Bedtime issues

She just came to me where I was working. Distress all over her face. "I'm having trouble getting to bed," she said, through tears. "I think I'm supposed to be doing something but I don't know what." I asked if she needed help and she nodded. I walked her upstairs and didn't see anything that she might have been working on. I told her there was nothing she was supposed to be doing. I walked her to the bathroom and told her to brush her teeth, put on her pajamas, and go on to bed. She was okay then. This feels like a whole new level of the disease.

Grapefruit, the metaphor

I am haunted by something.

I wasn't going to write about it, because we've already spent too much time in the kitchen in this space. But I can't get it out of my mind, and so, this seems like the only way...

Saturday morning I was at the kitchen counter preparing the grapefruit I had been dreaming of for breakfast. I am fairly meticulous in my grapefruit preparation. Every cut is precise. No part of the fruit is wasted. If I have to dig even one cell out with my spoon because of a missed cut, the whole experience is ruined for me. I had just finished when May showed up with her own grapefruit and knife. She placed hers on the counter next to mine, looked at me and said, "Now, how do I do this?"

Right away I saw trouble. She was poised to cut the fruit on its axis. There's no recovering once you make that mistake. I said, first of all, you have to cut along the equator. I turned it for her. To make sure, I made the cut myself. Then I said, cut this way (circumference) and this way, twice on each cell (radius). She nodded and I took my grapefruit to the TV room.

She joined me a few minutes later and we sat side-by-side, eating our breakfast. I was just finishing when she said she couldn't eat any more. Said she was full.

Full of grapefruit?

I looked over and saw half a grapefruit untouched, and another half mangled and battered. I told her I would eat the good half. When she passed it over to me, all I could do was stare. It was heartbreaking. The circumference cuts were all over the place. They strayed far from the rind, leaving valuable pulp unavailable to the spoon. The radial cuts were hit and miss. One side of a cell might be cut, but not the other, which makes the cell flip to one side when you try to dig it out. But that's not what bothered me.

All I could think was, this is her brain I'm looking at. This is what has happened to her cerebral cells. The precision is gone. Everything is approximate, a hopeful push to get it right, with guesswork for a guide and dexterity shot all to hell. And it's never going to get better. Only worse.

Preparing vegetables

I do the cooking now, but she wants to help. Tonight I asked her to wash some potatoes and slice them in small pieces. She stood there not knowing how to start. Finally she said, "I don't know what to do." I said, "First, wash the potatoes." She snapped, "I know that." So I backed off. She picked up a potato and started peeling it. I said no, don't peel it. Wash it and slice it. She froze again. No matter how many times I said, "Wash the potato," she never made a move toward the sink. I asked her if she were going to be able to do this and she said she didn't know.

Finally it occurred to me that maybe she could copy me if I did it. I washed a potato and sliced it. She seemed to understand, but reached for a potato without washing it. So I said, maybe if I washed and you sliced, we could do this. She nodded. I washed the potatoes one-by-one and handed them over to her for slicing. From time to time she would point to what she was doing and ask, "Is this how you want them?"

I moved on to start cooking the potatoes and pointed her toward an onion I had placed next to the cutting board. She held it up with an inquisitive look. Chop it up, I said. She went to work on it, checking with me every few minutes to ask if this was how I wanted it. It went a little better with the broccoli, and she had it down pat by the time we took on the red pepper.

Little things around the house

It bothers her when the light in the mud room is on, or the lights in the back yard. But she always asks if she can turn them off. She thinks I may have a reason for leaving them on, which I never do. Last night she came into the living room with an anxious look, waving her hands toward the back of the house. She said, "Is...? Can...? Oh, I don't..." And she started to turn away discouraged. "Turn off the light?" I said. She spun around and pointed her index finger at me. "YES!," she said, "THANK YOU!" And she was off to darken the mud room.

***

Today I was standing at the pantry door, trying to figure out what to have for lunch. It was complicated by the fact that it was 2:30 in the afternoon, and my decision would have dinner implications. May arrived and stared silently with me into the canned goods. She was the first to speak. "I used to know how to do this. I could just look in there and pick out something to fix. I guess I've forgotten how to do that."

Laughter in the house!

"When is Ted coming?"

"Is Ted here?"

"Have you heard from Ted?"

Those questions have been constant for almost a week. So finally last night I said, "What's this obsession with Ted? He's not here. He's not coming. He's at work. I don't know when he's coming. Don't ask me about him anymore."

I said it in a nice way; she chuckled and said she would try to stop asking.

An hour later she says, "Is Adam downstairs by himself?" "Yeah," I say, thinking, if we're upstairs, of course he's downstairs by himself. Who would be with him? "Oh, I get it," I say. "You can't ask if Ted's here, so you'll just ask if Adam's by himself. Like, who else could possibly be with him?" She thinks that's funny, so I decide to play it for all it's worth.

"You sly fox," I tease. "Who could be downstairs with Adam? Oh yeah, that guy I'm not supposed to ask about! Well, there's more than one way to skin a cat..."

She laughs hard, and possibly revels in the fact that she's been called a sly fox. I laugh too. It feels really good to be laughing together.

Another hour goes by, and I'm sitting at my desk thinking about how I might tell this story in a blog entry. She looks at me and asks what I'm smiling about. I tell her I'm just remembering her sly way of asking if Ted is here. Her face contorts in a manner that says, give me more clues, I don't know what you're talking about. So I tell her the whole story and she enjoys it all over it again. As do I. Two good laughs before bedtime. Best medicine there is.

Clean? Or dirty?

She points to a plastic tub on the floor and says, "I don't know if those are clean or dirty. I guess I should just start over." In the tub are fluffy brown towels and a brown bed sheet. Next to the tub is an ironing board with a brown shirt on it. I consider the evidence thoughtfully. "Well," I say, "you obviously were ironing a brown shirt. It must have been clean. Everything in the tub is brown. My observation is that you typically go to the basement with dirty laundry that's all mixed up, and come back with clean laundry sorted by color. I think you separated all the brown stuff in the basement, washed it, then brought it back here. You stopped over there to iron the shirt. I say, these towels and this sheet are clean." That makes sense to her, so I go back to what I was doing.

Twenty minutes later, she says, "I guess I'm going to just wash this again. I don't know if it's clean or dirty." To which I say, "You know, it's all brown. That makes me think it's been sorted, washed, dried, and brought back here. So I say its clean." I take the shirt upstairs to hang it up. She disappears with the tub.

Several hours later she's back with the tub.

"I don't know if these are clean or dirty..."

"CLEAN!"

She takes the towels out and starts folding them on the couch. On about the third towel, she turns and says, "You know, I didn't ask to be like this..." There are tears on her cheeks.

But she was no longer asking if the laundry was clean or not.

Lunch amnesia

She's not feeling well because of a cold. I asked her if she would like to get out of the house and go to lunch, or would she rather eat here. She couldn't decide. I said if it didn't matter, I'd rather stay home and I would fix her something. I went downstairs and warmed up some leftover chicken and rice and took it to her in the living room. She said thanks, and I came back upstairs to work.

Thirty minutes later she appears in my workspace and says, "Are we going to lunch?" She can tell by the way I look at her that something is wrong. I ask her if she ate what I gave her, and she doesn't know. I walk with her downstairs to see if there's any evidence. She finds a half-eaten bowl of chicken and rice in the kitchen and holds it up for me to see. This is upsetting to her, that she ate and doesn't remember. I go back to work.

Another thirty minutes later, she shows up with her purse in hand and says, "So, when are we going to lunch?" Again she reads the look on my face. I tell her she already ate, and she remembers enough to be really upset. She's sleeping now.

***

Last night I was de-cluttering a room. I was about three-quarters finished, with a pile of stuff on the floor that needed to go to the trash or to the basement. The phone rang, and while I took the call, she decided to "help" by putting everything back on the shelves I had just emptied. I couldn't mask a slight irritation when I came back. After I had taken the stuff back off the shelves and made several trips to the garbage can and the basement, she looked at me and said, "I'm not going to get any better am I?"