She’d left her father a “to-do” list that included tasks around the house.
He was home, by himself, for a good deal of time during the day. When his caregiver was there, Max had the help around the house that he needed. When she left, though, Max was also left to his own devices. Max’s daughter came home to find him, head tilted back, asleep in a chair. The closet was still as she’d left it.
Max’s daughter was frustrated, but she didn’t understand that, while Max wanted to do the task, he couldn’t even get started with it.
One could argue that it’s because the instructions weren’t clear enough, but even if they’d been explicitly clear, step-by-step instructions, Max wouldn’t have been able to follow them. He was at a stage in his dementia where accomplishing tasks by himself was impossible.
People living with dementia have trouble starting tasks because the “initiation” of a new task is too complicated. You know this if you’ve ever had to help someone living with a moderate or later stage of dementia get dressed: what you’ll notice is that you need to “cue” each new task before they start it.
And, the task needs to be cued verbally or physically.
This is why notes around the house don’t work. Reading is difficult because it involves two different processes: being able to understand the words and then being able to interpret what they mean in context. These two things are too complicated for someone with a moderate or more advanced stage of dementia. Sometimes, they are even too complicated for someone in early stages.
This is why your reminders don’t work. This is why putting colorful pieces of tape over items you don’t want them using, caution signs over stairs you don’t want them climbing, or big “USE THIS” signs on walkers won’t cut it.
It’s not that Max didn’t WANT to help his daughter: he did! He just couldn’t figure out how to get started with the task.
If he could, he would. But he can’t. So he doesn’t.
I was recently talking to a care partner about something similar. She was frustrated at her husband’s struggle to walk properly using his walker. “I have a sign there for him to remind him, he has PT and OT, we’ve been over it a million times…”
It wasn’t the first time we’d talked about the struggle he was having. “Here’s the bottom line,” I said. “It’s just not going to happen. You can’t teach him how to walk properly again at this point in his disease process. It’s not that he doesn’t want to. It’s that he cannot.”
This was probably hard to hear, but it’s something care partners need to understand.
It’s not that they don’t want to. It’s the disease that makes it impossible.