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Enjoying Columbus Day With Our Son

As I mentioned in my previous post, Kate was ready for Panera unusually early yesterday. That gave us more time to spend with Kevin. We were back home shortly after 10:00. That worked well. I put in a DVD of Kate’s father’s family movies from the mid-1930s through the early 1940s. Kevin hadn’t seen most of the footage before, and Kate loved seeing them once again. She particularly liked seeing movies of her mother and father when they were so young. She also took delight in seeing herself shortly her birth up to about age 4 or 5.

After the movies, Kevin and Kate took me to my Rotary meeting, and the two of them had a nice lunch together. This is something they do on each of his visits. I think it is great for them to have that time together.

Following lunch, we went to see the documentary, Love, Gilda. Over the past year, I have had less and less luck finding a movie that Kate enjoys. This one wasn’t a winner for her. She didn’t find anything that engaged her. Her eyes were closed a good bit of the movie. I’m not sure if she was asleep, but I know she wasn’t paying attention.

We came back to the house where she rested about 45 minutes before going to dinner. We had a very good meal and shared two large desserts. It was a good way to top off the day.

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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.

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Our son is observing more signs of Kate’s Alzheimer’s.

It was sometime after Kate’s diagnosis that I learned what it meant to “lose one’s filter.” My own interpretation would be that people, especially those with dementia, fail to consider their audience when expressing themselves and can easily say things that might not otherwise say. I can’t say that this has been a special problem for Kate, but she is definitely more likely to express her honest thoughts now than before Alzheimer’s.

During Kevin’s visit, I have seen new evidence of not filtering what she says. Up until now, it has only been with me that she has expressed her memory problems. Yesterday she did the same in his presence. Twice she asked my name. She also asked, “Where are we?” In the afternoon, we attended a stage production of West Side Story. Before the show, she asked me someone’s name. She immediately forgot it and then asked again. This is the kind of thing about which she once would have been careful not to do in front of someone else.

During the morning, there were other signs of her Alzheimer’s. I had asked Kevin to lock his bathroom door because Kate often uses that one rather than our own. I made sure that he had clean towels and that the bathroom was in order. I had everything ready for Kate to shower in our bathroom. Kevin had breakfast and went back to take a shower. He came back to the kitchen in a few minutes and said that Kate was showering in his bathroom. We waited for her to finish. Then I went to check on the bathroom. I found that she had used both his bath and hand towels plus at least two other towels she had thrown on the floor. I was surprised because she was up so early and that she had had to enter the bathroom from Kevin’s bedroom because he had locked the bathroom door as I had suggested.

At church they served communion by intinction. For those who may be from another tradition, members of the congregation form a line and go to one of several stations where one person holds the bread and another a cup of the wine. I knew Kate would not remember what she should do and asked her to watch me. It was a little too much for her to absorb. I had to coach her quietly, and it worked out fine. It just took us longer than everyone else. I am sure the people behind us wondered about her. I am also sure that some of those are aware of her Alzheimer’s and recognized the problem. That was one of the few times she has done something in public that might cause people to suspect. That is remarkable given how long it has been since her diagnosis. She continues to get along well in public situations. That is a major factor in our ability to continue so much social activity, another thing for which I am grateful.

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More Happy Times

I like good news, and that’s my report today. In my post yesterday, I noted that Kate was in a good mood and had accepted having the sitter without any reservation at all. When I left them, they were beginning to watch Fiddler on the Roof. When I got home, Mary was in the family room watching TV. Kate was in the bedroom resting. Mary said Kate had watched Fiddler for a while and then got sleepy. She got in bed and went to sleep.

When I went to the bedroom to see Kate, she wasn’t asleep but still resting. She was very relaxed but cheerful. This was Mary’s first time to see Fiddler and loved it. I explained that to Kate. I also said that it was nice that she (Kate) could share this experience with Mary. Kate, then, felt she had done something nice for Mary. I mentioned that she might share other musicals with her in the future. Kate liked the idea. I know that she won’t remember that, but I also know that she would feel good if she is able to introduce Mary to something she hasn’t known before.

Last night I asked if she would like to watch Fiddler. Yes, that’s the same show she had watched with Mary. She was excited about that. She was engaged right at the beginning. At 9:30, I suggested that we stop and watch more another night. She said she was getting sleepy but wanted to watch more. We continued for another 45 minutes before I said, “I think I’ll stop it here, and we can watch the rest another time.” She said that was fine, and we were off to bed.

I thought that was the end of the day, but Kate was wound up. We had quite a conversation. I can’t remember all that she said, but I was impressed with her expression of feelings about life and the two of us. She talked about how well-matched we are. Once again, I was struck by the accuracy of the things she said about our respective personalities. That reminds me of something that happened this morning. We stopped by Panera to get a muffin for Kate to eat in the car as we went to the airport to pick up our son, Kevin, who is visiting us for a few days. When I mentioned that she could eat the muffin in the car, she gave me a look of amazement and said, “What’s gotten into you?” The reason I mention this is that I have always been particular about not eating in the car. This time I felt we didn’t have enough time for her to eat it inside. I also knew that she wanted something to eat before we would be able to eat lunch. She may not always remember my name, but she knows me well.

Kevin arrived shortly after 11:30. We had a nice lunch and have been back at the house watching a little football. Kate has continued to be very cheerful. She has teased me a good bit today. I told Kevin that at times she seemed like a child trying to show off with company. He is also getting to see a few of the things that I have told him about. For example, she asked me to tell her where the “restroom” is. I walked her there. As she walked into the hallway, she said, “This looks familiar.” She saw a picture of her mother on the wall and stopped to look at it. She remembered it was her mother, but she had to ask me her name. When she came to a doorway that opens into family room, she said, “Oh, I like this room.” It was just like she had never seen it before.

We are meeting a high school friend of Kevin’s and her mother for dinner. We’re having happy times.

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Good News for Me

If you have been following my recent posts concerning Kate’s acceptance of a sitter, you know of my concerns. In a nutshell, as she becomes more dependent on me, it appears that she has also felt less secure when I leave her. I am glad to report that her response today was very different. I should add that she got up in a cheerful mood this morning. I hoped that was a good sign, and it was.

Usually, I don’t say anything about a sitter’s coming until shortly before she arrives. Today, I decided to give Kate a little preparation. While we were at lunch, I told her this was one of my days to go to the Y and that Mary would be with her while I was gone. I mentioned that they could stay at the house or go to Panera. She seemed to like the idea of Panera which is typical. Then she asked what she should do for money. It is interesting how often she asks this since she has never had to pay at all. I told her that I had a card that Mary could use. She accepted the news without any further questions.

When the Mary arrived, I told them they could watch a DVD of one of our musicals and mentioned Fiddler on the Roof and Les Miserables or one of the others. They liked the idea and were both very agreeable regarding which one. Mary had never seen Fiddler, so I chose it. I explained that it is almost 3 hours in length and that they might want to take a break at some point. I also pointed out to Kate that she could go to Panera any time she wanted. As I left, the movie was playing, and Kate seemed happy. I left with a good feeling. Now, I’m eager to see how they got along during my absence. Since they got off to a good start, I suspect it is going well.

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More Good Times

It’s 10:15, and were sitting here at Panera. Kate was up early enough for us to get here by 9:30. Of course, that makes me happy because today is another day for the sitter. I want to spend as much time with her as I can. To top it off, Kate is in a very cheerful mood. That certainly gives me a boost. It continues to amaze me how much that offsets the sadness that I might otherwise feel when I see all the changes that accompany this stage of her Alzheimer’s.

Some of those changes make caring for her easier than in the past. In particular, I am thinking about managing her clothing. She is much more compliant than in the past. That relates to her increasing dependence on me. For example, we got home from Panera around 5:00 yesterday afternoon. I planned for us to leave the house for dinner at Casa Bella at 5:30. The attire for their music nights is informal, but I felt that both of us should change into something a little nicer than what we had been wearing all day. Past experience led me to be concerned about suggesting that she change clothes. That was especially true last night. I wanted her to change her top, pants, and shoes. I approached this carefully saying, “We have a little time before we leave for dinner. I thought it might be nice if we changed clothes.” She said, “Okay” without any concern or question. I had already picked out what I wanted her to wear and brought it to her. She changed clothes without a problem. She looked terrific. The top I had picked out was one I had bought several months ago. I had tried to get her to wear it previously, but she thought it was too dressy.

Our dinner and the music was terrific last night. Kate enjoyed herself although she is talking less and less in situations like this. We were seated at a table for 8. When the singers were not on, the conversation was lively. I didn’t see any sign that Kate was bothered by this. I think the music made the difference. If we had been at dinner for 2 ½ hours without it, she would have been very bored. I wouldn’t have blamed her. I would feel very alone if I were in a group of people I didn’t know and couldn’t remember anything to talk about.

This makes me think of my mom who had dementia. My dad took her with him almost everywhere long after she engaged in conversation. I didn’t really think about it then. I know much more now that I wish I had known then. I do believe we treated her the right way. We expressed our love for her, and we considered her a part of all gatherings up to the time of her death. Today is their anniversary. Sixteen years ago, we celebrated their 70th anniversary at our home. She died less than a month later.

I also think of my dad. I have done that frequently as I have learned to care for Kate. He was quite a model of a husband who devoted himself to caring for his wife. He did it with very little help. He took her to day care every Wednesday morning while he attended Kiwanis and ran errands. The only other help was from me. That was primarily remaining in almost daily contact and providing evening meals. Otherwise, he was on his own. I should add that it was his own choice. My brother, Larry, and I tried to bring in help or get him to move to assisted living. He fought it and won.

Now Kate and I are traveling the same road. I think we are also handling the situation well. I am comforted by the belief that we will continue to enjoy the days ahead even as life changes for us. Already I am beginning to adapt to Kate’s not knowing her way around the house. It was somewhat shocking when I noticed the first signs. Now, it is becoming routine. When we got home last night, she very naturally asked me where the bathroom is. Just as naturally, I took her.

Before leaving the house this morning, I went to our bathroom to brush my teeth. When I returned, I couldn’t find her. I called her name, and heard her respond but didn’t immediately locate her. I followed the sound of her voice and found her in the living room. She was waiting for me. That is unusual. Like many people these days, we almost never use our living room and keep the doors to the front of the house closed most of the time. She obviously didn’t know where to go and wandered there waiting for me to find her. That is a change from her usual behavior. Normally, she goes to the car and waits for me there.

Her loss of memory for the rooms in the house is sad, but as I said before, her cheerfulness and the good times we have more than balance the sad times.

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Reaction to My Leaving Her with the Sitter

Sometimes there are dramatic moments that one can recall as a point when life changed. The moment Kate’s doctor delivered the news of her diagnosis was one of those. It was mid-day on January 21, 2011, exactly one week after Kate’s 70th birthday. That was a clear marker in our lives. Most other changes are less defined. They just creep up on you. That has been the pattern for Kate and me the past 7 years and 8 months.

Although our changes have been very gradual, I frequently wonder if we are entering a new phase when I notice any difference in Kate’s normal pattern. The changes in her sleeping late in the spring made me think that a signal of an important change. Of course, I couldn’t be sure at the time. Looking back, it appears I was right. Since then, Kate’s changes in memory and confusion have increased more significantly than at any other time since her diagnosis.

One of those changes has been her behavior in connection with the sitters. For months, she happily greeted them. That made me feel good as I left her. Over the past few months, I’ve noticed less enthusiasm when the sitter arrives. On several occasions, Kate has asked if she could go with me. She seemed disappointed when she couldn’t. Along with that reaction, there have been some occasions when she and the sitter didn’t go to Panera. She is also spending more time resting while the sitter is here.

During this same period of time, she was growing more dependent on me. I have mentioned several times, once in the last day or two, that Kate has told me she likes being with me, that she feels safe with me. She hasn’t said this around the time the sitter has been here, but I have always wondered if there might be a connection. An experience yesterday strengthened that suspicion.

We arrived at Panera for lunch a little later than I had wanted and called the sitter to meet us there rather than at home. A few minutes before Mary arrived, I reminded Kate that I would be going in a few minutes and that Mary would take her home. She gave me a big frown. I said, “Do you feel like I am deserting you?” She said sternly, “Yes, and I don’t like it.” All of a sudden I felt like a parent leaving her young child on the first day of school.

When I got home, Kate was resting on the sofa in the family room with the sitter who was watching TV. I walked the sitter to the car and asked if they had stayed long at Panera. She told me they stayed “a little while.” She said Kate had wanted to go back home where she rested for a while. Then she got up several times and returned to the family room. She worked on the iPad a little but also rested a good bit.

In our conversation, I suggested that if this happens again that she might take her back to Panera. She seemed a little surprised. I told her it is not uncommon for us to go back more than once in a day or to Barnes & Noble. I also told her that Kate gets bored staying at home for long stretches and that we are rarely home for more than 2-3 hours in a day. I will convey this to our other sitter the next time she is here. I am hoping to work with the sitters to address the issue. I feel that is a better direction than reducing the sitters’ time.

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Waking Up This Morning

Kate was sleeping soundly when I woke her this morning. I put on some music, but she continued to sleep, so I went into the room and sat down on the bed beside her. She opened her eyes but didn’t say anything. I asked if she would like me to take her to lunch. She nodded. I sat there a few moments. Then we had the following conversation.

KATE:  “What’s your name?”

RICHARD: “Richard Creighton.”

KATE: “Richard Creighton.” (pause) “Say it again.”

RICHARD:  “Richard Creighton.”

KATE:  “Richard Creighton.” (pause) “Who are you?”

RICHARD: “I’m your husband.”

After another moment or two:

KATE:  “Where am I?”

RICHARD:  “At home in your bed.”

KATE:  “Where’s my home?”

RICHARD:  “Knoxville, Tennessee.”

Shortly after that, she got up and is now taking her shower.

I relate this incident to convey just how much of her memory she has lost in the past few months. There is something else. I am amazed at how well she adapts to having so little memory. Except for several attacks of anxiety mentioned in other posts, I haven’t noticed any display of anguish. That doesn’t mean I haven’t observed anything else that might be a symptom of her concern. Day before yesterday, she was quiet most of the time I was with her (until bedtime when she was talkative). When she has her quiet moments, I wonder what she is thinking. Is she thinking about herself and what she can’t remember? Is she wondering what is the matter with her? I suspect so. She is very perceptive and insightful. I am still surprised when she makes comments about me that are very much on target. She can’t remember my name. Sometimes she doesn’t recall that I am her husband, but she has a good grasp of who I am in terms of personality. She knows my OCD tendencies. She has always been a good observer of her own qualities. That makes me think that she may be suffering more inside than she lets on.

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People Make a Difference

I have often mentioned the importance of our eating out as a way of minimizing the social isolation that is often a side effect of a diagnosis of Alzheimer’s. That and our regular visits to Panera and Barnes & Noble go along way to keep us socially active. The beauty of these social encounters is that they are not lengthy ones that place any special demands on Kate. One might think of them as very superficial and unimportant, but I have found them of significant value. Yesterday, we had three that were especially nice.

The first occurred at Panera. As Kate was getting something from the drink dispenser, I put our things down at the table where we often sit. I was opening Kate’s iPad and the jigsaw puzzle app when I noticed a young woman with her laptop at another table. We exchanged “good morning” greetings. Then she told me that she had seen us a number of other times and was struck by what a loving couple we seemed to be. She had noticed my setting up Kate’s iPad, getting her a muffin, and helping her coming in and out of the restaurant. I thanked her and I told her that Kate and I have been married 55 years and about her Alzheimer’s. I hadn’t remembered seeing her before. It was a short encounter, but I was touched by her words and the way she expressed them. She probably doesn’t think did anything of importance. For me, it was an great way to start our day.

The second experience was having dinner with a couple with whom we have shared a table on several occasions at Casa Bella’s Broadway nights. They called on Monday and asked us to have dinner with them last night. Kate, of course, could not remember them, but I told her she would recognize them. Several times, before meeting them she had me repeat their names and try to remember them. It was impossible. It’s one of those times I try to imagine what it must be like for her, not remembering the names of anyone around her. It turned out to be a good evening. They are very easy to talk with, and Kate was not put on the spot in any way. They had remembered Kate’s drinking iced tea and brought her a box of tea to take home with her. We had a good time. I don’t believe they invited us thinking that they were doing something special for us. It was just a simple invitation for dinner, but it’s just one more uplifting social encounter.

We bumped into someone who stopped us on the way out. She had remembered me from my visits with Dad when he was in a nursing home. Her father sat at the table next to him. We often chatted, especially with her little boy. We talked with her family and her for about ten minutes. It turns out I have another connection to the woman’s husband. I had worked with his mother when her company was a client of mine quite a few years ago now. It’s been five years since I had seen her. She said her father, who was a good bit younger than my dad, is still there. It was another unanticipated encounter that was meaningful to me. Kate had not known the woman, so I know it didn’t mean much to her, but she enjoyed seeing her son. Children always brighten her day.

Once we were home, we watched a little of South Pacific. It was interesting to see that Kate was familiar with all of the music and some of the words. It was another good day and one that illustrates the power of both people and music.

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More on Insecurity

It was just two days ago that Kate got up and was worried because she couldn’t find me. I had been in the kitchen, and she hadn’t done a lot of looking. She was still in the back of the house when I found her. What was important was that I hadn’t seen her react this way before. Although I haven’t walked for three weeks because of a pinched nerve, I decided the days of my morning walk are over. I also wondered how soon it would be before I saw other signs of her insecurity. I didn’t wait long.

This morning I left the door open from the family room into the hallway where our bedroom is located. I have been closing it for years so that I might not disturb her while she was sleeping. I thought leaving the door open would help her find me the next time she is looking.

When I checked on her about 9:00, she was just getting out of the shower. I left her with the clothes I had laid out for her last night. A little after 9:30, she walked into the family room. She was wearing the pants I had put out for her but with her night gown instead of the top I had put out for her. She said, “Oh, there you are. I couldn’t find you.” Unlike the other morning when she seemed a little worried but still calm, she was definitely more concerned and said, “Don’t ever do that to me again.” When I told her I wouldn’t ever leave her, she said, “Promise? Promise?”

When I was assured she was all right, I went to the bedroom to get her top. I gave her it to her, and she asked (using hand signals) if she should take off her gown. I told her she should. Once she had the top on, we were off to Panera.
From there, we went to lunch. As we walked along side the restaurant, I walked ahead of her. That is has been her preference for years. That seems to be the most comfortable way for her to know where she should go, just follow Richard. I was about 8 feet ahead of her when I heard her call my name. I don’t ever recall her doing that before (that is, while following me). I stopped to let her catch up. Then I turned around. When I reached the corner where we would turn toward the entrance, she called again rather sternly. I stopped and waited for her. I was going to do that anyway. I have learned the hard way that she loses me when I turn left or right. I don’t recall exactly what she said, but she almost seemed frightened. I apologized, and told me she needed me to stay with her.

There have been several times over the past few years that I have lost her. Each time was when we were traveling, and each time she was very calm during and after the time she was missing. Now she is expressing a degree of fear of being lost, and not just in “foreign territory” but right here at home. The changes seem to be occurring with greater frequency all the time.