Step by Step
Last updated: February 2023
They say that the mind living with Alzheimer's disease is like having a zipper that has missing teeth. You can zip it up fine where all the teeth are intact. The zipper stops, unable to budge, once the gap is reached. The rest of the zipper above it may be pristine, but the pull won't go any further, tug as you might.
Any given task is a series of steps.
Breaking it down
To brush your teeth, you have to 1. Get the toothpaste. 2. Unscrew the toothpaste - remember, lefty loosey. 3. Get the toothbrush. 4. Squeeze the toothpaste onto the brush. Pea size? Fill the brush like in the ads? 5. Wet the toothpaste on the brush. No, wait. 5. Turn on the water. 6. Wet the toothbrush. 7. Stick the toothbrush in your mouth and brush your teeth. 8. Do we need steps for the brush part? She can still do that. 9. Turn off the water to conserve? Leave it on to eliminate a step? You have to wash your spit down the drain. Dry your hands and mouth. Now, flossing...
So. Many. Steps. It's daunting to figure it all out, and that's with a "normal" brain. There are things we do without even thinking. Autopilot.
Now, we have to break everything down for our loved ones.
Going step by step
Brushing your teeth goes nowhere if you can't get the cap off the toothpaste or don't remember that your toothbrush is in the bathroom. I have reminded my mom to brush her teeth only to have her look at me and look around her bedroom and ask where that is. No, mom, it's not in here. It's in the bathroom.
I am now my mom's "potty pal." I thought she was doing ok on her own. We noticed, my son, noticed actually, that grandma left the bathroom and didn't wash her hands. We heard the flush and no water running then the door opened.
Then I noticed toilet paper folded along with her napkins and tissues next to her chair in the family room. I recognized the white quilted pattern next to the other white napkins and Kleenex.
When she opened it to investigate further, it had poop in it. I was mortified. Horrified. Worried. Sickened and saddened.
Now I'm on paper watch. Was she blowing her nose with it? Ugh.
Which reality game show is this?
My son taped a sign above the toilet paper that reads, "FLUSH TOILET PAPER." I will take a length of toilet paper and fold it for her. She likes it folded better than wadded up. I have to explain what it's for. Wipe yourself.
She looks at her legs and her pull-up. Where the pee and poop come out. She looked at me so puzzled. "I'm supposed to know this. I feel so stupid!" No, mom. It's ok. Just wipe. No, don't touch it. Drop it. Drop it in the toilet.
I feel like I'm on some reality game show where you have to give your team instructions while they're blindfolded. I'm verbally, so far, walking her through so many of the processes she has in her life.
Adjusting tasks for Alzheimer's
I used to be able to say, "Go get ready for bed." I have to break it down into steps. "Take off your daytime clothes. Put on your night clothes." Or break it down even further when she looks at her PJs, then down at her body, the wheels not quite turning. How to get from here to there?
"Take off your shirt." It blows her circuits when the order gets switched. Her wet pull-up came off first by ripping it off the sides instead of after her shoes and pants. We can adjust the order on the fly without thinking. It blows her mind, and she doesn't know what to do next.
Sometimes I wonder if she really can't do it or if she's trying to please me and remember what I would do. One morning she woke up wearing two pull-ups. She missed the step of taking the wet one off first before bed. I thought it was one step. Change your pull-up.
But it was three or more steps. Sit down. Take the old, wet pull-up off. Please put it in the trash, and so on. Put the clean one on. She did that step.
Rolling with adjusted expectations
A few weeks later, while on a family trip, she got clothes out of her suitcase, got changed, including a new pull-up, and dressed all on her own! Am I being pranked?
It's like the dream where all your teeth have fallen out, only it's a zipper, but it doesn't feel very good. It's not the same tooth or teeth each time. Today she can do it. Later today, she can't. She had a UTI, which can cause a bunch of zipper teeth to go missing.
How do you deal with all the stuff you didn't have to think about before but now have to plan out? And the increasing responsibility? And has anyone used a bidet? Tell us in the comments below, or share your story with the community.
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