Food confusion

Tonight she asked me about every 15 minutes if we were going to the grocery store. Each time I calmly replied that tomorrow is Super Bowl Sunday--the grocery store will be a mob scene and the salty snack aisle would be stripped bare. So we would go grocery shopping soon, but not today. There came a point where I reached my limit and said, "I cannot answer this question again. No, we are not going to the grocery store tonight!" 

She went back downstairs and came back about 10 minutes later and said, "We have that frozen casserole that Annie made..." I looked at her and searched for what to say. Before I could say anything, she spread her arms wide and said, "I don't know what you're asking me to do..." I walked over to her and said, "There's much confusion here. I'm not asking you to do anything. We ate lunch at 4 o'clock. I'm not even thinking about food." 

She said she would just try to find something for herself. I followed her downstairs and pulled a pizza out of the freezer and asked her if she could eat that. She said yes, so I helped her put it in the oven and set the temperature. I came back a few minutes later to make sure the pizza wasn't burning. She asked, "Do you want rice with that?" 

Again I didn't know how to answer. I wondered if she had put something else in the oven. "Do I want rice with my pizza?" is all I could think of to say. She just turned away from me and put the rice back on the shelf.  

No, no, NO!

She asked me three times in the space of five minutes if I wanted toast with my dinner. The third time I said no, it might have been with a little edge to it. She asked if she had asked me that seven times and I said, only three. She shook her head and muttered "I hate getting old." She's said that several times lately -- she hates "getting old," as opposed to "having this disease." 

These four walls

I was traveling on business and Annie was here to stay with May. When I got back I asked Annie if anything weird happened. She said no, but something very sad happened...

Annie was going shopping and asked May if she wanted to go. May said no. Annie wrote down where she would be, what her mobile number was, when she would be back. She returned to find May crying. May told her, "I sit in this house all day staring at these four walls and I would think that if you were going out, you'd take me with you." 

How did we get here?

Driving back from a neuropsych appointment today, she asked me, "How did we end up living in Chicago?" I told her the long version, which started in 1992 and culminated in our official transfer of residence in 2000. It took up the entire 30-minute drive, and it was as if she were listening for the first time to the history of someone whose story was important to her. 

Deja kindergarten

This was information night for those who will be sending kids to kindergarten next August. That's something we haven't done since 1986. But tonight we went to the meeting, for Adam. May took one look at the flyer on the kindergarten curriculum and said, "Isn't that the same as the one we just got the other night?" I didn't know how to answer, and in my hesitation she said, "Didn't we just do this?" 

Bugs in the night

Adam was sleeping with May in our bed; I was in the little bed in the extra room. I awoke with her standing over me. "Adam and I are covered with thousands of little bugs--more on him than on me," she said. I got up and followed her to the bed. We're just a few days past a full moon and the snow cover sent a fair amount of light into the room. She pointed to the bed and the walls and said, "See? What are those?" I didn't see anything. I turned on the bedside lamp. Everything looked normal. "I don't know what to say..." she said. This morning she came in and asked if I slept well. I said I did, except for the bug hunt. She looked confused and I told her that she had seen bugs last night on her and Adam, the bed and the walls. "Oh yes," she said, "what were those?"

Trip routine

"What time do you leave?" she asked over breakfast. Now it starts...

I'm leaving on a business trip five days from now. Between now and then, I will be asked, several times a day, "What time do you leave?", "How long will you be gone?" and "Do you need anything ironed?" She will be relieved every time I tell her it's not time for me to go yet. 

Listless day

She hasn't felt well, physically, for the past several days. Today she didn't want to go with me to take Adam to school, didn't want to go out for lunch, didn't want to go with me to pick up Adam. She lay on the couch and slept off and on. Late in the day she came up to my workspace, weepy, and said, "I hate getting old." I asked her what brought this on and she said, "I used to be able to go anywhere I wanted." She lay down on the upstairs bed while I went to get Adam. She had a bowl of Raisin Bran for dinner and went to bed early.

Grocery shopping

For an hour before we went grocery shopping today, she worked on making a shopping list. I've never seen one of her lists actually show up in the grocery aisle. But she was working extra-hard at it this time. When we got to the store she started asking me if we were out of stuff. I asked her about the list and she looked at me like she didn't know what I was talking about. The produce section is extremely stressful because we have every kind of fruit and vegetable rotting at home, and she always wants to buy more. Last time I didn't say anything, which means we now have stuff in two stages of decomposing. This time I put my foot down, which is upsetting to both of us. Adam was with us and even he said he didn't like me talking to Grammy like that.

When we got home she asked if we had bought eggs. I said no. She said that was bad news, because we only had two eggs left. I told her those were eggs Annie bought when she was here in October. She was horrified at that, but I said Annie would be here tomorrow night, and she would throw out everything she recognized from two months ago and then go to the grocery store and start over.  

When?

Yesterday I was leaving for a day of business meetings. Here's how the conversations went:

6:50 a.m.

"When will you be back?"

"I'll be at Abbott Park all morning, then in Lake Forest with August Jackson in the afternoon. I should be home before 5."

6:55 a.m.

"Do you know when you'll be back?"

"Before 5."

6:57 a.m.

"You don't know when you'll be back do you?"

"Yes, before 5."

I got home at 4:30 and was met at the back door.

"There you are. I was just thinking, Bill should have been home by now."

Just two little reminders

She had a good day. Only two little reminders of her condition:

We went to lunch in a shopping area that she used to drive to. It must have dislodged a memory, because she said, "I wish I could still drive..." After lunch, she walked off without her purse before a woman at the next table called to her. It was the second time this week we almost left an establishment without a purse. 

Cleaning day

There was a cleaning frenzy here today. There is evidence in my work space, in the living room and in the kitchen. It's nice. It happened while Adam was at school and I was in business meetings. The downside is that Adam and I have both spent a fair amount of time looking for things that are not where we last saw them. He's found his (or rather, I found his for him), but mine may be gone forever. 

A peaceful smile

She's still using the digital reader. But how to turn it on and off remains a mystery. Last night she was reading in bed across from where I was working. She didn't see me staring at her; she was engrossed in the story. There was a peaceful smile on her face. I watched for a long time, until she finally looked up. "You're smiling," I said. "She's such a good writer," she said. It was no longer about the technology of the reading machine, or the confusion in the reader's mind. Annie Dillard's storytelling had taken over. 

These white walls

Since we moved into this house three years ago, she has been adamant about painting the walls. The largest room in the house still has a coat of primer and blue tape on the walls, from a project she started in the first year but never finished. Several walls have patches of dark paint where she tried out a color and decided it wasn't right. Many walls have had paper paint swatches taped to them or stuck in the molding, but most have finally fallen off. 

She spent all of yesterday on the couch, mostly sleeping. Late in the afternoon she sat up and said, "These white walls are driving me crazy. They have to get painted, but I don't think I can do it anymore. Is it alright if I hire somebody?" 

That's new. Up until now, she's always talked as if she could just attack a room and finish it off. The problem is, she's still one step removed from reality, because she also can't find someone to hire, explain to them what she wants, remember what she agreed to or when the painter might be coming. I would have to do all of that, and on my to-do list, hiring a painter would never see the light of day. 

Joyful echos

If you have no short-term memory, good things are like echos.

Whenever May sees my digital reader of late, she asks about it. So yesterday I gave it to her and showed her how to read a book I thought she would like. For the rest of the morning, every time I passed through the living room she looked up from the reader and said, "I love this thing. This changes everything. It's so easy. It may be bad for the rest of you, because I may just read all the time and forget about fixing dinner." 

While we were doing chores in the afternoon, it kept popping into her head how much she loves the reader, and how happy it makes her, and she told me about it over and over as if for the first time. Again at bed time, as she held it in her hands under the bedside lamp, she told me how easy it was to read. I finally had to ask, was reading actual books all those years really such a hard thing? All that lifting and page turning?

It's entirely possible that today she'll forget she has it, which only means she'll get to live the discovery all over again.   

Lunch pressures

For lunch yesterday, we went to one of our usual sandwich shops where you order at one end of the counter and pay at the other end. As we approach the order station, I always remind her of what she has ordered before to protect her from the vastness of the menu and the pressure of the speed-crazed order-taker. But still, the order-taker has questions. "What kind of soup?" "Do you want bread with your soup?" "Would you like a drink with that?" Each demand for a quick decision produces a mild panic and she looks to me for help. She made her own soup choice; I made the bread decision; on the drink issue I pointed her toward the cooler, and she ran off to grab a physical container, which is a whole lot easier than trying to hold a list of options in your head until you can pick one. 

Debbie's coming

Yesterday, you wouldn't have known anything was wrong -- unless this seemed a little odd to you:

She came upstairs to tell me Debbie was coming to see her. I asked her when she was coming, because I'm the one who has to keep track of these things. Here's how it went from there:

I don't know, soon.

Soon like this weekend?

I don't know. I'm sure she probably told me.

Well if it's soon, we need to know the actual day.

She'll call me again and tell me. 

The last time Debbie came, she called while Annie was here. Luckily, Annie answered the phone, got all the details, and passed them on to me. For days before the visit, May would ask, "Now when is Debbie coming?" or even "It seems like someone is coming to see me but I don't know who or when..." And I would be able to tell her. It made her happy each time I did. Debbie arrived on a Saturday and took May on a blow-out shopping trip. When it was over, and Debbie was gone, May said, "That was such a wonderful surprise! The doorbell rang, I went to the door, and there was Debbie! I had no idea she was coming."

Oh wait! There was one more thing. I was flipping through the channels and came across the Pretenders at the Montreux Jazz Festival. We stayed there long enough to see Chrissie Hynde stop her band in the middle of Don't Get Me Wrong and switch to a jazz rendition of that old chestnut. May said, "Didn't we just see that the other day?" Let's see now, Chrissie Hynde doing a jazzy Don't Get Me Wrong at Montreux -- no, I don't think I've ever seen that. 

This "false familiarity" happens a lot. Walk into a restaurant in a town you've never been to before, and she will swear you were just there a few days ago. 

The holidays

In early December she would ask several times a day if anyone was coming for Christmas, or if we were going anywhere. I would answer, "No one is coming. We're not going anywhere. It will just be you and me and we'll go to lots of movies." She thought that sounded great.

On December 18th, she asked me what day it was. I told her it was the 18th.  "Oh," she said, "almost my birthday." I said no, it's almost Christmas; your birthday is in January. She took me to the kitchen where she had hung a 2009 calendar. 

Trusting in this calendar, she had jumped past Christmas and was now in January. We did this several days in a row before I could get her back into December. Then she remembered that we were supposed to be going to movies. We saw two in two days, skipped a few days, and then headed out to see our third movie. 

On the way she said, "When was the last time we went to a movie...", more like a statement of our spotty movie attendance than a real question. I told we were on our way to our third movie of the holiday season. She asked what we had seen. I told her we only went to one-word titles; we had seen Milk and Doubt. Now we were stepping one article outside our comfort zone by going to see The Wrestler. She thought that was funny, but she clearly didn't remember what I was talking about. 

58

On November 14, 2008, the neurologist told us he had found nothing in all her test results to indicate a cause for her problems with memory, thinking and managing everyday tasks. Which left Alzheimer's as the most likely culprit. May is 58 years old.