This very insightful article, by John Royer, our PSP correspondent, argues that PSP can’t take your loved one away if you don’t let it.
I’ve been noticing that a lot of people say that their spouse or parent is gone
because they cannot speak, they cannot communicate. I think it is a mistake to assume that. I can’t prove that with scientific fact. All I can do is tell you my feelings on the subject. Let me tell you why.
My mom died of Alzheimer’s disease and at the end her communications were pitiful. She could speak but she repeated herself over and over again and could not concentrate on what I was saying. I thought her mind was totally gone and many people had stopped seeing her because of her condition. In other words, she was gone mentally.
From a conversational point of view, that was true. Many PSP patients move beyond the ability to move their hand on a whiteboard or on a computer-pad-for-the-handicapped to complete immobility.
It occurred to me one day that possibly her sense of humor was still intact. Like sadness and anger it is a basic emotion.
I tried an experiment.
We were sitting at the end of a hallway by a window in the nursing home and an idea occurred to me. I was going to become outrageous. A smile formed on my face and she stared at me in bewilderment.
“Mom, do you know how I got here? I flew in on my 747 jet and parked outside the window. The door was too far off the ground so I had to open it and crawl through the window.”
She looked at me and started laughing. I hadn’t seen her smile about anything for years. She always had this blank, serious look on her face.
This was a good idea, I thought to myself.
Serious doesn’t work.
She looked down the hall and the smile faded. She started to stare and she was disturbed.
“That woman is mean. She always tells me to move no matter where I sit and I don’t like her. She makes me very unhappy.”
Another basic emotion had surfaced and it made sense.
The woman looked mean and walked new right up to her and spoke in a condescending manner.
“That chair is mine and I want to sit in it.” I took my mother’s hand to stop her from standing up. She looked frightened.
I decided what to do quickly.
“I believe you are mistaken.” I said to her. “That chair is mine and my mother can sit upon it. In fact I own the whole building and I have a jet parked outside. As a matter of fact, I own the whole city. I am very wealthy.” I had a very serious look upon my face as I said these words while looking straight at her.
She got a very worried look and thought for a few seconds.
We she was very timid when she asked if she could stay. She couldn’t look at my mother anymore.
I said that she was certainly welcome to stay as long as she wished. She looked very thankful and turned and wandered down the hall. She had a new opinion of my mother and a decidedly strong impression of me. Until that time, my mother had been just another patient to be scorned. Now she was someone to be respected.
No harm had been done. The woman was satisfied that she had a right to live there and would vaguely remember not to bully my mother. I sincerely hope that the woman would not regress to her former actions. I kind of felt that she would remember.
When the woman turned the corner, my mother started laughing again. I had fooled both of them and no harm had been done.
If she had been bedridden and unable to speak, I feel that I still have gotten to her with humor. I left that day in a very good mood and hoped that my mother would not forget her brief happiness that day.
Funny is good.
PSP and Alzheimer’s disease are closely related as neurological diseases of the brain. Personally, I feel that humor can work on either type of patient. Even if they can’t move they can smile. Look at Stephen Hawking. The only difference is that his keen brain still works at a normal level. My mother’s unfortunately had degenerated to basic levels.
When my PSP has destroyed me enough that I can’t move, I hope that people remember that I’m still in there but I’m quiet.
I will appreciate outrageously comical jokes and lies that are outrageous and perhaps someone to read a book to me. If I might not be able to smile I will at least be able to blink once for yesand blink twice for no. I don’t believe the eyelids are affected. At least I hope they are not.
So remember that your loved one is still in there, encased in a useless body and hoping for you to understand and to generate stimulating conversation even if it is one-sided.
Outrageous lies would be appreciated greatly.
PSP destroys you only if you let it. The human spirit is separate from the body and eventually leaves it when the body dies.
I told my wife that if I precede her in crossing over to the other side, I will build her a grand house which she will never have to clean.
That was an appealing thought to her.
Remember that funny is good.
So are lies…