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Confused But at Ease

Yesterday I decided to let Kate sleep a little later than the past few days. I checked on her at 11:00 and found that her eyes were open. I asked if she would like to get up. She asked me to give her a little more time. I went back in twenty minutes. She was awake. I told her it was getting close to the time we should leave for lunch and thought she should get up if she could. She indicated she was hungry.

I said something about her having slept later than she had during the time Virginia and Ken were visiting. She said, “Who?” I told her again. She didn’t recognize who I was talking about. I said, “Ken is your brother.” There was no sign of recognition. She said, “What’s his name?” I repeated his name. She usually says she likes the name “Franklin.” This time it meant nothing to her. She did ask where he got his name. I told her from his mother and father and that they were also her parents. She wanted know their names. I told her. She wanted me to repeat their full names. She asked me to do it again. She wanted me to say each name (first, middle, and last) slowly so that she could repeat each one. When I had done this, she wanted to know my name. I told her and told her I am her husband. She was surprised. I told her a little bit about our courtship and then our marriage in her home church. She was still puzzled but accepted what I had said.

Two things struck me about this experience. The first is that it’s one more time that it took her a while to acknowledge that we are married. It’s getting harder for her to remember that. The second is that she continues to trust me as someone she knows. She shows no sign of fear. She seems perfectly comfortable with me. I am grateful for that.

All of this must have taken fifteen minutes. She finally got up a little after noon. She took a shower and then got back in the bed. I got her up just after 1:00. It was 1:45 when we left for lunch. Just before leaving, she walked out of the bathroom with a tube of toothpaste and a toothbrush in her hand and asked, “Are we going to stay another night?” I told her we were. Then I took them back to the bathroom.

The rest of the day went quite well. I saw no indication that she forgot that I am her husband although she did ask my name a number of times. At lunch she said something affectionate and immediately asked my name. Then she laughed in recognition of how strange it sounded to pair those two things. Twice she mentioned that she remembered coming to the restaurant with her mother although her mother had never been there.

There is one other thing I haven’t commented on before. The restaurant where we eat each Sunday has several prominent photos of Frank Sinatra, and much of their music features him. One of the photos was taken when he was arrested for seduction and adultery in 1938. Kate asked me about the photo the first time she saw it. I explained and also said something about his mob connections. I didn’t think much of it, but every Sunday she asks me who he is multiple times. When I say his name, she always responds negatively. Today, for example, she said, “He’s a rat.” Then she said, “I don’t know why I feel that way.” It’s another good example of how well she can hold on to feelings while she so easily forgets names and other facts associated with them.

I was about to finish this post when I recalled one other example of the power of feelings. Last night I played several YouTube videos of Christmas music when I suggested it was time to get ready for bed. She got up from her chair to walk to the bathroom. As she did, she commented on the beautiful music and how special it was that we could share it together. Then she asked my name. A few minutes later she called me by name. She hasn’t completely forgotten it yet.

When she came out of the bathroom, she said, “I’m glad we came here.” A few minutes later she asked where we are and how I found “this place.” I told her I couldn’t remember. She thanked me for bringing her here.

As I was helping her get into her night clothes, she said, “I wonder what my mother would think of this. <pause> I think she would approve.” Then she thanked me and said, “I don’t know what I would do without you. I mean it. I really don’t know how I could do it.”

All of these things are signs that she is still able to feel, enjoy, and appreciate things. I am grateful. We have made the most of that ability in the past and will continue to do so even as the names and recognition of people and places recedes from her memory.

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A Good Last Day with the Franklins

Late yesterday afternoon, Virginia and Ken caught a flight back to Texas. It was a very good visit for us, and, I believe, for them. I really hated to see them go. Given Ken’s own Alzheimer’s diagnosis, one might expect them to be understanding of our situation, and they are. They are also very thoughtful guests and were long before Alzheimer’s entered both of our worlds. They are the only people I know who can visit and make you feel like you are the guest. That’s a good thing; they make you feel special.

For me, the highlight of the visit was the first afternoon when Kate and Ken spent over three hours together going through family photo books. Even though Virginia and I were in the kitchen the whole time, it was special for us to know they were having such a special moment together.

Each day Kate slept late and would have slept later if I hadn’t gotten her up. Yesterday she was especially tired, but she got up without a fuss. I hated to wake her, I felt like the time with the Franklins was too precious to let her sleep too long.

I’ve reported on two recent social situations in which Kate’s conversation has been unusually bold as though she were working to get attention. She had one of those experiences yesterday before going to lunch. I think she was trying to be humorous, but it wasn’t working. It was totally unlike her. It continued for a time at lunch, but she soon settled down.

Kate and Ken have a cousin whose husband had Alzheimer’s. I know that she used to carry small cards that she gave to people letting them know of her husband’s diagnosis and asking for their understanding. I’ve kept that tucked away in the back of my mind for a  long time but haven’t felt a need for them. These recent experiences have led me to believe otherwise.

After returning from lunch, we had another hour to relax before the Franklins left for the airport. I have to admit to more than a bit of sadness as their departure approached. I can’t predict if and when the four of us might be together again. As I have said in other posts, I know it is unlikely that we will make another trip to Texas. I also know that Kate will not be the same if they are able to visit us again. In that sense, this visit was another of those “last moments” that become treasured memories.

There were a number of things that made our time together special. The obvious one is the sibling relationship between Kate and Ken. It is also the longevity of our relationship as couples. We have lived apart all that time, but we have visited in one another’s homes many times. We have shared responsibilities of parent care. Now there is something else that unites us. We are all living with Alzheimer’s. Throughout their visit, I could sense that connection. Ken and Virginia were very understanding about things like getting started in the morning and my having to step aside to help Kate get ready. It was a little like having a support group at our house for the entire visit. I’ll miss that.

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Another Early Morning Experience

Yesterday it was 5:00. Today it was 4:00. The experience was similar but not exactly the same. Yesterday she seemed afraid of something that happened in a dream. This morning I felt a wet spot in the bed and asked her if she wanted to go to the bathroom. She said she did. I walked around to her side of the bed and asked if she would like me to help her to the bathroom. She said yes. I helped her sit up on the side of the bed. She said, “Thank you. Who are you?” I said, “I am Richard Creighton, and I am your husband.” She didn’t act surprised or in disbelief as she sometimes does. She held my hand all the way to the bathroom. On the way, she asked my name again. I told her I would get her a fresh gown and underwear.

This was a time I had to make a quick decision. Do I take off the sheets and put on clean ones or do I put something over the wet spot? I decided to do the minimum and focus on getting back to sleep. I got two towels to put over the wet spot. Kate brought another one from the bathroom that I placed over the others.

When we got back in bed, Kate thanked me several times. I said, “I like to help you. I will always be here for you. I want you to count on that.” She thanked me again and said, “What’s your name?” She said, “Oh, I knew that.” That started a conversation that must have lasted thirty minutes. It was very much the same as the previous night. After asking my name, she wanted to know her own name. Then it was her mother’s name. That led to her asking the names of her father and children. After my telling her each name, she asked me to tell her again.

Like the previous night, she never sounded anxious. She was very natural in asking and receiving what I told her. As on other occasions, she responded with good feelings about her mother and her family. She was especially pleased when I told her that our oldest grandson, Brian, is in his second year at TCU and that his sister, Heather, would be a freshman at TCU next fall. I told her that her father was one of eight children. She asked me to tell her their names.

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Another Good Day

Kate didn’t want to get up yesterday. I suspect that may have been a result of our having gotten to bed a little later the night before and our early morning experience when she lost another hour’s sleep. Not only that, I feel sure it was taxing for her to be in a lengthy social situation during most of the day and that evening. Ken and Virginia went to Panera early and then came over to the house while I was trying to get Kate ready. Their being here helped me explain why I wanted her to get up. She didn’t protest at all. She was simply tired.

We went to lunch at one of Ken’s favorite places from his past visits. We ended lunch with a special dessert, hot fudge sundae over a brownie in a large goblet. Kate and I have watched it served during the forty years we have eaten there. We’ve always said that one day we would have to try it. It was Ken’s birthday. That seemed like the time, and it was.

Once back at the house, Kate lay down to rest in our bedroom. I think she rested a full two hours before I got her up. She and Ken looked over more of the photo books and then we were off to dinner. We had another good meal, conversation, and, of course, a high-calorie dessert. It was another good way to celebrate Ken’s 75th birthday.

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Our Early Morning Experience

Early this morning I heard Kate whimpering. I asked what was bothering her. Our conversation went something like this and was repeated several times.

KATE:            “Where am I?”

RICHARD:    “You’re in our bed in our very own house in Knoxville.”

KATE:            “Thank God. <pause> Who are you?”

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

KATE:            (as if talking to herself) “That’s right. Where am I?”

RICHARD:    “You’re in your bed at home.”

KATE:            “What’s your name?”

RICHARD:    “Richard Creighton.”

KATE:            “I’m glad you’re with me. I feel safe when you’re with me.”

From this point she wanted to know the names of her mother and father, if we have children, and their names. Then she wanted to go to the bathroom and asked where it is. I asked if she wanted me to help her there. She did. I helped her up and walked her to the bathroom. As we walked, she said, “Are we in the hospital?” I said, “No, we’re at home. You’re going to be all right. I’ll make sure of that.” She said, “I’m glad you’re here. I feel safe with you.”

After she finished in the bathroom, I helped her back to bed. That began a repeat of the conversation above. She wanted to know where she was, who I was, and to hear about our children and grandchildren. She began to relax, and we both fell asleep.

I need to say that this experience was not exactly like the anxiety attacks she has had before. This one seemed more like a response to a bad dream. She began to feel relieved right away when I told her where she was and who I am. The anxiety attacks were more enduring. Her concern then was her state of mind. This time she seemed afraid of something that was happening to her. The fact that she asked if she were in a hospital and that she felt relief when I told her she was in her own home makes be think it had to have been a dream. This hasn’t happened often, but it has occurred several times over the past few years.

It is almost 9:30 right now, and she is still sleeping. I’ll probably see about waking her soon. If today is half as good as yesterday, it will be a terrific day.

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A Great Day with the Franklins

I love being able to report good news, and that’s what I have in this report. Yesterday was our first full day with Ken and Virginia. Kate did not sleep as late as she has been. That enabled us to meet them at Panera for Kate’s muffin, morning beverages, and good conversation. From there we went to lunch at Carla’s. We are taking them to some of our regular places to give them an idea of our daily routine for the past few years.

If the day had ended right after lunch, I would have said we had a really good day, but the best was yet to come. Virginia and I were both hoping that Kate and Ken would have an opportunity to enjoy their time together apart from the four of us. I wasn’t quite sure how we might orchestrate that, but that turned out not to be a problem. After we returned home, they sat down on the sofa in the family room and started looking at some of the family photo books. Virginia and I made an exit to the kitchen. The two of them reviewed family photos and talked for at least three hours. I don’t recall another time that Kate has engaged in conversation with anyone else for that length of time.

I only wish I could have listened in on what they were saying. I do know one thing. More than two hours after they had been talking, Virginia heard Kate say, “What’s your name?” After Ken answered, she said, “And you’re my brother?” Later I mentioned that to Ken. He said she asked his name several times as they were talking. He said she asked very naturally. I was so glad he had that experience. That is exactly the experience I have with her.

Before we left for dinner. I asked if she would like to use the bathroom before we left. She said, “Yes, where is it?” I told her I would show her. She met the three of us in the kitchen a few minutes later. She walked in as though she had never been there before and said, “This is a nice kitchen.”

We topped off our day with dinner at Casa Bella. It was the last night for their program of music from Les Miserables. All of us enjoyed the music and food. It was a great evening and a suiting end to a very good day.

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From Clarity to Excitement to Insecurity to Enjoyment to Confusion

All of us experience moments when we are up and when we are down. Kate sometimes changes quickly from one emotion to another. She hasn’t always been like that. Alzheimer’s is the culprit. Yesterday she went through a series of emotions from the time she awoke until we had gone to bed.

When I went I to wake her, her eyes were open. She was very relaxed. She was enjoying the comfort of a warm bed on a cold morning. As I approached her, she smiled warmly. There was no sign of confusion about who I was. I told her good morning and that I love her. She smiled again and motioned with her hands that she felt the same way about me.

We didn’t have any obligations that required her to get up at that time, but I thought it would be good for her to get up for lunch and take care of a few things before Ken and Virginia arrived later in the afternoon. Often she is resistant to getting up, so I approached this cautiously. I found that for the second day in a row she was very cooperative. We were off to a good start.

Apart from her usual problem with names, Kate seemed quite normal and completely at ease. We had lunch and came back home and relaxed a while. Later we went to Barnes & Noble. Shortly after we arrived, I received a call from Sue Glenn, a childhood friend of Kate’s in Fort Worth. She was calling to check on Kate. It was just over a year ago that we had visited with her and several other high school friends when we were in Fort Worth. We hadn’t spoken with her since a phone call conversation a few weeks after that. I always wonder how Kate will handle phone calls from people she has not seen or talked with in a long time. I was very pleasantly surprised that the call could not have gone better. I told Kate who was calling and handed her the phone. Her eyes lit up immediately. There was a clear sign of recognition. She and Sue chatted almost ten minutes. Kate couldn’t say much with a lot of specifics, but she was able to convey her feelings about her past experiences. I think I derived as much pleasure listening to Kate’s side of the conversation as she enjoyed talking with Sue. I don’t often see such excitement or recognition these days.

We went back home to await a call from Virginia and Ken. After their call, I told Kate they would be coming to the house and then we would go to dinner. Coming off the phone call with Sue, I expected Kate to show a similar reaction. Instead, she felt a little uneasy. She said she was tired and didn’t feel like being with anyone. She didn’t say much more. I thought (and still think) she felt the need to be a gracious hostess and wouldn’t be able to carry it off. I assured her she always did well in social situations and would be just fine. She said, “You promise?” I said, “I promise.”

I am happy to say that I was right. She was herself, and we all had a good time. We chatted a short time before going to dinner. The dinner also went well. Ken and Virginia got a sense of why we like eating out so much. We encountered a couple of people we hadn’t seen in a good while. That added another nice touch to the evening.

Ken and Virginia went back to their hotel after dinner. When we came in the house, Kate was confused about where she should go. She wanted to go to the bathroom and asked where it is. I took her to the one she uses most. It wasn’t long before I heard a loud “Hey.” She didn’t hear me answer and asked, “Hey, where are you?” I said, “I’m in our bedroom.” She said, “Where is that?” By that time, I had walked to her. She was standing in a hallway around the corner from our bedroom. She didn’t know where to go. As I walked her to the bedroom, we passed the open door of the guest bathroom. She looked in and saw the bathroom door to the bedroom was also open. She said, “What’s that?” I told her. She said, “Oh.” Nothing seemed familiar to her.

Her confusion continued after we were in bed. She had forgotten that we are married. This was the second night in a row we have had this experience. Our conversation sounded like a couple that is dating. I said, “I love you.” She laughed and said, “We’ll see.” I said, “Well, don’t you love me?” She said, “Maybe. We’ll see.” I said, “Maybe we should make this a long-term relationship.” She said, “Let’s not talk about this right now.” It wasn’t long before she touched me. Then she touched her lips and blew me a kiss. Shortly after that she put her arm around me and we went to sleep.

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Signs of Christmas

It’s beginning to look and feel a lot like Christmas. Our neighbors across the street started their decorating the week after Thanksgiving. When we returned from Texas, we noticed that the neighbors next door and one other put theirs up while we were gone. The past couple of years I haven’t done anything except to join all the neighbors in putting up a tree near the street in the front yard. All of us do that every year.

This could very well be the last Christmas that Kate and I will celebrate in a typical way. I felt like we should do more than in the past few years. I discovered that the wife of the man who has been helping to clean up the dead shrubs around the house is a former florist and decorator. I engaged her to put up greenery with red bows outside in each of the front windows. She also put garlands with white lights down the railings on either side of the front porch. I showed her some of the other decorations that Kate has used in the past. She use those along with a few new things and decorated our family room and the bay window in the kitchen. It is not elaborate but attractive. Kate was happy with what she had done. So was I.

Our church sponsored a Christmas luncheon for seniors that we attended yesterday. We were supposed to be at church at 11:15 to catch a bus to the restaurant where it was held. That made me a little nervous since it can easily be 11:30 or noon before Kate can get ready. Fortunately, that was not a problem. I woke her around 9:30. She got up easily, and we were there in plenty of time. I was happy about that because we have been very irregular in our church attendance for at least a year. I believe it is good for both of us to maintain our ties. This luncheon was a good opportunity with a group of people we have known for a long time.

Kate handled herself well as usual. After we arrived, I left Kate with a couple of friends while I went to a table to make name tags for us. I was gone only a short time when I noticed that she was looking around the room. I knew she was looking for me. I walked over to her. She said, “I didn’t know where you were.” The only thing I know that she couldn’t handle was how to answer a woman’s question as to where she lives. She turned to me and asked me to tell her. This was a woman we don’t know well and probably doesn’t know about Kate’s Alzheimer’s. She must have thought it strange. We had a brief conversation with another woman Kate didn’t remember. The woman said she had trouble with names herself. Then Kate proceeded to tell her she has the same problem. She went on to describe how she turns to me, points to someone she should remember, and asks me the person’s name.

We came back home after lunch. Kate rested for about almost an hour before we left to get our hair cut. They cut Kate’s hair first and then mine. Kate worked on her iPad while I was getting my hair cut. When I was through and ready to leave, she was in the middle of a puzzle and wanted to finish. I sat down with my iPad and did a little reading. The next thing I knew thirty minutes had passed. I asked if she were ready to leave. She said she wasn’t. She had gotten comfortable and was enjoying herself in much the same way she does at Panera or Barnes & Noble. I waited a few more minutes and then told her I thought it was time to go.

From there, we went to Target where I was looking for a hanger for the wreath for our front door. They didn’t have what I needed, but Kate walked very patiently through the store with me and back to the car.

It was getting close to dinner time, so we went to eat before going back home. We had a nice dinner. Then we returned home and relaxed until 9:00 when we started getting ready for bed.

Kate’s brother and his wife arrive from Texas this afternoon. As we left the restaurant last night, I reminded her of that. As I expected, she hadn’t remembered and asked their names. We went through them a couple of times. Then she asked when they were coming. When I told her this afternoon, she asked, “Where are they staying?” I told her they were staying in a hotel near us. She had a look of relief as she realized she didn’t have to do anything to get the house ready. I was pleased to see that. It is one of the few signs I have seen suggesting that she might feel some responsibility for taking care of things like that. Something similar happened yesterday afternoon. We drove up to our house, and I said, “Look at all the leaves, and (the person who cuts the grass) was just here last week.” Kate said, “I guess I’ll have to get out and rake them.” She has done a little raking in the past but never often. I was surprised that she assumed it would be her responsibility.

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An Unusual Experience

Kate and I went to Panera after the sitter left yesterday. As always, she worked puzzles on her iPad while I worked on my laptop. About 5:30, I asked if she might be ready for dinner. She held her hand up as if to say, “Wait a minute.” She was working intensely on her iPad. She looked very serious as though she had run into a problem. I couldn’t see the screen but had to assume she was working a puzzle. That is all she does on it unless she accidentally opens another app. When that happens, she asks for my help getting back to her puzzles. This doesn’t involve the same seriousness I was witnessing.

I let her continue without interfering. About ten minutes passed. She was still engrossed with her iPad. I offered to help her. Once again she held up her hand to stop me. She finally closed her iPad, something she does when she gives up on solving a problem she encounters. She was disturbed. Tears were beginning to form in her eyes although she didn’t cry. I asked her to tell me what was bothering her. She tried to speak, but she couldn’t say anything that I could understand. At first, I thought she might be worried about her inability to work her puzzles. I did finally grasp that she was trying to tell me about something horrible that she had read.

Yesterday’s speaker at Rotary was the daughter of Holocaust survivors. I had told Kate what an emotional experience it had been for the entire club. I began to suspect that she had been thinking about the Holocaust. When I asked if that was what was bothering her, she said it was. She didn’t mean my telling her about the speaker. I am sure she didn’t remember I had done that, but somewhere in her brain the memory of the Holocaust had disturbed her. This is one of those events that will always be a bit of a mystery. Here is the only explanation that I can offer, and it sounds strange.

Kate is an emotionally sensitive person. That has been especially so since Alzheimer’s came into her life. As a school librarian, she became quite familiar with the Holocaust. Many students worked on research projects on the topic. Kate read a lot on the subject and has always taken an interest in WWII movies that deal with it. Perhaps my telling her about our speaker sparked her latent memories. That itself is not hard to imagine. The question is, “What kind of experience did she have for ten to fifteen minutes?” It looked like she was working on a puzzle, but she was too intent and emotionally involved for that. She conveyed that she had been looking at something about the Holocaust on her iPad. I don’t believe that could have occurred. She wouldn’t have known how to locate that kind of information. My only thought is that she was having an hallucinatory experience. She has had them before, but they were different. They have always involved her telling me about something that someone has said or done that I know didn’t occur. This time I was watching her as she was having an hallucination, BUT I’ll never know if that is really what happened.

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A Good Experience with a Sitter

Next week it will have been a year and three months since I first engaged the services of an agency that provides in-home care. I arranged for a sitter to come for four hours three days a week, Monday, Wednesday, and Friday. Things have gone pretty well for the most part. The first couple of weeks we had a couple of sitters that didn’t work out. Since that time we have had the same sitter on Monday and the same one on Wednesday and Friday until recently when our Monday sitter had her own health problem. We had someone who took her place for two or three weeks before she also had health issues and won’t be back.

The agency sent a new person today. She is to serve on an interim basis until they can locate someone to be with us regularly. I didn’t get word about this until just before leaving for Thanksgiving, so I was a little uneasy about having someone new without my having met her previously. I suggested that they send her an hour early so that Kate and I could get to know her a little before I left for Rotary. I was prepared to skip Rotary if I felt at all uncomfortable.

My next concern involved getting Kate up in time for me to help her dress before the sitter arrived. She had gotten to sleep late last night. That made me think she would sleep late this morning. I was pleasantly surprised when I discovered she got up early. She was still getting ready when the sitter arrived. That gave me time to give her a brief orientation to Kate and her needs and routine. When she walked into the family room, Kate reached out to give her a hug before I could introduce two of them. Kate and I liked her very much.

Since it was time for Kate’s lunch, I suggested that the three of us go over to Panera. We went in two cars so that I could go directly to Rotary from there. I ordered Kate’s lunch while the two of them took a seat. When I got to the table, the sitter told me she liked the name Jesse. I was surprised that Kate had remembered our daughter’s name. That doesn’t happen often. I left for Rotary, and they were talking just like they had been longtime friends.

I called the agency from the car letting them know that I was pleased. I told them I would like to have her on a regular basis if that were possible. They are going to let me if if they can work that out. I certainly hope so.