Jul 26, 2010

Alzheimer's Disease Who Suffered?

By Max Wallack
Alzheimer's Reading Room

I think Great Grams clearly did suffer. There were times when she cried,
“I don’t even know who I am!”
Her biggest fears were realized when she had to be placed in an Alzheimer’s ward for the last few months of her life, and I would say that, yes, she was aware of her suffering.

Even without speaking, she would motion to us that she wanted to leave with us. She had been a fearful person her whole life, and she was clearly terrified of everyone at the facility, even though they were all very kind to her.

I also think my grandmother suffered.

When someone is continually sleep deprived, that is very tough on one’s health. My grandmother also found it difficult being shadowed 24-7.

My grandmother had to perform physical tasks that she really wasn’t up to. For example, my grandmother required Carpal Tunnel Surgery from pushing the wheelchair. Great Grams had had a delusional episode and was in the geriatric psych ward when grandma had the Carpal Tunnel Surgery. Then, several days later Great Grams was released and sent home. The big problem was that Great Grams contracted the Noro Virus in the hospital ward. Grandma had to clean and clean and clean Great Grams using the hand that had surgery only a week earlier. I think it was clear that both my grandmother and Great Grams were suffering.

A more interesting question is whether I suffered in helping care for Great Grams. I think, at the time, I probably was “suffering” somewhat.

Probably the worst thing for me was watching the ill effects on my grandmother. That made me want to try and help more and more. We tried to live our lives as normally as possible. Instead of staying at home, we went places and took Great Grams with us. We took care of her as a family group. I developed a great sense of responsibility for Great Grams. I was always aware of where she was and what she was doing. If I couldn’t be with her, I made sure someone else was.

I guess it comes down to the definition of suffering. Is it physical pain? Mental pain? Unhappiness?

Clearly, I witnessed and experienced a lot of unhappiness . Grandma and Great Grams experienced physical and mental pain. I think we did “suffer”. However, I think that a certain strength grows out of overcoming suffering. A certain feeling of accomplishment comes out of knowing you are doing the right thing for yourself and for others. In other words, after the “suffering” comes fulfillment and a desire to reach out and help others going through the difficult times.

My experiences with Great Grams profoundly influenced my life, and, hopefully I will pass on what I have learned along the way. Hopefully, I will spend many decades helping Alzheimer’s patients and their families.

Bob is unusual because he has already reached the stage of fulfillment and helping others while still being an Alzheimer's caregiver.

Max Wallack is a student at Boston University Academy. His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

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Original content Max Wallack, the Alzheimer's Reading Room