The Mixture of Happy and Sad Moments

Throughout the time that Kate and I have been “Living with Alzheimer’s” I have repeatedly told people that she is doing “remarkably well.” That’s exactly what I would say if someone asked today. I’ve tried to be open about the fact that a simple answer doesn’t adequately convey what life is like for us, but it does express what I believe is a central truth. We have lived well from the very beginning, and I have wanted to communicate in my daily interactions with people and through this blog that it is possible to experience joy while living with dementia.

On the other hand, living with this disease is no cakewalk. Since Kate’s diagnosis 8 years and 4 months ago, our world has gotten smaller. One thing after another has dropped from our lives. At the present time, I sense that we are undergoing a more rapid change. We have had an abundance of happy moments. They used to occur all day. Over the past year, we have encountered moments of Kate’s confusion and fright. It seems that we are beginning to experience and happy and unhappy moments during the same day.

Yesterday was a good example. The morning (starting at 3:30) was rocky. When I woke her at 11:00, she got up easily and was in a pleasant mood. She is, however, more sensitive to anything I do that rushes her. While dressing, for example, she wanted direction about what to do. I said, “Let’s put on your bra and pants and then your top.” I had given her too much information. She snapped at me, “Wait a minute.” That is something I hear more often these days. I told her I was sorry. Then she said, “I’m sorry. I shouldn’t have said that.” She wasn’t as cheerful after that. This kind of exchange between us is more common now. I have to be very careful to simplify all my instructions.

On the way to lunch, I played music that I know she enjoys. Before we got to the restaurant, she was her cheerful self again. That continued through lunch. After lunch, we relaxed at the house until it was time to pick up a friend we were taking to see Mamma Mia at a local theater. She had enjoyed the movie, and I was optimistic that she would like the theater production as well. After we were in our seats and the show was about to begin, she wanted something to drink. I told her that food and drinks were not permitted in the auditorium. She became irritated about that. She is less patient than she used to be. When she wants something, she wants it right then. Fortunately, she didn’t create a problem, but she wasn’t happy. During the show, Kate kept looking at me and rolling her eyes. She wasn’t enjoying herself. At intermission, the three of us talked briefly. As it turned out, none of the three of us thought the quality of the performance was up to par. We decided to leave.

We went to a nearby Starbucks where we had a nice visit with our friend. I think Kate enjoyed herself, but it was a challenging experience for her. There was so much she didn’t understand. She kept asking for clarification and repetition of names. I have noticed the same kind of thing in other social situations. In every case, including the one yesterday, the people we have been with understand about Kate’s Alzheimer’s, but it does make a change in the dynamics of conversation.

We took our friend home and then went to a Mediterranean café. While I went to the counter to order, Kate arranged paper napkins and utensils on the table. She used napkins as a placemat with the knives and forks neatly arranged. We had a very pleasant meal. Kate is, however, getting messier. A Greek salad came with her meal. She doesn’t like salads and throughout the meal took the greens off her plate and put them on her napkin (placemat). That created a mound of salad around her plate. She also had rice. That meant a fair amount of rice went with the greens. It turned out that her using a napkin as a placemat was a good idea. When she was finished, I simply picked up the napkin with the greens and put it on my empty plate.

I don’t mention these things because they are big problems. They are not. They are really minor. My point is that Kate is changing. She is beginning to exhibit more of the signs that accompany dementia. It saddens me to see this and to recognize the future is becoming imminent .

Despite the changes that have occurred in the past, we focused on the good things that remain. I am hopeful that we will be able to continue doing so as we experience a greater mixture of happy and sad moments. I suspect that will be harder.

More Confusion and Confusion

Shortly after midnight last night, Kate and I had what was almost a replay of a conversation we had yesterday morning. I had gotten up to go to the bathroom. When I got back in bed, I noticed that she was awake. She said, “Where are we?” That began another conversation that lasted until 1:35. She said she didn’t know anything. As I had done the night before, I said, “That must be scary.” She said, “Very.” From there I gave her my name and hers and our relationship. I followed that by lots of the same family information I had given the last time.

Several times she said, “I don’t understand why this is happening.” I told her I didn’t either but that it had happened other times and that she improved as we talked about our lives and family. This conversation was unusual in that she was able to grasp the change in her memory (or the way she felt) as I fed her information. At one point, I asked if I was overwhelming her. She said, “No, I can tell it’s helping.” She suggested that she was remembering a few things and that made her optimistic that her memory would come back. It’s been close to a year since she had her first experience like this.

At that time, it brought about a more intense emotional response. I described it as a “panic” or “anxiety” attack. This morning’s experience was not nearly as intense, but it had an element I had not heard since last summer. She made reference to her doctor’s telling her she might get better. She said the doctor also indicated that she might not. Nonetheless, she was encouraged last night. She also talked about the support she had received from friends. This time, however, she mentioned that her memory might not come back “all the way.” I told her no matter what I would be with her to help. We both said that whatever happens, we would deal with the situation, that we were good at adapting.

The conversation ended when she said, “I think I’ll go back to sleep now.” I asked if she felt relaxed. She said she did. The crisis was over. What is lingering in my mind now is that she seems to grasp that she has something that she won’t be able to conquer. She may improve, but the problem won’t go away. Once again, her intuitive thought processes are working. She doesn’t have a name for it or understand a way to beat it, but she knows something is wrong.

Just before 9:00 this morning, I saw on the video cam that she was starting to sit up in bed. I went to her. She smiled, and I walked over to the bed and sat down beside her. I was expecting that she would be back to normal again. She wasn’t. She was just as confused as she was earlier this morning. The difference was that she wasn’t in the mood to talk about what she was experiencing. She kept saying (not in rapid succession), “I don’t know what to do.” I asked if she would like to go to the bathroom. She asked why. I told her that she usually wanted to go to the bathroom when she woke up about this time. She repeated that she didn’t know what to do. I tried the same approach that had been successful in our two previous midnight conversations. She didn’t seem to pay attention. I think she was still tired and wanted to go back to sleep. I asked if she would like to see some pictures of her family. She didn’t, but I showed her a wedding photo of our daughter and brought in the “Big Sister” album to the the cover photo. She responded with a smile when she saw it, but she wasn’t ready to look at anything else. I asked if she wanted to rest a while longer. She nodded. I asked if she would like me to stay in the room with her. She did. That’s where I am right now. She opened her eyes a few minutes ago but is asleep again. We have a 12:30 reservation for lunch. I think I’ll let her sleep until 11:00 or 11:30 before waking her unless she gets up on her own.

I don’t like all the signs I have seen over the past week or two. This isn’t a change for the better.

Melancholy Day

Yesterday was a different kind of day. The past couple of days I’ve had wonderful connections with friends and family that go back to my college days at TCU. In one case it went back to the fourth grade. At this stage of life hearing from people you have known over a lifetime is especially precious; however, there were aspects of each of them that gave me something of a melancholy feeling yesterday.

It began the day before when I tried to reach my childhood friend and neighbor and discovered she is in the last stages of dementia and unable to communicate with me. Then yesterday morning I received an email from one of Kate’s cousins. She had written a very touching poem as a tribute to her husband who was diagnosed with dementia and died in 2013. Yesterday was his birthday. It was a beautiful expression of her love for him. A little later in the morning, I read an email attachment from a college friend and widow of one of my college roommates who had dementia. It was a tender story of their lives together. My former roommate took up poetry in a serious way in his later years. She included a poem he had written to her on an anniversary in 1996. I am sure it meant a lot to her at the time and even more so now.

After Kate and I returned from lunch, I was surprised to see a package on our front porch. It was from another TCU roommate. We had been out of touch until the past six to eight months. He sent some autobiographical writings that he had prepared for his children. He was an outstanding singer in college, and we had sung in two different choral groups together, but I hadn’t kept up with his career at all. I also learned that he had lost his wife to cancer. Reading about his experiences summoned up feelings I often have at memorial services. It’s a feeling of “knowing” people but not really knowing much about them. I am glad to have connected with him now but wish that I had been in touch with him before.

Add Kate’s situation to this mix of connections. Her Alzheimer’s continues to take her in the only direction it can, and now she has a cold. My feelings for her are the same as those a parent has for a sick child. After lunch, we came back to the house where we spent the rest of the afternoon in our family room. Kate rested on the sofa while I went through the writings of my former roommate. As I reflected on my friends’ memories, I looked over at Kate. Despite her cold, she was lying there peacefully with few of her memories left and no sense of the future or just how precious our moments are right now. I felt sad for her. I don’t like to see her facing the symptoms of a cold much less those that accompany her Alzheimer’s. Like my friends who lost their spouses I am grateful for memories of the past, but, unlike them, Kate and I still have time to make new ones. They will be quickly lost for her, but I will remember.

Sad Moments

Yesterday I mentioned the sadness that accompanies special holidays, events, or occasions that one believes might be the last ones. They are not the only sad moments. There are plenty of others. I had one of those yesterday afternoon. It was almost 3:00 when Kate and I came back to the house after lunch. For a short time she looked at one of her photo books that she and her brother Ken had made for her mother’s family. I was glad to see her pick it up and sat down with her. It’s been a week or two since she had looked at any of her photo books. With her memory fading quickly, I was interested in seeing how well this one brought back memories. I was pleased that she was often able to recognize her various family members, especially her mother, father, and grandmother. It wasn’t long before she said she was tired and wanted to lie down. An hour later, I asked if she would like to get out of the house for a while. She did and got up to go to the bathroom.

I went to the laundry room to transfer clothes from the washer to the dryer. In a few minutes, I heard her say, “Hey.” This is becoming her common way of calling for me now that my name is slipping away. Until the last few weeks, she has been calling my name. I walked into the family room. She was standing there pointing to her wet pants. She didn’t say a word. She was like a little child who might have had the same experience. She just wanted me to help her. I felt so sad. Although she has had accidents around the toilet, this was her first experience when she was fully dressed. I said, “It looks like you had a little accident, but we can take care of that. Come with me.” She followed me to the bathroom where she took off her clothes, again with my help as one might do with a child. Then I got her some clean clothes. She thanked me. I told I wanted her to count on me anytime she needs help. This is the kind of experience I find the hardest to deal with. I don’t like seeing this disease bring her to her knees like this.

I had one other sad moment last night as she was getting ready for bed. She asked, “Who are you?” I told her I was her husband and that I loved her. I added, “And you love me too.” She could not believe either of these things. I went to the family room and got a photo book with our wedding pictures. I showed her several of her with her father and with me. She was convinced. Then she said, “What is your name?” Her memory of me is fading more quickly now and will soon be gone.

I hasten to add that she is remains very comfortable with me. She still mentions the good times we have had. It is clear that her memory comes and goes throughout the day. It’s not just a period of confusion in the morning. It’s almost like someone turns a switch on and off at random times. I am grateful for those moments when she does know who I am, but know what lies ahead.

Travel

This is Thanksgiving week, and we leave tomorrow to spend the holiday with our son Kevin and his family. As you would expect, Kate and I are approaching this trip in very different ways. This is very likely her last trip to her home state of Texas. I have been thinking about this trip for months. Her feelings for Texas are actually stronger now than they were when she was younger, but one of the things that disappeared with her memory is the ability to anticipate the future. I have been telling her for weeks that we are going to be in Lubbock for Thanksgiving. I’ve heard that the estimated length of time that a person at this stage of dementia can remember is a matter of seconds. As a result, she has no idea that we are going. She will enjoy the visit with family and being in Texas “in the moment” as she does with all her experiences.

There is usually a bit of sadness associated with “last-time” experiences. I think immediately of the time when a child leaves for college or gets married. Parents know that their lives will be changed forever. The sadness brought on by those experiences is partially offset by the pleasure we derive from watching our children take their place in the world as adults. That is very different from the anticipated loss of someone who is approaching the end of life. I derive much pleasure from my recall of our lives together. I believe we have made the most of our time, not only since Kate’s diagnosis but from the beginning of our courtship. We will continue to enjoy life together as long as we are able. I have to say, however, I cannot escape the sadness of these last experiences. I believe that is as it should be.

More Confusion in the Past Two Days

Changes in the Past Two Days

Two things happened night before last that are indicative of the kind of changes Kate is making. After returning home from dinner, she sat down with her iPad. It wasn’t long before she asked for help. It turned out that she thought the puzzles were photos and was trying to figure out how she could label them. At first, I didn’t understand that and tried to show her how to put the pieces together. She responded by asking me to put the pieces in place. I worked two puzzles and asked if she didn’t want to work them herself. She said something that made me realize that she didn’t understand they were puzzles. Then she said she was tired and thought she would put the iPad aside and work on it “tomorrow.” I told her I would put on some music she might enjoy. She said she would to get ready for bed.

After she was in bed a few minutes, I noticed that she was shaking. I asked if she were all right. She said, “I think I made a big mistake and hope I didn’t mess things up.” I asked her to tell me about it. She didn’t know what she had done. She just thought she had done something she shouldn’t have. I told her I was going to take my shower. She said, “When you finish, will you come to bed.” I told her I would even though that would be a little early for me. After my shower, she was still worried about having done something wrong. All I could do was hold her and try to assure her that everything would be all right. I didn’t convince her, but she gradually calmed down and went to sleep.

Over the course of her illness, she has had periodic episodes that involved her thinking I had told her something that I hadn’t or that someone was coming to visit that wasn’t. I can’t help wondering if she is going to experience more of this kind of thing in the days ahead. I hope not. In the past, what she has imagined has bothered her. I hope we can avoid that.

During dinner last night and afterward, Kate was especially confused. She always asks the name of the restaurant as well as the hostess and our server. She just asked more times than usual and also appeared to be struggling more to get it right. She works so hard to remember names and places.

We had the following conversation on the way home.

KATE:            “What are we?”

RICHARD:    “Do you mean the nature of our relationship?”

KATE:            “Yes.”

RICHARD:    “We are married. Are you disappointed?”

KATE:            “No, I’m glad. What is your name?”

RICHARD:    “Richard Lee Creighton.”

KATE:            “What is my name?”

We are working our way into a regular routine when we return home. She said, “I’ll follow you.” She was impressed with the family room. As in the past, it was as though she had never been here before. Then something new occurred. She saw her iPad on a chair and asked, “What is this?” I said, “That’s your iPad” She gave me a look that I interpreted as, “What’s an iPad?” I explained it was something that she could use to work jigsaw puzzles. I wish you could have seen the excitement on her face. She said, “Oh, I’d like to do that right now.” I was shocked that she didn’t know what her iPad is, but it obviously caught her attention. As with people whose names she can’t remember, she didn’t recognize what it was, but she knew it was something familiar.

She mentioned wanting to brush her teeth. I told her to follow me to our bathroom. When she walked in our bedroom, she said, “Oh, this is nice.” Once again, she seemed not to recognize having ever been here before. After she went to bed, she said, “It’s been nice to stay here.” Apparently, she thought we were out of town.

When I got into bed, I moved close to her and put my arm around her. She accepted that as naturally as ever. Then she said something that made me think she didn’t recognize that I am her husband. I said, “You remember that I am your husband, don’t you?” She couldn’t believe it. Then she said, “Could we talk about this tomorrow?”  It seems like she is making noticeable changes on almost a daily basis. I don’t like the direction in which we are going.

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.

Anxiety Attack in the Middle of the Night

About 1:00 this morning, I heard Kate whimpering. She put her arm around me and said, “I need you.” I didn’t ask what was wrong. Although milder than what I have observed before, I recognize the symptoms now. She said, “Who are my parents?” That led to a conversation that continued for about an hour. I told her about her parents, their names, where they were from, how a Michigan girl and a Texas boy met and married. She also asked about our children. I told her a similar story about them and their children. When I finished, sometimes before I finished, she asked again. She didn’t ask, but I also told her who she and I are and about our meeting and our courtship and marriage. The more I told her, the calmer she got. At one point when I reminded her that our courtship had revolved around my work at a funeral home, she laughed. It was also clear that some of what I said jogged her memory. Finally, we both went back to sleep.

I thought that both of us might sleep a little later this morning, but it didn’t happen. I was up at 5:50. That wasn’t much of a surprise. The surprise was that Kate got up early enough to be ready for Panera about 8:00. She is doing fine. I am sure she doesn’t remember her anxiety during the night. That’s the only good thing about her memory loss.

A Very Tender Moment for Both of Us

People who know each other well often find that they understand the thoughts and feelings of the other without the expression of words at all. Last night, Kate and I had what I believe is one of those experiences. We went to our regular pizza place for dinner. We normally go on Friday night, but we went to a more special place that night. It is a much more romantic place than where we have our pizza. The pizza place is something of a dive, a really down home place where they specialize in all the Italian comfort foods – lasagna, spaghetti and meatballs, baked zita, etc. There is nothing romantic about it, but that is where we had a very touching moment.

We took a seat in a booth on the side of the dining room near the back. At first, Kate was quiet, not saying a word. Then with a touch of sadness she reached her hand across the table to me. I took her hand in mine, and she said, “Thank you.” I said, “For what?” She answered, “For taking such good care of me. You’re a good man.” At that moment, tears welled up in her eyes and in mine. I said, “We’re both getting sentimental, aren’t we?” She nodded. We didn’t say another word. We were silent for a few minutes. Then we went ahead as though that moment hadn’t happened.

I can’t be sure of exactly what was going through her mind, but here is what I think. She thanks me frequently, but last night was different. I believe she recognizes the fact that her memory is getting weaker and that it’s not going to get better, only worse. I don’t believe she remembers that she has Alzheimer’s or even remembers what that is. She only knows she is not functioning the way she should. I believe she knows our lives will not be the same again. Even if that is not precisely what she intended, I interpret her words as a way of saying goodbye.

Will I ever know what she was really communicating? Probably not, but it made me think of an experience our TCU friends Nancy and Charlie Hardwick had a few weeks before he died. He had shown signs of dementia a year or two before Kate. He looked up from his bed into Nancy’s eyes and said, “You know I’m dying, don’t you?” She did know, but she was surprised at his clarity in recognizing it himself.

I doubt that Kate goes so far as to see her present condition as a step in the dying process, but I believe she is coming to the conclusion that she won’t get better and is grateful that I am committed to caring for her whatever lies ahead. What makes me believe this? There are several things.

First, is that she has previously conveyed her awareness of her memory loss. Though it doesn’t happen often, she even says things like, “I don’t know what’s wrong with me?”  Second, she not only recognizes that she has a problem, she works hard every day to remember my name, the names of our children and grandchildren, what city we live in, the names of the restaurants we visit. She tries, often unsuccessfully, to repeat them as if she were trying to imprint them in her brain. She obviously cares. Third, although not all the time, she is bothered by her memory problem. Her two or three anxiety attacks have been ample evidence for me. Fourth, she frequently demonstrates an ability to correctly read what is happening around her. She understands matters of life and death and suffering. She is very responsive to news reports. While she can’t grasp the explanations of news, she frequently exhibits the appropriate emotional responses to them.

Finally, the emotional way in which she expressed her appreciation last night communicates that her sense of what is happening is far deeper than a casual instance of having a problem with one of her jigsaw puzzles and my helping her solve it. She knows she has a serious problem.

It wasn’t very long ago that I thought she would simply drift away without suffering any anguish over her illness. That is clearly not true. Now I am asking “How long will this last?” I really don’t want to see her enter the next stage, but I don’t like seeing her suffer.

A Very Sad Moment

I just went into our bedroom to wake up Kate. She opened her eyes right away. The soft music I turned on about fifteen minutes before must have worked. I sat down on the side of the bed and told her good morning. She looked up at me and didn’t say anything. I said, “I love you.” When I did, tears welled up in her eyes. She had a very sad look on her face. As I have noted before, she is not one to cry. She held back her tears but didn’t say anything. Then she said, “What’s your name?” I rubbed her back for a few minutes and then told her I would always be here to take care of her. She said, “That’s good.” I told her I would like to take her to lunch. After a few minutes, I helped her up and showed her the clothes I had picked out for her. Then she went to the shower.

I can’t be sure what brought on the tears or the anxiety last night. Her tears followed my saying that I love her. I wonder if my expression of love and her not knowing my name hit her in some way. It hasn’t done that before. I don’t believe she remembers that she has Alzheimer’s. I know, however, that she recognizes the changes that are taking place. She has expressed that concern before. I believe that is causing her anguish. She knows she is losing touch with the world around her and wants it to stop.

It is ironic that when I was at Rotary on Monday, one of the members asked me how Kate was doing. I told her. Then she said, “At least she is not aware.” I quickly said, “Oh, no. She does know, not that it is Alzheimer’s, but she knows she is losing her memory.” I must admit that I thought by this time she would just drift away without realizing she has a problem. That’s another of my expectations that was wrong.

As I have mentioned many times, the most difficult part of this journey is the sadness I  experience at moments like this. It is very painful knowing that she is troubled. I don’t look forward to the next part of this journey when she won’t have the same recogition, but I hate to see her suffer now.

The sitter is coming this afternoon. I have a meeting at 1:15, a dental appointment at 2:00, and another meeting at 3:15. It’s going to be harder than usual for me to leave her. I think I will set up the DVD of Les Miserables so that Mary can play it for her while I am gone.