the part of you that wants to sleep

When I called Mom's room at noon, I wasn't surprised that she was still in bed but I was surprised that none of the care aids had been in to get her up for lunch (or, in her case, the first meal of the day). Or at least that's what she said. If that's to be believed, given her current memory. But I said I'd call her back in 15 minutes, thinking that a care person would come in by then.

I was wrong.

I told her, "Mom, press the button on the thing around your neck." Sometimes I don't recall the name "pendant." It's no piece of jewelry, that I can tell you for sure.

Well, today she was able to press it and while it was blinking we had at least lots of time to talk. You know that having conversations with somebody with dementia can be challenging. 

"I'm tired," said she.

"I know," said I. 

"I just want to go back to sleep," said she.  

"Well, you can go back to sleep after lunch. It's not a very busy day. I don't have anything scheduled for you," said I. I know to say this, to promise her she can go back to sleep, which she can. I'd rather she do an activity, or sit outside in the sun, but I know to promise her the thing that will give her comfort. The thing she wants to hear. Then something surprising happened.

"I'm afraid," said she.  Now I start to think maybe I should have the facility psychiatrist come in and talk with her because she's talking about emotions! And she's in touch with them. This can be a good beginning.

"Afraid of what, Mom?"

"I just want to sleep." This is not such a stupid statement. This is a moment of self-awareness. For a person with dementia to be so self aware and to be able to share that, to bring me in to this thinking, is a moment I'm cherishing.  "I'm afraid that I"m going to be like this."

"Like what, Mom?"

"To be like this, and I'm not going to be more active." Suddenly we are in another zone of consciousness.  This word "active" is not a word I've heard her say in a long very long time.

"You me to be more active, and do things? Like what, Mom?" Am I pushing too much? Too fast? How far can I take this? Will I get another chance to have this conversation again?

She doesn't answer. The pendant is still blinking and the care person has not come in. I know that lunch will be over soon but I want this conversation to continue.

"So part of you wants to sleep and part of you wants to be active. Which one would you like to have right now?"

"I want to be active but the one that wants to sleep is stronger."

It is strong. And it's her biology at this moment. And while this moment is intimate, I think that after lunch the part of her that wants to sleep will win.

She may not remember this conversation but it made my day.

 

Today Is Not That Day

If you don't know what a rollator is, you are either not old enough yet or you're probably not a caretaker. I fit into the latter group. Those who are also caretakers understand just what a challenge it is.  In my case, we do it by phone. We live 300 miles apart.

 

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.