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Are people ‘suffering’ from Alzheimer’s disease’?

by Vicki de Klerk-Rubin

As a psycho-geriatric nurse specialized in working with people who have #Alzheimer’s disease and other dementias, I constantly hear the word ‘suffering’ used to describe them. The professionals I train feel pity for their suffering and the families I coach worry about their parents’ psychological pain. And I wonder who is really doing the suffering.

I know a lot of family members who suffer because their mothers or fathers have changed and are no longer the people they were. They hurt when their relative no longer recognizes them or fulfills the role they once played. Shelly was 55 years old when her daughter-caretaker called me in to help the family understand what was going on. Shelly had all the classic characteristics of early onset Alzheimer’s disease: severe short term memory loss, a change in personality, difficulty focusing on anything, restlessness and she was young – about my age. Within one minute I made contact with her by getting close, making eye contact and calibrating her movements and sounds. I asked her how she was doing and what made her happy. We began singing old, favorite songs and after 5 minutes, she moved on to other activities. Talking to her family however was a much more painful situation. Shelly’s children needed to know what was going on and when I told them, they cried. What was hard to accept was that they couldn’t change their mother; she was unable to be corrected or brought back to our reality. She was not turning into a child; she was turning into someone else. No medicine would help. They simply had to accept Shelly as she was and know that she would withdraw inward as the disease progressed. Knowing that she would stop talking soon and lose the ability to function made the pain worse. I could only suggest that they use the time they had as best they could and to continue their loving relationships by accepting their mother as she was in the moment and try to enter into her world. No game-playing or pretending, but understanding that emotions and needs were the driving forces in everything she did now.

Family #caregivers suffer with feelings of loss even though the person is physically still present.

I have seen people with early onset #Alzheimer’s suffer in the beginning, when they first realize what is going on. It’s like receiving any awful, life-grabbing diagnosis, like cancer or MS. It takes awhile to process that and find a way forward – or not. Many people fight it and are dreadfully unhappy for a long time. And there are many people who find a way to integrate the disease into their lives and move on in a way that gives some joy or meaning to their lives.

My step father has late onset #Alzheimer’s disease and I’ve never seen him happier. He doesn’t know the day or the date and he is often confused about where he is but that doesn’t seem to matter to him. He has his personal world and is seemingly quite comfortable there. He has taken his memory loss in stride and says, ‘I don’t remember’ often with a chuckle. Our relationship has never been so good. I know his reference points; I know the songs he loves to hear and it’s almost always a pleasure talking with him. He responds to my voice on the telephone with joy, always saying the same thing, “you sound like you’re full of pep.” And when I don’t know what to ask him or what to talk about, I fall back on his favorite old movies: Singing In the Rain, Funny Face and The Bandwagon.

#Alzheimer’s is a scary diagnosis. In our current vocabulary, #Alzheimer’s is a word that means ‘losing your mind’ or even worse, ‘losing yourself’. The truth is, #Alzheimer patients do not lose their minds nor do they lose themselves; they change and become unfamiliar to those who love and know them. Sometimes they move to the past; sometimes to a wished-for future and sometimes, they withdraw inward and we simply don’t know what’s going on because they no longer want or are able to communicate.

Accepting the older person with #Alzheimer’s disease is hard work and requires that we let go, that we change our expectations. Often it requires us to feel the loss of a loved one even though that person is still living. Here is the suffering. My heart goes out to all those who hurt because they are letting go of someone who they love. Take heart though. There is still pleasure to be had. There is still a way to have a relationship and communicate. One just has to open to it.

Published Aug 31, 2018