What 'progressive' means

At our last support group meeting, they gave May a book on "progressive memory loss" and asked her to bring it back this week so someone else could read it. She's been working on it every day, like a homework assignment. Yesterday she looked up from her reading and said, "So, do I have progressive memory loss?" I said yes. She looked concerned and I said, "You know when you leave your purse somewhere and we have to go back for it and I show a hint of displeasure and then you say, 'You know, it's only going to get worse?'" She recognized that scene. "Well," I said, "that's what you're talking about--it's only going to get worse because it's progressive." That seemed to satisfy her.

A troublesome schedule

At our first support group meeting, they gave both of us a folder stuffed with information. There's one sheet of paper with all 12 weeks laid out with guest speakers and areas of emphasis. Every few days May comes to me with this sheet of paper in her hand and a very worried look on her face. She can't find the words to ask me about it. She holds it up and says, "This ... these ... it's something I think I'm supposed to do ... but ... I don't know..." And I say those are the 12 weeks of the support group we're going to, not to worry, it's every Wednesday, we're both supposed to go, and we're doing it. 

Last time this happened, I asked her, "Do you know what month it is?" She said no, but looking down at the schedule, she started making guesses: "March? April?" I told her it was March, we had already been to the sessions on March 11 and 18, and we would go again on the 25th. "And you like it," I reminded her. "Oh yeah, they're nice," she said.  

Gone

I woke up last night about 1:30 and her side of the bed was empty. I went back to sleep and woke up again about 4:30 and she was still gone. I got up and looked in the other bedroom saw that she was in bed there. She got up and went to the bathroom around 6 and came back to the master bedroom. I asked where she had been and she said, "I guess I didn't want to be here." I asked what she meant by that and she said she didn't know. I said, "No reason?" And she said, "Yeah, no reason." 

What a difference a week makes

When I woke her up yesterday and told her we had to leave in 30 minutes for our support group meeting, she groaned and rolled her eyes. She was quiet on the drive into town. But as her group filed in and greeted her, she responded with smiles and friendly words. On the way home, she kept saying, "I really like those people. They're so nice, and they seem so free and easy. And it's good to be with people who are going through the same things you're going through." We picked up Adam at school, went out to eat, and then ventured into the minefields of bookstore browsing--and did quite well. Whereas last Thursday, she didn't want me out of her sight, today I was gone all day and she had a productive day with the laundry.  

Wednesday can't some soon enough

Last night, she came into the kitchen with a woe-is-me look and asked what time we had to go to our group session the next day. I told her we didn't have it on Monday and her whole body perked up with relief. I told her we would be going every Wednesday. This morning, same thing: she asked what time we had to be downtown and I said we're not going downtown today--it's every Wednesday. An hour later she walked into my workspace and said, "so we don't have to go to my stuff today?" I said no, Wednesday. And then I said, "I really enjoyed my session. I'm looking forward to Wednesday. Did you not like your session? Why are you dreading this so?" She said no reason, just her natural negativity. 

About 30 minutes ago she seemed to have it down, but wanted to be sure--"We don't have to go to my doctor stuff today, right?" Right. Just now she asked again and I said, "I think you keep a calendar somewhere because you keep asking what day it is. On that calendar you should put a big circle around every Wednesday." As I was writing this post she handed me a sheet of paper with the group sessions and dates written on it. "I wonder if these are the dates?" she asked. I said yes--those are the 12 Wednesdays that the group will meet. 

It's only 11 o'clock on Monday morning.  

No reaction, this time

Tonight she asked me again, "Do I have Alzheimer's?" I very matter-of-factly said, "Yes." She had no reaction.  

Face-to-face with reality

On Wednesday we began a once-a-week-for-12-weeks series of support group meetings. In the car on the way home May asked, "What do we do now?" I told her we're doing it--what we do now is go to these meetings every Wednesday; we're already taking the two approved drugs, and now we're in a support group." This brought her face-to-face with reality, and she cried on and off the rest of the day. She has known, of course, since mid-November that she has Alzheimer's; but the knowledge comes and goes, and I think gets blocked a lot too. 

On Thursday she didn't want me out of her sight. I had a 4 o'clock meeting, which wasn't too bad. But I was concerned that I was supposed to be in Chicago all day Friday. I told her I could take her to the Friday meeting and she could sit in the back of the office and read; she eagerly said yes.

We took the commuter train into the city Friday morning, which she described as "an adventure." It's a 20-minute walk from the train station to my client's office, which she greatly enjoyed. In the office, everyone went out of their way to make her feel welcome. She spent the morning copying phone numbers and addresses from one book into another. She spent the afternoon reading. Whenever I checked on her she said what a great place it was to spend the day, and how glad she was to be out of the house. The trip home was another treat for her, just riding the train looking at the houses passing by. 

We were both tired when we got home and we lay down on the bed, with the TV on for the news. She stayed only a few minutes and then said she couldn't rest with the TV on and was going downstairs. I fell asleep and woke up an hour later with her sitting on the bed crying. "Do you just want me to go away?" she said. I asked her what she was talking about and she said, "I think you don't want me around your friends." I told her she had just spent the day with my friends and everyone had a great time. She said she didn't know what she meant. 

She asked what was next for us and I gave her the same answer I gave on Wednesday. Finally she said, "So, do I have Alzheimer's?" I said yes, and she cried pretty hard. She eventually calmed down and asked me if I believed in God, and would I look for her when my time came. I told her I was 62 years old -- I might get there before she does. She asked me if I would stay here when she was gone and I said yes. She asked me how long she had. I told her no one, so far, would hazard a guess, but I thought she had another thousand days here in this house--and it would be a shame to spend those thousand days worrying about what came after that. She agreed, but we both know that when she was a little girl, she would start crying when her grandparents came to visit because she knew they were going to leave again. She went to sleep saying, I just want to watch those little boys grow up...we just have the two, right?" I said yes, just the two grandchildren.

An odd thing...

As I was gathering up my stuff to leave my client's office yesterday, May said, "But you haven't got your hair cut yet." I told her I wasn't going to get my hair cut; we were going to catch the 4:30 train. On the train, she studied the side of my head and said, "Did you get your hair cut?" I said no and she said, "Well I wondered, it doesn't look very short." Then last night, before I went to bed for real, she was staring at me from across the bedroom. "Did you get your hair cut today?" she asked. I said no, I didn't. This morning, as I sat on the other end of the couch from her, she stopped reading the paper and said, "Did you get your hair cut yesterday?" I'm used to getting the same questions over and over, and I just answer them as if for the first time as long as I can stand it. But this haircut question was making me self-conscious. Was there something wrong with my hair? So this time I asked why she kept asking me that and she said she didn't know. That of course reminded her that her brain wasn't working right, and she had a weeping spell. She's asleep now.  

Who's Adam with?

Adam's other grandfather, Pat, and his wife Kate have helped with all of Adam's birthday parties. Last year they moved to our town so they could see more of Adam. Kate bought most of Adam's winter shirts and pants this year. They came to our house for last 4th of July. We were guests in their house last Sunday and had a very nice time. Today I took Adam to their place for a sleepover. When I got home, May started this conversation:

"Is this grammy a real grammy or just somebody he knows?"

"Somebody who knows?"

"Ted. Where you left Adam--is that just somebody Ted knows or is it a real grammy?"

"It's Kate. Pat's wife. Ted's dad's wife."

"Well Adam's with someone else and I just didn't know who it was, that's all. I want to know who he's with."

"He's with Grandpa Pat and Kate. We were at their house last Sunday. We sat at their kitchen table and told stories. We had a good time."

"Okay, well that's what I wanted to know. I just wanted to know who Adam was with." 

Warning signs

She didn't look very happy at bedtime last night. I asked her if she was okay. She said no, she was tired of me getting mad at her all the time. I apologized and said the grocery store pushed all my buttons and I'd try to do better. She said if I would only let her drive, she would gladly go back to doing the grocery shopping by herself. Then, while I thought we were still on the grocery issue, she switched to a mailer we received about an early-onset support group that is starting up, claiming that she had told me about it and I hadn't done anything to follow up. The facts are that I found out about the support group, talked to the people who are doing it, requested more information, told her about it and then when the letter came, she opened it and didn't tell me about it for several days. Then this morning I walked into a scuffle between her and Adam, as she was taking away the gel pens we bought for him at the grocery store last night. She claimed that he was taking her pens. I told her they were his. She reluctantly gave him three of the four pens and tried to keep one for herself. Then she turned on me and asked, "Well didn't we buy pens for me last night?" What am I to say? No, we didn't. She left the room in a huff, but was okay when she came back about 20 minutes later.