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Very Chatty in the Afternoon

Yesterday afternoon, Kate took a nap and slept almost two hours. I think she was catching up for lost sleep over the past few days. She was definitely wide awake when she got up. We decided to go to Panera. In the car she said something about being very independent. We didn’t get very far before she recanted and said, “Well, you do drive me places, and shop for groceries, and take me out to eat, and take me to far away places.” When she finished her list, she said, “And, I don’t even know your name.” I told her. Then she said, “I knew that. It just wouldn’t come to me.” I said, “That happens sometimes.” I was interested that this occurred without her showing any signs of concern, anxiety, or fear.

When we got out of the car, she asked, “Did you know my mother?” I told her I did. Then she said, “What is her name?” I told her her, and she said, “You got it.” Once inside, I opened my iPad to write another post about a conversation we had had at lunch. Before I wrote anything, she asked me how many children her father’s parents had. When I told her, she wanted to know who they were. I went down the list of the 8 children who had lived. The first died in infancy. She began to reflect on all her aunts and uncles. That began a conversation (with her doing most of the talking) that continued for almost fifty minutes. It was interesting because she really couldn’t remember any specific facts, but she could remember qualities about them, at least how she remembered them. My only part in the conversation was answering her questions and agreeing with her memories.

In the course of our conversation she periodically said, “That goes in the book.” This is a photo book that she started to work on 5-7 years ago. For a couple of years, she edited photos on her computer, but she never got around to assembling them into a book. About three years ago, she stopped using the computer. She never said, but I think it just got too difficult for her. Her intention to create the book never ceased and continues to this day.

This time she talked more earnestly about the book. She noted that she had said she was going to write the book before. Then she said, “This time I’m going to do it.” She paused a moment and added, “And you’re going to help me do it.” I know it will never happen, but I believe it is good for her to have something for which she can aspire.

We finished the day with an evening of jazz at Casa Bella. It was an especially good evening. The vocalist is a member of our church, and we saw several other church members there. Kate didn’t participate much in the conversation at our table, but she enjoyed the music.

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Follow up to Kevin’s Visit

As always, we had a good visit with Kevin. Except for Kate’s minor anxiety attack the other night, she enjoyed herself. She did feel tired, but that was probably related to getting up so early two of the days he was here. On a few occasions, she was more animated than normal. That was good to see except for the times when she was a little grouchy. That was only in the morning before she was fully awake.

That didn’t end when Kevin left. She’s been a little gruff with me this morning. She was in the shower by 9:00 and ready for Panera just after 10:00 and now seems to be all right. The first thing she said to me this morning was “What’s your name?” She followed that with “What’s my name?” Before we left for Panera, she asked my name again. After I told her, she said, “You’re a nice guy.” I think much of her gruffness is an attempt at humor. Mostly, she is trying to tease me, but it doesn’t come off that way. It was this behavior that led me to stop teasing her quite a while ago. There were times that I am sure that I offended her, especially early in the morning before she was wide awake. The change in my behavior worked. It’s only in the past few days that I have seen this emerge again. I unwittingly teased back. That isn’t a good thing. I will need to be more careful in the future.

That leads me to something else. Having read quite a few caregivers’ experiences, I recognize that we all make mistakes we wish we hadn’t made. I did that earlier this week but didn’t realize it until this morning. Among the potential side effects of Aricept (Donepezil) is diarrhea. To counter that I include an antidiarial with her nightly meds. I forgot to do that when I prepared her pills this week. She got by all right until this morning. Fortunately, she hadn’t developed a serious problem, but I am sure that it was unpleasant for her. She never said a word to me. I just found a few traces of the problem around the toilet this morning. She has only two medications that have noticeable effects. The other is Venlafaxine. I like to avoid these problems and feel bad when I don’t make sure she gets these meds. The good news is that missing the antidiarial was a first. There have been several times that she has missed Effexor (venlafaxine), but I have always discovered it the next time she was to take it.

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Changes Abound

After a rough start yesterday morning, we had another pleasant day with Kevin. Kate was a little harder to wake. That may have been a result of her getting up early two days in a row. When she did get up, she was a bit grumpy. She seemed more herself at lunch, but when we got home she was tired. I made a trip to the bank. When I returned, I suggested that we watch a little of Les Miserables. I was hoping that might perk her up. It didn’t work. That was the first time I had seen her react with so little interest. She finally got in bed, and I turned it off. That gave us another thirty minutes to get ready to leave for dinner.

The highlight of the day was having a birthday dinner with friends from church. One of them had been involved with the youth program when Kevin was in high school. He has kept up with her over the years. We have gotten together with her and her husband several other times when Kevin has been with us. We had lots of laughs and good conversation. Kate felt very comfortable and participated in the conversation to the extent possible. Several times she had to ask us who or what we were talking about. It is very difficult for her to follow conversations as they flow quickly from one person to another. I was glad to see her asking for us to clarify things. That is something I have never her seen her do with the people we sit with at Casa Bella on our music nights. There she remains silent and never understands what we were talking about.

As she changes, I am adapting as well. Knowing that she might wake up and not realize where she is, I started leaving the doors open into the family room. Previously, I have been sensitive to waking her and tried to minimize any noise and light from disturbing her. Now I believe it is more important for her to hear me and know where to find me. I am also going to be checking on her more frequently. I’ve also thought about putting a monitor in her room connected to a speaker in the kitchen so that I might hear her more easily if she should call me. It’s not that I have tried to pay close attention to her in the past. It’s just that I feel a need to increase the attention as her memory gets worse.

Over the past week or so, she has become even more dependent on me to help with her clothes. For the past four or five days, I have been getting her clothes out for her and sometimes helping her put them on. One of her biggest problems is remembering where her clothes are. I put them on the chair beside her bed. That is what she had been doing before I took over.

Sometimes she doesn’t notice them at all. More frequently, she sees them but moves them to a different place and often separates them. Then I have to help her find them. When she can’t find then, and I am not there, she goes to the drawers in my bedside table and/or to my closet where she gets into a variety of my things. I may have mentioned that the other day she had put on a pair of my winter pajama pants and was going to wear them instead of the ones I picked out for her. I came in after she had them on and showed her the ones I had chosen.

I see significant changes that sadden me. At the same time, I am glad that we have so many happy moments. I know there are more sad ones coming. We are both adapting. I am glad to say that I am not yet overwhelmed by the changing responsibilities, but I know I will need to have extra help at some point. That may come sooner than I would like.

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Confusion/Anxiety

I checked on Kate about 9:30. She was still in bed, but awake, and looking a little confused. I walked over to her and ask if she were getting up. She said, “I don’t know.” I could tell by the tone of her voice that she was confused. She seemed a bit calm, but she was similar to other times she has had an anxiety attack. I got into bed with her and asked if I could hold her. She nodded but didn’t say anything. I told her my name, that I was her husband, and would take care of her. I also said, “You are Kate Creighton. You and I have been married 55 years.” Not wanting to overwhelm her, in bits and pieces I also told her the names of her parents, her brother, and our children. I also mentioned our courtship and my working at the funeral home. Nothing clicked. Periodically, she asked my name and hers.

Then I put on some soft music. She said, “I like the music.” She didn’t say anything more and went back to sleep. I got out of the bed and told her that I would be back in a few minutes. I let Kevin know that I was going to be with her a while longer. It is approaching 10:30. She seems to be sleeping soundly. I have turned up the volume on the music. I’ll give her a little more time to sleep. Then I will see if I can gently wake her up.

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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.