In a recent post I wrote about isolating ones self from things that can cause unnecessary worry such as television news. However I was not suggesting overall isolation away from everything because that seems to happen as part of the course of the progression of the disease. It takes effort to shave and dress appropriately and be ready on time for an appointment and that creates stress and that ups the PD at exactly the wrong time. Preparing for a dinner at home with guests does the same thing, even if it is just family.
Some People avoid uncomfortable situations that they can not help in and do not know what to say or how to treat the situation and tend to reduce the incidence of being in that situation. Therefore seeing old friends becomes infreakunt and the patient is left alone. Family is the same as old friends and if you go to a family birthday party for one of them they are concerned about you but not enough to actually let you talk and listen to you more than 5 seconds.
Believe it or not, old people get lonely and desire human contact and conversation even though they do not look like it. The Parkinsons mask, the lack of expression, the soft voice, the inability to remember names of anything or anyone, difficulty hearing and the slowness of speech together results in this old guy who used to carry a conversation being mute.
How do you handle that, because I do not do it well. I do not carry a cellphone to be constantly looking at like everyone else, so even when the conversation reaches a silent moment they are too busy to talk to me.
The boss at the company I spent a lifetime at had a framed statement on his wall and it said
"Have you seen my team ?
which way did they go?
I have to find them
I am their leader."
Tell me, how do you handle it, any tricks other than accidently dropping $10 bills.
Written by
Gymsack
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I’m so sorry that you are having these struggles. It sounds very difficult! I’m glad that you shared your feelings. Life has been lonely a lot for me also in the last 5 years. For over 4 of them I was taking care of my mother, I am 71 now. I felt like almost no one understood my situation. Probably not too many understand caretaking, but fewer even understand doing it not being well oneself. They seemed sometimes to think my life was somehow business as usual. I could write a book! Your feelings are valid and I pray that you find comfort and understanding! Sending love!
I have seen this seen as a young child. I was brought up by my grandparents and my rather youthful middle aged grandmother often took me when she visited older family and friends. Luckily she told me funny stories about these people; of their glory days. I then had something to talk to them and they enjoyed it.
Today I am the extended family chonicler helped by my nonageranian mother. I know the criss cross complicated connections in a community that has changed its traditinal matrilineal linage nomenenclature . Even though I live in a different culture with far less inter generational awareness I find the connection within me.
Yet I recoiled against my own image at the time of accepting a diagnosis. My doctor colleagues could not look me in the eye when they spoke to me. They mumbled platitudes.
I also had a socially crippling year with a frozen shoulder whilst living alone in a big city. I was too embarrassed to get a cup of coffee.
Then came the dyskinesias. As mst people here know they get aggravated when you are trying to not be noticed in public.
Gradually I decided to go back to work, got a lot of respect from new colleagues and others. Now I even have a few new "friends" amongst the teenagers who use the public transport systems to high school.
Kind waitresses bring me extra cutlery and mop up spilled food. Somedays it is an effort to talk to them. They dont expect tips.
Again the same grandmother who showed me how old, frail people mattered tried her best to stay connected when dementia hit her in the last 3 years of her life. We missed her quicksilver witty responses but she did not know that.
To me the secret is to try to remain connected to the world even if it is an effort. When you no longer can, it wont matter to you as you will not know that.
Take heart that you still have your place in the universe. You have reached out to many. Bravo !
Sorry Gioc , you lost me , I am not sure I understand. Are you saying use gestures or body language or hand movements to augment the speech because that is a good idea. I will try that the next time I have something important to say and have not yet forgotten what it was.
I prepared a special yeast bread dough and turned it into 3 pans of Cinimine buns . But by the time it came out of the oven I was completely exhausted and did not have the ability to taste one and went to bed. This morning I am enjoying the reward for a bit of discomfort. yes it was worth it just as most things are worth it, but it is important to pace yourself and plan ahead every move you will have to make.
that's right Gymbag, observe the little children, you will see how much communication they bring with a simple gesture or with a look. It is a communication that is not made of words, but is conceptual, emotional and affective of great intensity.
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