Worse, now

It's Saturday morning and I was taking the opportunity to catch up on sleep. At about 7 o'clock I felt May's hand on my chest. She leaned close and said, "I'm confused." I gave up sleep and asked what she was confused about.

"You're my husband, right?"

"Is that what you're confused about?

"I don't know..."

"You know I'm the guy who takes care of you but you just want to be sure I'm your husband?

"I think so."

"Yes, I'm your husband."

(Long pause, during which I nearly go back to sleep)

"But you're my husband, right?

"Yes, that's right."

(Another long pause, in which I think I do drift into a light sleep)

"You're Bill, right?

"Are you really asking that?"

"I don't know...but...you're Bill, right?"

"Yes, I'm your husband, I'm the guy who takes care of you, and I'm Bill."

(Pause)

"Who's that woman that Bill has to take someone to see?"

"I'm Bill, and there is no woman that I have to take anyone to see."

"It's just so confusing with all these people coming and going."

"There's no one here but you, me and Adam. Ted's on a trip."

"Why does Ted live here?"

"Because he's Adam's dad and he takes care of Adam so I can take care of you."

"I want you to stay with me."

"You stay with me. I take care of you. This is our house."

"I love this house."

On the other hand

Every day, there are comments like this:

"Doesn't this taste great?"

"Look at that sky!"

"I would love to see the inside of that house."

"Isn't it great to be back in the city?"

"Thank you so much for letting me come with you."

"He's such a sweet boy."

"Don't the jades look great out there?"

"It's almost balmy out here!" (It isn't, not even close.)

"Look--you can see the clock!"

"I love that song."

It's like everything is for the first time.

How does this house work?

I was at the computer at 6 o'clock this morning when May appeared at my side and said, "I need someone to explain to me how the house works." I walked her back to the bed and asked her to explain what she meant, and then there was this:

"What do you mean, how the house works?"

"Well, there are all these people, coming and going. And I just don't know, I don't know how it works..."

"Okay, let's count the people. There's you and me and Adam. Adam's been with us since we bought this house. And then there's Ted, who's been living here since Thanksgiving. That's four people. Ted comes and goes. The rest of us don't."

"Where did this house come from? How did we get here?"

"This is our house. We own it. You like it, you like this house."

"I love this house."

"Yes you do. You tell me that all the time. You love this house."

"But, we own it? It's ours?"

"Yes, we own it."

"When did we get this house?"

"We moved in here in December, 2005 -- so, four-and-a-half years ago."

"And we own it?"

"Yes, we own it."

"Okay, okay."

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."