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From Confusion to One of Our Tender Moments

This morning Kate didn’t know I was her husband. I am glad to say that had changed by this afternoon. I don’t mean all confusion was gone but that she at least called me by name and said something about our being married. As we drove to dinner at Chalupas, our favorite Mexican restaurant, she said, “Thank you for being so patient.” That began a conversation (“soliloquy” might be more accurate) that lasted for over an hour in the restaurant. There was much repetition as she said things like, “You are so patient with me.” “I like being with you. It’s not just that you take me places.” “I like the way you treat people.” “What would I do without you?” “You’re a natural caregiver.”

The tenderest moment came as we were finishing our meal. By this time I had reached across the table and taken her hand. She looked at me and said something complimentary. Then she started to say something else and stopped. She said, “No, that’s silly.” I pushed her to tell me. At first, she wasn’t going to say. Then she said, “Would you think of marrying me?” Before I could respond, she said again, “Oh, I know that seems silly.” Then I looked into her eyes and said, “I have a surprise for you.” She said, “What?” I said, “We are married, and I love you.” She was immediately touched and tears filled her eyes. Then I was touched, and here we were sitting in a neighborhood Mexican restaurant, a far cry from a romantic place.

Earlier today I read a tweet by Ann Campanella, author of Motherhood: Lost and Found. She said, “Blessings and loss are so often intertwined in our lives.” I replied that Kate and I frequently have such experiences. Little did I know that we would have one of those tonight. The loss of her not remembering that we are married was overshadowed by her ability to appreciate my caring for her, by her proposal of marriage, and her tender response when I told her we are already married.

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More Confusion This Morning

For the second day in a row, Kate has not known my name or that I am her husband. I checked on her around 9:30 to see if she were awake. She looked up at me as I walked into the room. She didn’t say anything. I told her it looked like she had had a good night’s sleep. Then I asked if she wanted to get up or continue to rest. She didn’t hesitate in choosing to stay in bed. Shortly after 10:00, I went back to her bed. I wanted her to get up so that I could get her to lunch before the sitter arrived. I told her I would like to take her to lunch. She was agreeable and slowly got up out of bed with a little boost from me. She is beginning to want my assistance when she gets out of bed, the car, or some chairs.

She said she wanted to go to the bathroom and asked where it is. I pointed in the direction on the other side of the bed and said, “It’s right over there.” She didn’t understand. I told her I would show her the way. Once she was in the bathroom, I left her and went to the kitchen. About fifteen minutes later, I returned and saw that she was sitting in a chair beside our bed. She hadn’t dressed and said, “Are you the doctor?” I can’t be sure what prompted her question, but the fact that she was undressed and might not have known me might have had something to do with it. I told her I wasn’t a doctor, that I was her husband. She gave me a look of disbelief and said, “What’s your name?” I told her. Then she asked her name.

I asked her if it was hard to believe that I was her husband. She said it was. I said, “It seems like you trust me.” She said, “Why do you say that?” I said, “Well, you’re sitting there without your clothes on and you don’t seem concerned at all.” She said, “I guess you’re right. You’re a nice guy.” I didn’t pursue it further but helped her with her clothes, most of which she took care of herself.

The subject of who I am came up again in the car on the way to Panera. She still found it hard to believe I am her husband. She asked my name again. I mentioned that we have children. She was surprised and asked who they are. When I told her their names, she said that she liked those names.

Before taking our seats at a table, she asked if I would mind getting her drink. That is one of only a few times she has asked for my help with the drink machine. Sometimes I volunteer to do it for her when we have to take a seat that is not close to the machine. She didn’t say anything more about me or the children. She was occupied with her puzzles.

Since we were running late, I called the sitter and asked her to meet us at Panera. When Marilyn arrived, Kate was very cordial as she usually is. When I told her I was going to Rotary and the Y, she said, “What am I going to do?” I told her that she and Marilyn could stay at Panera for a while and then go home anytime they wanted. She asked if Marilyn knew how to get there. I told her she did and left for Rotary. It was one of those times that I felt all right leaving her.

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Recovering from Morning Confusion and Thinking about Life and Death

After her confusion yesterday morning, Kate remained in bed another hour before getting up. I didn’t see any sign of the confusion I witnessed earlier. In fact, I don’t recall her asking my name or hers the rest of the day. When she was dressed, we went directly to lunch. At lunch, she said something about our being friends. I told her we are very good friends. Then she said, “I thought that we were married.” She had obviously recovered from her confusion.

That is a good illustration of the fact that most changes occur a little bit at a time. She started with occasional slips on the names of acquaintances, then grandchildren’s names. Gradually, they became more frequent. Then it was our children’s names. Now it is mine and her own. Memory comes and goes, and will ultimately disappear completely. She is gradually forgetting that I am her husband. I am hopeful that for a good while she will hold on to her feelings that I am not a stranger but someone she will continue to love and trust.

As we took our table at lunch, I saw a former client and his wife at a nearby table. Kate and I went over to speak to them. When we shook hands, he said, “How are you doing?” The way he asked it sounded as though he knew about Kate’s Alzheimer’s. I gave him my usual response that we are “doing remarkably well.” As we turned to his wife, he said that her cancer had returned. I asked about treatment. She said that she had already had surgery as well as chemotherapy and radiation and decided not to pursue anything further. I suddenly felt a kinship with them that I hadn’t felt before. Her husband said they were taking it a day at a time and enjoying themselves. I told him that is exactly what Kate and I are doing.

Yesterday afternoon, we attended a memorial service for a church friend. Her husband is one of several men I contacted a few years ago to explore interest in getting together periodically. He was the only one who declined. I regretted that because I got the impression from our initial conversation that their situation and ours were very similar. We encountered them occasionally at two of the restaurants we frequent. Today’s service confirmed my belief that we shared a number of things in common. He and his wife were extremely close, and they had been able to enjoy life as we have done. I also recall that her decline had been very gradual like Kate’s. Their son spoke at the service and talked about his mother’s Alzheimer’s. Like us, they did not have to face any challenges of other health issues or personality changes. Although the son mentioned the changes brought on by Alzheimer’s, it was a very upbeat account of his mother’s life and what she had meant to her family.

I hesitated going to the service because I didn’t want Kate to be bothered by anything that might be said. I was thinking of passing references to Alzheimer’s. If I had known how much the son was going to say about his mother’s symptoms, I would not have gone. Fortunately, I don’t think Kate picked up on any of it. After the service, she didn’t say a word about the service or anything that was said. She was just the way she would have been had there not been any mention of Alzheimer’s.

In the last three years, two of the spouses and one of the caregivers with whom I had been in contact died. A week ago, I attended a joint memorial service for a husband and wife, both with Alzheimer’s, who passed away within 6 days of each other.

The passing of these friends and the recurrence of cancer for my client’s wife causes me to think about more about Kate and how long she will be with me. In yesterday’s service, the son mentioned that his mother’s decline had been very gradual until the last few months. I hope that will be the case for Kate. I know she would not want to linger for years. That’s a hard thing for a spouse or other family caregiver to say. When I have heard other caregivers express this sentiment, I have recoiled. Now, I am beginning to understand.

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A Confusing Start

It is a few minutes after 9:00. Ten minutes ago, I heard Kate cough and went to check on her. I poked my head in the room and saw that she was awake but still in bed. I walked over to her, kissed her on her forehead and said, “Good morning.” She gave me a puzzled look and we had the following brief conversation.

KATE:            “Who are you?”

RICHARD:    “I’m Richard Creighton, and I am your husband.”

KATE:            “Who am I?”

RICHARD:    “You are Kate Creighton.”

KATE:            “I don’t know who I am?”

RICHARD:    “I can help you with that. You are the daughter of Elizabeth and Charles Franklin who loved you very much. You were very special to your daddy.”

KATE:            “What are their names?”

RICHARD:    “Elizabeth and Charles Franklin.”

KATE:            “Who are you?”

RICHARD:    “Richard Creighton, your husband. Does that surprise you?”

KATE:            “Right now, I just feel like I’m crazy.”

RICHARD:    “You’re not crazy.”

KATE:            “I hope not. It sure feels like it.”

RICHARD:    “I think you’re just a little bit groggy. Would you like to get up or rest a little more?”

KATE:            “Rest.”

RICHARD:    “I want you to know that I am here to help you if you need anything. Would you like me to stay here in the room with you?”

KATE:            “What do you want?”

RICHARD:    “I was going to the family room.”

KATE:            “That would be all right.”

RICHARD:    “Call me if you need me.”

KATE:            “What’s your name?”

RICHARD:    “Richard Creighton. You could just say ‘Hey” if that would be easier.

KATE:            “Oh, good.”

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Deja vu and Salivation

Earlier today, I realized that I haven’t said anything Kate’s deja vu experiences in quite a while. That’s because they are much less frequent than they used to be. They had become so commonplace that I’m surprised that it took so long for me to notice the change. Now that I think about it, I remember her mentioning having been to several of the places we visited while we were in North Carolina at the end of September but not since. For years, she had “recognized” people and places that she had never seen before. The only similar thing that occurs now is her thinking that our house is either a previous house in Knoxville or her family home in Fort Worth.

One other issue is her  salivation. Over two years ago, she began spitting out her saliva instead of swallowing it. We experimented with several possible solutions recommended by her doctor. None of them worked. We even went to a gastroenterologist who felt the problem was a result of the collection of saliva in the throat which often happens as we age. Her dentist told us the same thing. I finally gave up. I started keeping a roll of paper towels in the car as well as a supply of unused paper napkins from places we eat. That had nothing to do with minimizing the problem. It only helped to prevent her wiping the saliva on her clothes. I bring this up now to say that the problem continues but seems to occur somewhat less frequently. I am still hoping it will disappear like the deja vu experiences.

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Kate and Comments Related to Sexism

Before leaving for Panera this morning, I put out the money for our housekeeper. Kate saw the money and said, “Men have all the money.” A moment later, she added, “But that won’t always be.” In the car, she said something about men not thinking that women are smart. As I have mentioned before, Kate is not a kidder. I think this is her effort at humor. I say that because she doesn’t sound at all bitter when she makes these remarks. Whatever the cause, it has surprised me because it is so unlike her to make comments like this.

She had another surprise for me this morning. As I was about to get in the car, I remembered that I had forgotten her cup and went back to get it. When I returned with it, she said something about having to wait on me. I always find this humorous because she never seems to realize how much time I spend waiting for her. I always keep myself occupied until she is ready, so I have to shut down my computer and a few other things when she is ready to leave. She doesn’t want to wait a minute for me. When she is ready, she wants to go. The surprise this morning was that after she commented on having to wait for me, she said, “Of course, I keep you waiting for three hours. Well, not that long.” I was shocked that she recognized that I wait at all. Sometimes she says, “Don’t count me out yet.” I am afraid I often do underestimate her abilities.

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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.