Prejudices Projected Toward Persons with Dementia

I have made a whole career out of trying to change hearts and minds about disabilities. Special Education has taught me that even within a close family unit it cannot be done. Resentment and frustration abound. Disassociation with the person afflicted. This merges into inattention and ignorance creating a dangerous combination of practices and attitudes that create a toxic lining environment in no time at all. It begins with the “Diagnosis”. Eyes glaze over and nothing is understood beyond the “Dementia” word. That’s the problem. Even Doctors do it! The solution I found is in me. Being the one diagnosed with Posterior Cortical Atrophy (Brain Stuff) to take control of my life and not depend on others to do it for me. Oh, I allow them to help, but I will not depend on them. It’s not safe.

I can still get things done although I have to do them differently. MY working environment is kept free of chaos, clutter and noise. Visual Pollution is the worst. My Visual Center is quite broke and that is where the brain is dying. A PET scan shows big holes where there should be a brain. I cannot trust what I see as it’s just my brain sending the wrong images to the cortex where it all gets scrambled up anyway. Wall/ no wall/ oops! I have learned to do things differently and have found it to be actually better than using my vision. I just have to protect my environment from chaos and confusion.

This alone places me in another world. Star Trek (Chaos on the Bridge), I have to avoid Criminal Minds altogether! Drama much more intense than Twin Peaks is impossible for me. That leaves me what? Jeff-Fa Fa Dunham? When I’m probably better off with Abbot and Costello and Jack Benny. Shows that don’t jerk me around are best. Well written pieces that I can follow without seeing.

Family members are another story. Few rise to the challenge.

Governments try to keep the family members at home cared for family for as long as possible. Hospice Centers provide help, training and a list of providers you can interview. Ongoing care is cost prohibitive. It’s not fair. The help which is provided enables the family to adjust more readily to the demands of home care. That’s about it. It does take a while to get an attitude. Get used to the idea and move on.

I have struggled with the idea of presenting an article verging on the negative side of Dementia and how to do it for a long time. I have decided it is healthy to recognize and name the monster in order to fight it. Constantly putting a happy face on it sends the wrong message. Individuals respond differently to the diagnosis and medications help, but they are not a cure. I believe in the old Nursing Axiom; “ For every Pill there is a Practice” I think it was coined by the founder of the Red Cross. After a career of actually doing it I can’t argue with it. I only ever found the pills to help, it took a lot of creativity to fix the other things that were wrong. Chaos ruled the house that didn’t. Of course one has to actually believe that God does not make junk.

Is ‘happiness’ an emotion or is it an attitude? Do I wake up being happy or is it a practice? Since there is really something to anti-depression pills allowing happiness to reappear, there is the probability of a happy pill, happy diet and happy place. My own experiences have shown me that in order to maintain a happy existence I need the whole combination and then I really have to work at it. The most unhappy job in the world is being a soldier in a foxhole getting shot at by both sides. By saving up all the candy bars in the rations pack I was able to keep things together by pulling them out and lining them up. I found that if I called them John Wayne Bars they had extra power. Just before a mission I would eat one and then go over the top in the proper mental state. It worked. The proper mental state was singing the “They love me, they love me not” song. They love me “Bang! Bang!” “They love me NOT!” DUCK ~ “Zip!” “Zing!” “Thud!” ~ days would be categorized into one, two or three John Wayne Bar days. It was the same for when I retired from the Military and went into nursing. Still lots of action but I had to give up the John Wayne Bars in order to keep from getting any fatter than necessary. I found that there was always something remarkable going on outside the window and that looking out the window was an excellent way to recharge and be ready for the nest moment somebody needed my help. Soon I started bringing a camera to capture some of that wild Canary that always sits one the branch just outside, or the first Lilacs of Spring, and maybe a Muscle Car or two. It wasn’t long before the Dementia patients I was taking care of would indicate something they wanted a picture of and it was usually something pretty “cool!” Soon everybody was looking out the window and things got a lot happier during the day. I guess wherever you go and whatever you do there is that mysterious echo.

“WELL, Yahah! PILGRIM!

   Sincerely Cecil

tags: PCA, Posterior Cortical Atrophy, Stigma

Cecil’s index page for other entries is at https://truthfulkindness.com/index-persons-with-dementia-pwd/cecil-ristow/ .

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