10 July 2025
I have to confess that it's been difficult to get a handle on what's going on. Yesterday, for example, Joyce did very well, getting into the house, eating lunch, talking about things and getting back down the stairs.
But today was a reminder that there's another side to the story.
When I got her up, she dressed herself but, as we walked around her side of the unit, she realized the skirt I'd brought her was too long. So she made it back to her room and changed to another skirt. That's a bit more walking than usual.
We went to the gym and she did two sets of 125 steps on the SciFit before Wendy and Neil the RNAs left their lunches and worked with her on the steps.
This time they had her go up a new way, more like what she does at home. She held onto the left bannister but used the trekking pole on the other side to go up and down the stairs. And she did that well, too, although she yelled at Wendy and Neil each time she had to do another of the three sets of three up-and-downs.
I asked Cassie the Physical Therapist if she had a platform we could practice step over because Joyce's left foot drags and gets caught on the lip of the threshold step at home. She got one from the gym and showed me an exercise that Wendy and Neil tried with Joyce when she finished the steps.
By then it was lunch time and she had her three bites of solids and the Boost. And a little ice cream.
We watched TV until it was time to go to the podiatrist in Stonestown. And she walked to the car.
I mention all this to point out that she walked a lot today. She didn't seem to remember how much, so she kept going. And she did well. I can tell because I hold her belt at her back and can feel how steady she is.
But she was scared the whole time, she said. She didn't think she could get where she had to go. She thought she would fall. Even with me holding her belt with one hand and her hand with the other.
That's the dark cloud of dementia.
She walked up a slight hill to the office building where the podiatrist was and we took the elevator to the third floor and across the hall to the office. She was worried about how far she would have to walk from the waiting room to the exam room (less than 10 feet).
And she made it back to the car with no problem, although I could tell she was getting tired and bending over more.
So even though she had walked a lot, she walked even more.
In the car, I observed she had gotten out of the SNF for two days in a row. And I told her next week she'd go to the dentist and for her debridement so she'd be out two days in a row again.
"I canceled the dentist," she said.
I wasn't sure she really did. I asked her how. She'd gotten an email and responded on her phone, she said. And they said they'd reschedule, she said.
But she had no reason at all to cancel. It was just the incessant negativity, the constant "No!" to everything, refusal without cause.
After she walked back to her room and I returned to the car, I called the dentist. "Did she really cancel?" Andy, the woman in charge of appointments, confirmed that she did. I explained it's the dementia, she says no to everything. "I should have known," Andy said. She rescheduled her for September, as soon as she could get her in, and promised not to let her cancel.
I drove home thinking the dementia had won this battle, that it couldn't be beaten. And, frankly, I wondered how I could live with it.
I hope the higher dose of Lexapro will help but it hasn't been the answer so far. Memory loss you can live with but this sabotage of her health is another thing. It threatens us both.