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She Knows Me. She Loves Me. But She’s Not Sure of My Name.

After the sitter left yesterday, I walked over to Kate and sat down on the ottoman in front of her chair. Here is a portion of our conversation.

RICHARD:    I’m glad to see you. I like being with you.

KATE:            I like being with you.

RICHARD:    I love you.

KATE:            I love you too.

She leaned over and kissed me.

KATE:            What’s your name?

RICHARD:    Richard Lee Creighton

KATE:            What’s my name?

This conversation is something else I never expected when we learned of Kate’s diagnosis. Had I known at the time, I would have been sad just thinking about it. Now I am living with it every day, but I find that I am not sad. How could that be? I’m not entirely sure. I think that is largely because her changes have been so gradual. That has given me time to adapt to each change. That doesn’t mean I meet each change without any sadness. The first few times I see signs of change, I do feel sad. So far that has been followed by the discovery that we still are able to enjoy ourselves. I know that will not always be the case. From the beginning we both understood how this is likely to end. I don’t mean specifically of course, but we know from experience how it usually unfolds. I am especially mindful of that right now as she slowly drifts away. I find myself experiencing a strange mixture of sadness and joy. Fortunately, our good times still outweigh the sad ones. We will hold on to these as long as we can.

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Tired, Confused, but Enjoying Life

Our lives now are a interesting mixture of good and bad things. As I have said in earlier posts, Kate has been getting up earlier the past few days. That was true again yesterday. For me, that is good news. It gives us a little more time together which I feel is especially important on the days we have a sitter. The flip side of that is that she has also been tired during the day. The past two days she has gone straight to bed upon returning home from lunch. I’m not sure how long she rested (slept?) on Wednesday, but yesterday it was almost two hours. She might have rested longer had I not waked her.

We went to Barnes & Noble where we had another one of those confusing times when she didn’t realize I am her husband. She was on her iPad. I was on my laptop. I reached over and put my hand on her arm. She said, “Are we friends?” I said, “Very good friends.” She gave me a skeptical look. At first, I thought she was playing with me, but it became clear that she was not. I said that we had been married 55 years. She looked surprised and said, “Let’s talk about this later.” That comment suggests that she expects us to be together even though she is unsure of who I am. It also suggests a certain comfort level in being with me. These moments tend to catch me off guard. My rational mind leads me to think that she either knows me or not, and that would cause her to behave in different ways. Instead, she acts like everything is normal. Then she says something that doesn’t match what I would expect. There is so much that I don’t understand.

I am just now beginning to understand that when she asks where we are “right now,” she often thinks we are out of town, almost always in her home town of Fort Worth. As we were coming home from lunch yesterday, she said, “Well, it’s been a nice trip.” On the way home from dinner last night, she said, “Where are we going to stay tonight?” I told her we were in Knoxville and would stay in our own house. She liked that. This confusion might account for the fact that she frequently picks up things to take with us when we leave the house. Often it is a tube of toothpaste and one or two toothbrushes. I have started suggesting that she won’t need them wherever we are going and might as well leave them at home. That has presented no problem. She is becoming very compliant. I suspect that she recognizes she gets confused and trusts me to keep her straight.

The change in her desire for help with her clothes has been dramatic in the past week. It was just a few days ago that she first asked for help with her bra. She has wanted help each day since. She was glad to hear that I have ordered new bras designed for seniors that fasten in the front rather than in the back. I’m not sure that will enable her to do it herself, but I thought it was worth a try.

Last night, we went to Casa Bella for opera night. It was another good evening. Kate expressed a good bit of enthusiasm after each song. Fortunately, the rest of the crowd did as well. She expresses her pleasure audibly during the music. It isn’t too loud. I doubt that anyone other than those sitting at the same table realize it, but I wonder if this could become a problem later on.

She went to bed right away after we got home. That is unusual and is an indication of how tired she was. This morning she got up to go to the bathroom shortly before 6:00. I got up when she came back to bed. As she got under the covers, she said, “Let’s not do this again.” I had no idea what she meant. When I went to the kitchen for breakfast, I noticed that she had not used our bathroom but the one off the laundry room. I am guessing that she forgot about our bathroom. That is not unusual. She has always used the other bathrooms more often than our own.

Despite all the confusion and the changes, we are still enjoying ourselves. I am amazed and happy. That is something I never expected this late in our journey.

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Halloween on Our Street

Kate and I moved into our present house 21 years ago this past July. Not long after that, I chatted with some neighbors while I was out walking. They asked if anyone had told me about Halloween. I told them I hadn’t, so they proceeded to inform me. I don’t recall any specific numbers, but I was surprised to learn that we get a lot of trick-or-treaters. We got very few at our previous houses, and the last one was only a quarter of a mile from the new house.

Since that time, we have discovered just how big a deal Halloween can be. During our first year or two we had around 200, but each year it has grown. Last night, we set a new record with almost 850 children who stopped by the house before we ran out of candy at 8:15. You might think that’s a lot, but it’s far from a record on our street. Our neighbor across from us said they had around 1200. They had more candy and continued until after 9:00.

We may not have the highest total number of trick-or-treaters, but we’re the only ones serving water. Yes, that’s right. I said “water.” This is something about which Kate has taken great satisfaction over the years. As we were making plans the first year, she said, “I’ll make sure to have plenty of water.” I said, “Water? I can’t believe kids would like that. They’re after anything with sugar in it.” She insisted. We had water, and to my surprise, it was well-received. As the number of visitors increased, I decided to buy a 5-gallon cooler for the water. Even with that, we have to refill it once or twice. After running out of candy last year, we had up to 20 people at a time waiting in line for water. That would have happened last night if we hadn’t run out of cups, 350 of them. We refilled the cooler twice. We dispensed about 11-12 gallons of water, so I am acknowledging to all that Kate was right. There really is a market for water – even on Halloween night. You don’t suppose that it was Kate who provided that knowledge to all those companies that bottle and sell it everywhere we go?

As you might expect, all this requires a little planning and coordination. Our first year in the house, I realized we were going to run out of candy very early and quickly went back to Target for more. We still didn’t have enough. We also learned that it made no sense to stay in the house and wait for the doorbell to ring. We found it much easier and efficient to sit outside. Kate tends to the water and I give out the candy. Of course, there are times when I have to go back inside to replenish our supply. Sometimes Kate would be alone for a few minutes when a large number would arrive at the same time.

Although it’s been almost eight years since Kate’s diagnosis, last year was the first time I felt that she had any trouble with her role as the “Water Lady.” I suspected then that this year would be different, and it was. For several months, I had planned to get someone to help me and just let Kate enjoy the children. About six weeks ago, I discovered that a couple that has been helping us with some landscaping goes all out for Halloween. The husband told me he and his wife had heard about the large turnout we have on our street and wondered if his wife and daughter could come to the house to see first hand what it is like. I told him that would be great and that I could put them to work. That worked perfectly. The daughter took charge of giving out the candy, and  her mother assisted with the water. Kate started out the evening by filling the cups with water. She was very slow. Ultimately, I started filling the cups. I was also in charge of replenishing both water and candy as needed.

Kate got cold and wanted to go inside. That left my two helpers and me to take care of things which wasn’t a problem. It’s just that I was hoping Kate would derive more pleasure from being with us. I felt this was her last time to be a part of things. I doubt seriously that she is likely to participate at all next year. Perhaps, the saddest part for me is that she never seemed to recognize that she was behind our having water in the first place. She used to have fun reminding me that it was her idea, and that I was wrong about its popularity. Last night she expressed very little enthusiasm for the entire affair. She did enjoy seeing the children for a while but tired of that much earlier than I would have expected.

So it was a successful night for trick-or-treating but also sad to think that this long-standing tradition will not be the same again.

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Dinner with Friends

Two weeks ago, I got a call from Marvin Green. Kate and I met him and his wife, Angela, ten or fifteen years ago when they joined our church after his retirement as a Methodist minister. Their daughter and her husband, both Methodist pastors, married our daughter and her husband 27 years ago. Marvin served as my backup Sunday school teacher when I was out of town and also led my dad’s memorial service. We have gotten together with them periodically for lunch or dinner since Kate’s diagnosis. It had been a while, and he was calling to see about our getting together. We did that night before last at Bonefish Grill.

We have always enjoyed socializing with them. This time was no exception. We were in such active conversation that we never got around to what I had been most interested in hearing about. They recently returned from a trip to Ireland during which they hiked from one town to the next during the day and spent the night in B&Bs. I guess that provides a good excuse for getting together again soon.

While Kate was not an active participant in our conversations, she got along well. I suspect Angela and Marvin didn’t notice much, if any difference, since the last time we were together several months ago. In addition to our own conversation, we saw two church members who were leaving shortly after we came in.

Toward the end of our meal a woman approached me, and said, “I know you, but I can’t recall from where?” I’m not sure what prompted me except that she is a very humorous and talkative woman, and I answered, “I was your first husband.” That led to an extended conversation. I told her our real connection was at Casa Bella on one of their music nights. Every time she speaks to me, she asks me to guess how old she is. I always guess around 70. She is actually 87 but turning 88 today. She is also the daughter of a man who had operated a clothing store that was well-known by folks who grew up in the city. It made for a fun way to end our evening.

I mention this because experiences like this do a lot for both Kate and me. As I have noted elsewhere, eating out has been valuable in preventing any feelings of isolation, something that often accompanies couple who travel this same road. It is even more than that. The experience of eating out with friends adds an extra measure of pleasure to our lives, and we are especially grateful for those occasions.

Our dinner with the Greens came a few days after the Robinsons visited us for lunch on Saturday. Since our relationship extends back to our undergraduate days at TCU, maintaining that connection is especially important. There are only a handful of couples we can say that about. As the years go by, the value of these friendships becomes increases. That is especially true for a couple living with Alzheimer’s.