I think I've got it down to a science now, even though all science pays big respect to the notion of randomness. And there are lots of things that even science cannot predict.
At least I know to phone my mom between noon and 12:30 every day- sometimes even in the middle of a doctor's appointment - because that's when she's waking up. Not from her nap but from her night's sleep. Getting her up and to eat is a delicate maneuver.
"Why is she sleeping so much?" people ask. The easy answer is "That's her disease." But I"m not sure really what disease she has, other than one symptom is she sleeps an awful lot. Whatever disease she has, this is what it does.
I'm not sure what disease she has because the doctors say it's one thing but none of us believe, even 4 years later, that that's what she really has. Like Alzheimer's. They don't really know if you have it until you die and they look at your brain and even the they don't really know because many people with a so-called "Alzheimer's Brain" are perfectly fine. But she does have a disease.
The other phone call is, on most days, between 3:30 and 4pm and that call also is a wake-up call, after she has gone back to sleep after lunch. This call is to get her to get up, stand up, walk down the hall.
"I'm comfortable here in bed," she says. "Why can't I just stay here under the covers?"
Then I have some sort of answer. I've been practicing this answer for a long time. "Well, you need to stand up straight, it's better for your back"
"I'm tired." I've practiced this too. "Then you need to walk some and get your blood circulating and get some oxygen to your brain."
"But you told me I could sleep until dinner."
"No, Mom, I didn't. Somebody else might have said that but I didn't. I said, "I'll phone you between three thirty and four and you'll take a walk and you said "okay."" They tell us to go along with people who don't remember things like that. I've found that telling her somebody else may have promised her that she could stay in bed until dinner works.
And back and forth we go. Doing this for close to a year now, I know to say "Take the walk and then you can go back to sleep until dinner." The promise of being able to go back to sleep is often enough to get her willing to walk down the hall and back.
Today we had version B of this. As she was getting up and out of bed and reaching for her rollator, she said, "I'd rather be dead than get up and walk down the hall." She wasn't kidding, either. We don't take this lightly. I know life is difficult for her.Wanting to live is difficult for her. But this is no time to focus on this truth.
"Well, Mom, I don't think today's going to be that day." She doesn't bite back.
"Are you ready? Okay, let's go!"
I've gotten out of that one, for now.
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