Isn’t it strange how someone or a television show can take you back to a memory; a moment in time when you feel the hurt and see the sorrow in their eyes.
In 2007, I watched a sequence of television shows about Alzheimer’s Disease, and then I saw Muhammad Ali watch his daughter Laila, dance on “Dancing with the Stars”.
Muhammad’s presence had a huge impact on me and will still bring tears to my eyes, he reminded me of my mother.
Muhammad Ali was unable to show any emotions or speak any words, but his daughter knew he cared.
At that moment of sadness, I thought there has to be a way to reach those suffering from memory loss conditions.
My mother passed away several years before the terms of Alzheimer’s and Dementia were common, suddenly all of her actions, symptoms, frustrations and struggles were fresh in my mind.
Within a few days I started researching “Activity Needs” for Alzheimer’s by calling Memory Treatment Centers and talking with Activity Directors across USA.
My background was in graphic/web design and marketing, because of this, I felt I could design some activities; without this background, I could not afford to hire it done.
Reflections of the past
Mother’s physical capabilities easily done at one time, were taken away from her in a second. Her thought patterns that had flowed easily before had been intercepted, now simple words could not be uttered and she was paralyzed on the right side.
Mother had a massive stroke at age 50 following surgery, unfortunately many small strokes and memory loss followed.
This was a jolt for my father, five children and especially my lovely mother. We could not hear her words but we could see the fear in her eyes.
I am not a doctor only a close observer.
I truly believe when someone is stricken with a stroke, Alzheimer’s or dementia they are prisoners within themselves. I feel this is why they have outbursts of anger and frustration.
This is sad not only for the patient, but their loved ones standing by their side and the caregivers who watch them closely. I’m not sure who suffers most, the patient or the observer.
We cannot communicate with our loved ones the way we used to and must learn different ways.
My father cared for mother many years before she went into a care center. It was very difficult for him, but I never heard him complain and she was difficult at times, he was protective of her behavior.
During this time I watched my mother became very depressed and angry towards my father. She began to resent the fact that he had to do many things for her.
He was her hands, her feet and her voice at times. She did not like it, and she never stopped trying. . . she was a survivor. More than anything she wanted to be the way she used to be.
I’m sure they both had a straight beam to heaven when they died.
It was difficult for her to convey what she wanted and became frustrated when we could not understand. Trying to help, we would guess what she was trying to say and this upset her even more.
I know she was frustrated and angry because of her condition and we had to accept that fact, Mother was never going to be the way she used to be.
Her memory got progressively worse, at times she would remember things in the far past but not remember turning the stove on. She needed to be watched very carefully for her own safety and those around her.
She had all the mood swings and sometimes they would come very quickly, it was difficult to keep her occupied besides just sitting in front of the TV watching soaps or shadows.
There were no age appropriate activities for her to do and she felt insulted when given a child’s painting book or puzzle.
I also know, if I would have been in her shoes, I would have felt the same way and probably acted the same way or perhaps worse.
Today I understand, when we are young, we are trying to cope and reacting to the situation.
The big QUESTION?
What is difficult for me to understand is WHY years later these patient needs have never been met.
After contacting Activity Directors throughout the state of Illinois, I discovered they all had the same needs, then I contacted Activity Directors in other states and I heard the same issues.
I was shocked and excited at the same time, because I realized I had found “a need”.
Now it was up to me to fill it: age appropriate, stimulate conversations; the patients enjoyed puzzles but there weren’t any they could easily do.
They gave me the blueprint all I had to do was follow it.
When I was a child, mother always had a card table up with a puzzle of many small pieces on it. Both of my parents worked on it, but mom enjoyed the challenge more and puzzles was one activity she missed doing.
After her stroke the pieces were too small and too many for her to complete. She would become frustrated and never completed one again. If there was a puzzle that had few pieces it was a child’s puzzle and she didn’t like those, she was not a child.
She would have handled these puzzle pieces easily and would have been successful with both the puzzles and card games.