JOAN’S BLOG – WEDNESDAY, DECEMBER 9, 2009 – EXPERIENCE IS THE BEST TEACHER

Recently, a friend of mine found out that one of his young relatives has been diagnosed with Asperger’s Syndrome. He and his wife enthusiastically threw themselves into reading and learning all about the syndrome, to help them understand and better interact with their young relative. It is what many of your friends and relatives may have done when they found out about your spouses’ diagnosis of Alzheimer’s Disease. An admirable endeavor, to be sure. However:

During my 25 years in Special Education, I worked with many children and young adults with Asperger’s Syndrome. For the last 5 years, I have lived with a spouse with Alzheimer’s Disease. In both cases, I have been continually reminded of what every professional learns the first year on the job – no amount of books read, lectures attended, or papers written, can compare to the education garnered from “in the trenches” experience.

Nothing I learned in my education classes prepared me for my first week on the job, when a 4-year old, severely autistic little girl growled at me, scaled me like a monkey in a tree, and ended up sitting on my shoulders before I knew what had happened. No amount of reading books on Alzheimer’s Disease prepared me for the day my beloved best friend, lover, and husband of 3 decades, spewed forth raging hate and anger at me, verbally abusing me, insulting me in public, and screaming epithets of virulent rage towards me.

We can give piles of reading material to our relatives and friends in an effort to educate them about Alzheimer’s Disease, but unless they are living with it every hour of every day, they will never truly understand it.

This same friend who is immersing himself in Asperger’s reading, is having a terrible time understanding and accepting what is happening to his friend of 60 years – my husband Sid. He has seen end stage Alzheimer’s, but never the beginning and middle. He is frustrated and sad because “Sid doesn’t know anything I ask him. He has to ask Joan everything.” He is upset because “ Joan is drugging Sid. He looks blank.” He was even more distressed when I told him that I was not “drugging” Sid. He looks blank because sometimes he is. That is Alzheimer’s Disease.

The simple fact is that no matter how much we explain, how much reading material we dispense, how much we write and talk, no one is ever going to understand Alzheimer’s Disease unless, sadly, they gain first hand knowledge from living with it.

My dear, 91 year old father, who is as wise as his years, and has the cognitive ability of a man half his age, said to me – “I can say I know how you feel and what you are going through, but I don’t know. I couldn’t possibly know because I am not going through it.” Those words gave me more comfort than anything else that has been said to me during my five years with this disease.

I have come to the conclusion that it is a waste of time and energy to stress over others not understanding what our spouses are experiencing or what we as caregivers are going through. It takes time away from trying to enjoy, with our spouses, whatever bit of life we are able.

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 ©Copyright 2009 Joan Gershman 
The Alzheimer Spouse LLC
2009 All Rights Reserved

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