Apr 2, 2012


Of course, Alzheimer's World being what it is, it's not always the right thing to say.

By Claudia Marshall-Apers

When my mom started exhibiting some of the bizarre behaviors of moderate to severe Alzheimer's, I felt a little like Alice who had fallen down the rabbit hole.

Things were getting “curiouser and curiouser”.

Then I found the Alzheimer's Reading Room and discovered that there was another world called Alzheimer's World but I didn't fully understand how to communicate there.

Subscribe to the Alzheimer's Reading Room

I knew for sure that having a conversation with my mom was at times a tricky business.

In Alzheimer's World, it seems that subtle little differences in what the caregiver says mean a lot as far as the response from the “caregivee”. If you get it wrong, it's kind of like when NASA miscalculated a trajectory by a few millimeters and missed the planet they were aiming for completely.

It's tough to get it right – if you go into Alzheimer's World all the way you become lost and confused yourself. If you stay outside, the Alzheimer's caregivee becomes angry and tells you you're crazy.

In trying different things, one day my mom was telling me something straight from Alzheimer's World (I don't know, she saw someone who has been dead for 20 years or something about the mafia). I was not in the mood to go in or stay out one way or the other so I just replied with “oh”.

This must have given her the green light somehow because she kept on going. So I said “oh” again. She went on for a little while more and I said “oh” one more time before changing the subject completely.

I didn't hear any more about it that day. I guess “oh” was enough to let her know that I had heard her and yet allowed me to not engage in a conversation that could ultimately go wrong one way or the other.

I have used the word "Oh" many times. Of course, Alzheimer's World being what it is, it's not always the right thing to say.

Claudia Marshall-Apers is the full-time caregiver to her mom, Pauline, who is in the moderate to severe stages of Alzheimer's/dementia. Claudia is a transplant from New York where she was born and raised and now lives in the beautiful landscape of Rio Rancho New Mexico with her husband and 18 and 21-year-old sons, when they are home, along with their dog Cinnamon. Claudia holds a Master's in Art Education and is currently working on a series of artwork about Alzheimer's/dementia.

More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room