It is a tiny little word. The bane of Alzheimer's caregivers. The most frequently used word by most people living with Alzheimer's or dementia.
No.
When persons living with Alzheimer's say "no" why do we roll over and accept it? Why do we accept the word "no' when we know that people living with Alzheimer's don't really mean "no" when they say it?
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By Bob DeMarco
Alzheimer's Reading Room
Why do we become so bent out of shape and filled with anxiety when Alzheimer's patients say no?
Why?
I took care of my mom, Dotty, from November 17, 2003 until the day when she went to Heaven on May 25, 2101 - 3,112 days. And yes, I drank the Kool-Aide. And yes, for the first 18 months, before I made it to Alzheimer's World when my mom would say 'no" I would fold up like an accordion.
Topic - Alzheimer's World
Typical interactions.
- Mom its time to take a shower - answer, No.
- Mom its time to go to the bathroom - answer, No (or sometimes I just went).
- Mom drink your prune juice - answer, No.
- Mom its time to take your shower - answer, No.
- Mom are you going to go to Josephine's birthday party - answer, No.
- Fill in the blanks.
Blah Blah Blah Blah Blah.
Dementia Care - No More Blah Blah Blah
Yep that was me. The king of trying to explain to a person living with Alzheimer's. Of course after I explained she still said - No - most of the time.
And then it happened. Dotty actually explained to me why she always said "no".
We went over to the pool late in the afternoon. We were the only 2 people at the pool. We get into the pool area and I tell Dotty to kick off her sandals, then I take off her little pool coat, then Dotty sits down. I say, lets go into the pool.
What did Dotty say? No - of course.
I try to explain we are at the pool, why we should go in, how nice it is going to be. Dotty won't budge - no, no, no.
I go into the pool. Explain how great it feels, how nice it is. Dotty doesn't move. Finally, I get out of the pool. Wait till I dry off a bit and then I put Dotty's sandals and pool coat back on her.
On the way out Dotty wanted to know why we didn't go into the water. I said to her, because you said NO you weren't going into the water.
Dotty then said,
"you know Bobby when I say NO that doesn't mean anything, its just the easiest thing to say".
What I thought? We went home and I started thinking about it. For some reason it all started to make sense. I was using the wrong approach. What did I need to do? Stop explaining and start guiding.
The next day off we go to the pool. This time instead of stopping I lead Dotty right to the steps that go into the pool. I take off her sandals and her pool coat. I take the first step into the pool and hold out my hand. Dotty asks, where are we going? Instead of a long explanation I say, into the pool.
Dotty says, I am not going in. I keep my big mouth shut, and hold my hand out. Finally she takes my hand and makes the first step. I notice Dotty acts like the first step into the pool is like stepping into a big hole. This is when I learned that dementia patients don't perceive water the way we do.
I finally get Dotty into the pool. She is clinging to the side. I suggest she relax. I finally get her relaxed. Guess what she says next?
This is really wonderful, we should do it every day.
You know how Alzheimer's patients like to repeat themselves? So for the next 1,000 plus times we go into the pool Dotty says - this is really wonderful, we should do it every day.
I want to say - mom we are doing it every day. Instead, I learn to bite my tongue and communicate in Alzheimer's World. So instead I say, great idea lets do it.
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR).
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