It's so hard to make choices that are both good for Mom and good for me.
Yesterday I planned to bring her to my house for three or four hours for July 4th, but after one hour she was demanding to be taken back to her assisted living residence. I concluded that she needs more peace and quiet, fewer big outings.
Today I'm not going to visit her until 3:30 pm, partly because I'm busy with other errands and partly because I think she might be having a sleepy day after being out four hours yesterday. By "sleepy" I mean impossible to rouse when I hold her hands and talk loudly into her face, barely waking for meals. The Lewy Body literature calls the daily changes in alertness "fluctuating cognition."
When I get to her room, however, she is wide awake and angry that I had not come sooner. As a matter of fact, she's also angry at the two caregivers, Marnie Reid and Bethlehem Solomon , who are helping her out of her wheelchair onto the toilet.
"These people don't come when I call them," she says angrily. "I yell and yell and they never come to help."
"But they're helping you now," I note.
"They don't care. 'Why should we bother to help her? Just let her yell' they say."
"We didn't hear you," Marnie says. "Your room is so far from where we are, and we were working with Howard."
"That's what they always say. I'm going to move out of here."
"Mom, they have other people to deal with; Marnie and Bethlehem are the nicest ones here."
"Are you going to fire us again?" Marnie teases.
"They should make sure the pull cord is in your hand, so you can call them that way."
"I told them I was signed up for the show--you always sign me up--but they wouldn't take me."
"You mean the 3 pm music on Wednesdays? I should have gotten here earlier to take you to it."
"Yes, you should have gotten here earlier. You never come when you say you will."
"A group went out to see a movie today," Bethlehem tells me out of Mom's hearing.
"I'm ready to go. I want to go to your house," Mom announces.
"You were there yesterday but you didn't want to stay long. You wanted to come back here."
"I want to go to your house today."
"You can come on Sunday. We'll go to church on Sunday and then to my house, but today is Wednesday. We aren't doing that today. We need to go to Rite-Aid and buy a birthday card for your brother, Herschel."
"Okay. But can't I go to your house?"
"Not really, we can't go every day."
Soon I am pushing her wheelchair to the elevator and outside onto the sidewalk. She is satisfied to be going somewhere, anywhere.
When we reach the greeting card section of the store, she thinks we are looking for a card for my brother Jim, her son.
"No, it's for Herschel, your brother Herschel," I say.
We get a card and then go the to grocery store to buy little cans of V-8 in eight-can packages. She seems to be pretty happy as we wheel back to her residence.
She signs the July birthday cards--one to Herschel and one to her daughter Emily. She enjoys putting the birthday money in Emily's envelope.
I tell her I'm planning to mail her brother a snow globe of Telluride, like the one I gave her.
"That's hard to mail," she comments, and I assure her that I can pack it well. Good to know she can get that far in her thinking.
Connie, her evening caregiver, arrives and I leave, revising my mental notes on her care.
She needs daily excursions of no more than an hour--except on sleepy days.
Without somewhere to go, she gets bored.
With too many hours out, she gets tired and irritable.
Today she was unusually irritable, almost agitated.