Would you like cardboard with that?

She sat down on the couch to eat a bowl of dry uncooked noodles. On the coffee table was an in-progress jigsaw puzzle. I was watching carefully to see if she could actually chew and swallow those dry crispy noodles. Suddenly she leaned forward with her fork and scooped up four puzzle pieces -- border pieces! -- and was on the way to her mouth with them. I shouted her name. She looked up. "Are you going to eat those puzzle pieces," I asked. "They won't hurt me," she said. "But it will hurt the puzzle," I told her.

She took the fork down from her mouth and dumped the puzzle pieces into the bowl. It being Adam's puzzle, he moved close enough to keep an eye on things. For a long time, nothing happened. Eventually though, she made a move with the fork and Adam and I both jumped. She had missed the puzzle pieces, but I decided it was time to reach in and take them out of the bowl. She looked at Adam and me as if we were fuddy-duddies.

The Caregiver's Mirage

Walking is good for her. But she walks much slower than I do, and there are parts of my usual walking route where I like to run. So I didn't always invite her to come along, and I would feel bad about it. Then one day it dawned on me: she could ride her bike! That would allow her to keep up with my pace, even if I were running.

Meet, if you will, The Caregiver's Mirage: the sudden appearance of a simple solution, which vanishes as you get closer to it.

The first time we tried the "I walk/you ride" approach, she ran me down from behind not once, but twice. And any fence or flowerbed close to the sidewalk exerted a gravitational pull that slowly pulled her closer until she crashed into it.

We set out together this morning and she was sucked into the first picket fence that came along--two houses down from where we live. The fence yielded to her impact before finally snapping back. I'm thinking, one more freeze/thaw cycle and I would have been involved in a "make-good" negotiation with my neighbor one house removed.

Seeing her crash reminded me of how dangerous it was to walk in front of her, so I asked her to take the lead. However, when she couldn't see me, she doubted that I was really back there. She kept saying something that I couldn't hear so I ran up alongside her and said "I can't hear you" and she said, "That's all I needed--I didn't know where you were."

At the farthest distance from home she decided to get off and push her bike, which makes for a pace even slower than ordinary walking. Was there a problem? No, she just wanted to walk the bike for a while. And so I resigned myself to Dementia's First Law of Caregiving, of which The Caregiver's Mirage is only a proof point: Everything is hard, and any attempt find an easy way will turn into a rebuke of your prideful nature.

Normal Grammy

I was out of town on business for five days. I got back yesterday and at bedtime, Adam asked if he could sleep with me. I said he could. He and I got in bed but May was having trouble getting settled and got up to go to the bathroom for the second time in about two minutes. While she was out of the room, Adam, on the verge of falling asleep, turned his head toward mine and said, "She's getting worse and worse. Normal Grammy would be better."

'If you see me on the street...'

This morning she asked me how much longer I was going to stay here. I told her she had to give me some time to find a place. Tonight she went for a walk and came back looking sad. "I need to leave," she said. "I've got all this family in Oklahoma, and most of them are not doing well, and they need my help. I'm sorry, I don't want to hurt you, but I have to go. I'm not ever going to get married and I need to be somewhere I can do some good."

"But you've been telling me I had to leave," I said. "You mean, nobody's going to live here?"

She said she was sorry and she hoped we could always be friends, said it would make her sad if she left on bad terms. "I'll probably be back this way sometime," she said. "If you see me on the street I hope you'll wave."

Kicked out

Okay, things have changed...

Saturday afternoon I realized she wasn't in the house. I checked with the neighbors and no one had seen her. I decided the best thing to do was wait--because if I went looking for her and she came back, we'd miss each other. It wasn't long before a policeman showed up at the door, with May behind him. He said she had walked to the 7-Eleven and told them that she was being followed and had left a two-year-old at home alone.

Saturday night she told me that she didn't know who I was, or where I came from, but there was no food in the house so she thought it was time for me to move on. I told her I would need some time. I thought maybe this would all blow over.

Sunday morning she was standing at the foot of my bed when I woke up, and she was angry. "I don't know who you are, or what you're doing here, but I can't go on like this," she said. "This has been my house forever and I don't know why you think you can just keep staying here. So you're going to have to leave."

At that point, I had a brilliant idea. I took her downstairs and showed her a picture--her favorite--of me and her laughing in the backyard of our farm house in Missouri. I said, "This was taken at the farm." She snapped, "I know what that is." I took that as a good sign. I told her that I was the guy in the picture. I pulled out the photo album and showed her pictures of me back through our 30 years of marriage. It was my Perry Mason moment. She said, "I see all these pictures ... and they don't do a thing for me. I want you to leave."

Yesterday I had a meeting in Chicago and she didn't ask when I'd be back, as she usually does. I took my time, and got back about 5 o'clock. She was kind of friendly. We made it through the evening without any demands that I leave. I thought maybe we were done with that one.

But just now she came to me at my desk, and in a friendly sort of way, she said, "Do you know when you'll be leaving?" I said I didn't know. She calmly said, "It doesn't have to be today. But I've got babies coming, and I need the room." I asked her when the babies would be arriving. She said, "I don't know, but the weather's changing, and this time of year, they just bundle all up and the house gets really full."

As I've been writing this, she has come back twice to ask when I'll be leaving. I told her I'm not sure but as soon as I find out, she'll be the first one to know.

What's going on...

I started this journal as a way to keep track of how the condition was progressing. I wanted to have an accurate answer if a doctor should ask me, "And how long has such-and-such been going on?" Later, as more and more people would ask, "How is May doing," I started giving out the address of this site so I didn't always have to be talking about the latest episodes. And then I reached a point where I just didn't want to write about it. For thing, I realized that no doctor was ever going to ask any more questions. It doesn't matter when a certain symptom showed up, and there's nothing to be done. Plus they're never going to guess at the one thing that would enable you to plan for the future: how much time do we have?

So for everyone who wants to keep up, let me just say this:

Every two or three days, we have an outbreak of belligerence, consistent with the symptoms of Sundowner's Syndrome. Out of the blue, she'll say things like this: "I take care of all these little boys. I cook for them. I dress them. I wash their clothes. I make sure they have a place to sleep. And I can't see that you're even lifting a finger to help." Or like this, "I don't know what right you have to keep me here when all I want to do is go home. I miss my friends. I'm not sure when you came or how you got here, but you have no right to keep me here when I just want to be back in Oklahoma."

Also, four or five nights a week, she gets up shortly after midnight and stays up the rest of the night. She goes into her closet and moves clothes around for five or six hours sometimes. When I get up at 6, she expects me to take her to lunch. She's astounded when I tell her it's 6 in the morning.

During the day, she falls asleep anytime she slows down. She falls asleep with a cup of coffee in her hands and dumps it all over herself, she falls asleep in restaurants waiting for food to come, she asks me a question and falls asleep before I can answer.

She has trouble making a sentence. The words just aren't available to her.

She gets very anxious if she can't find Adam. He went to a birthday party this week and she repeatedly came into my work space to say "I can't find Adam" or "Do you know where Adam is?" Explaining that he's at a birthday party doesn't help. She wants him where she can see him.

If I'm not here to put food in front of her, she doesn't eat. (I have help in the house now, so she's not alone if I have to meet with clients.) One day last week I left home at 7 in the morning and got back about 3. She said she didn't feel good. I asked if she had eaten lunch and she said no. That may or may not have been true, but the odds were that she hadn't eaten lunch or breakfast. I made her a sandwich and immediately after eating it she said "Oh, I feel so much better!"

She puts dirty dishes into the dishwasher with clean dishes, then comes back in a few minutes and unloads the dishwasher. So you find dirty plates and utensils put away with clean ones. You learn to inspect the tines of your fork.

She often thinks her dad is here. The other day she walked into the kitchen while I was cooking a veggie burger. "Is that for Dad?" she asked.

That's basically it for now. I'll continue to write, but probably not as frequently. You might want to check about once a month.

Groundhog Day

For breakfast I made two slices of Health Nut toast, spread with a veneer of organic peanut butter and drizzled with clover honey. I served it in the family room. May finished hers quickly while I took a more leisurely pace. As soon as I finished, she picked up her plate and reached for mine and asked, "Would you like some more?" as if this had been her production all along. My first touchy situation of the day. I decided to play along.

"Thank you," I said, "I'd love another piece." I had a line of sight to the kitchen so I watched to see where she might get stuck. I saw her plunge a knife into the jar of peanut butter and thought, oh no, I'm not eating this on untoasted bread!

I ran for the kitchen, only to find that no bread at all was involved in this procedure. Holding a glob of peanut butter on the end of a knife, she was staring down at an empty kitchen counter. "I can't make heads or tails of this," she said. I said, "I know. The bread's in the pantry." She yielded the kitchen to me and I made us a second serving of breakfast.

Back in the family room, as I chewed my last bite, she reached for my plate and said, "Would you like some more?"