clarify that this was a black family living in the South.) As a boy, the son was walking home with his dad when a few white boys started yelling at them and throwing things.  The dad very calmly kept walking and nothing came of it.  Years later, the son, now an adult, was visiting his dad.  They came out of a store, and one of the white boys was panhandling on the sidewalk. The dad gave him a few dollars and they left. The son asked didn’t he know who that was.  The dad told him sure he knows but it isn’t his call to be judge and jury and sometime he might need help without judgment.


The last example isn’t from my personal experience, but it certainly is an illustration of how bad thing can get.


"Huntington's disease is actually one of the most diabolical of all diseases, because it affects everything that makes you human." Nancy Wexler, Professor of Neuropsychology at Columbia University.  It’s a genetic disease that manifests in middle age and slowly takes away cognitive and physical control.  The patient is ultimately paralyzed and chokes to death on saliva.

The father of a family with three boys became extremely aggressive and then violent. Eventually, he was diagnosed with Huntington’s and spent the last few years of his life being totally dependent on his adolescent sons and his wife.  Twenty years later, the oldest son became extremely aggressive and then violent and it wasn’t too much longer before the middle son also displayed symptoms. Their mother tried to care for them at home but in her mid-sixties and with two adult sons requiring total care, she had to put them in a nursing home. Soon after that, the third son was diagnosed with Huntington’s. One day she walked into the nursing home, went to her sons’ room and shot both of them in the head. They had made her promise that she would not let them die like their dad did.

So, why am I sharing these disturbing stories? (A parade of terrifying scenarios that march around in the back of my mind.)  Decline and dependency doesn’t discriminate. Even if nothing catastrophic has happened in your past or you are a genuinely nice person or you make the choice not to live in a condition you consider intolerable, unless you die suddenly in your sleep, you will be dependent.  And maybe, because I find the prospect horrifying, I’m trying to find some normalcy.    


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