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Another Mood Change

I have mentioned before that Kate is particularly sensitive to lots of things like temperature, noise, music, etc. It seems to me that this sensitivity is even more noticeable now than in the past. It doesn’t take much to startle her. She often responds audibly to someone’s sneezing or coughing. I have to believe the people around us sometimes hear her reaction. She is frequently hot in the house and likes to have the overhead fans turned on regardless of the temperature. I compensate by wearing a sweater.

This morning she wasn’t in a particularly good mood when we went to Panera. It wasn’t long before she complained about a particular rendition of a favorite Christmas carol that was playing. After forty-five minutes, she asked when we could go home. She said it was too hot there. We left to come home. Since it was a little before 10:00 and too cold to work in the yard, I told her I would build a fire and put on some Christmas music. She seemed to like the idea but didn’t express great enthusiasm.

When we got home, and I had the fire going, I turned on the music, Handel’s Messiah. I had the volume too loud for her. It startled her. I turned it down to a more acceptable level. She came into the room and has been working on her iPad for almost an hour. She has enjoyed both the fire and the music. We are back on track now. I think we have averted any further problems, at least for a while. We will go to lunch in another thirty minutes or so. This afternoon we are going to the Bijou where they are putting on a production of Miracle on 34th Street. I expect that will provide another good experience.

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Christmas Music And A Fire

This is a cold, rainy day with the prospect of some snow. We made our usual visit to Panera and Kate seemed to be having a good day. While we were at lunch, I checked something on my phone. Kate asked what I was doing. I told her. Then she said, “Why don’t I have one.” I hesitated a moment trying to think of just the right thing to say. I said, “You used to have one. We may have an old one at the house.” She gave me a disgusted look and said something about having to depend on me to drive her where she wanted to go. I realized she was talking about a car and not a phone. Then she said something that indicated she didn’t want to talk about it any further. She looked very depressed.

She was very quiet for the balance of the meal. I began to think of the afternoon and her not being able to work outside. That led me to check the Live in HD at The Met performance. We have frequently attended those in the past but have not gone this season. I saw that Hansel and Gretel was scheduled. I asked if she wanted to try it. She said she did. We continued with our meal. At one point she asked, “What am I going to do this afternoon?” I reminded her about the opera, and she accepted that.

The theater that usually has the operas was diagonally across the street from the restaurant. We walked over after lunch to discover that they were not showing the one today. I hope that doesn’t mean they have discontinued them. That left us with another option, to go home and sit by the fire. Both of us thought that sounded like a good idea.

On the way home I played a recording of Fiddler on the Roof. When Kate heard “If I Were a Rich Man,” she chuckled. That completely changed her mood. She continued to chuckle throughout the song. Once we were home, I got the fire going and turned on some Christmas music. She had her iPad in her lap, but she was so taken by the music and the fire that she put it down. At one point, I looked over at her and saw that she had her eyes closed and a smile on her face. She was happy. I must admit that brought a tear to my eyes. I love seeing her enjoy herself.

After a while, she got up and left the room. She’s been gone about 45 minutes. I walked back to the bedroom. She was in bed with the cover over her.

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Needing Help With Clothes

For the second day in a row, Kate came into the kitchen and asked, “What can I wear?” I asked if she would like me to pick out something for her. She said yes. It is obvious we are going through a transition. It doesn’t seem that long ago that she didn’t want me to help with the selection of clothes at all. She actually resented it. Over the years, she has accepted more involvement from me. I have attempted to respect her desire for independence in this area. I have tended to get involved only when we were going somewhere that would call for something a little nicer than her everyday clothes. I have also asked her to change clothes when they had gotten too dirty from working outside. That is something about which I have become much more accepting than in the past.

I feel her struggle for independence has been a good thing. It saddens me to see her turn over her clothes to me. That is one of the last things she has been able to do almost completely on her own. The primary way in which I try to help her is by picking up clothes that have been left in various places around the house and putting them in the laundry or back in the closet if they are clean. I also try to keep her clothes somewhat organized. I have never taken all her clothes out of the closet and started over. What I have done is to move her clothes so that the ones she wears regularly are all at the front of the closet, pants on the right side and tops on the left. I also arrange the clothes by color. I am not sure that it helps her, but it helps me when putting her clothes up or getting clothes out for her.

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More Signs of Confusion

Before we went to Casa Bella last night, Kate started to put on an outfit that I thought was less appropriate than she should wear. She told me to pick out something. I did and put the pants and top on the bed in her room while she was standing there. I left the room to get myself dressed. Shortly she came into our bedroom wearing the same thing she had been wearing. I told her she didn’t put on the things I picked out. She gave me a puzzled look and asked where they were. I told her I had put them on the bed. We walked back to her room. I found the top on a hanger in her closet. She had thrown the pants across a chair. It was obvious she had no recollection of my having picked these out for her. I stayed with her while she took off the top she was wearing. I told her she didn’t need to change her pants although they were more casual than the ones I had picked out. Again, I went back to get ready. She came into the bedroom where I was getting ready. Once again, she was wearing the top she had been wearing to start with. I went with her to her bedroom and helped her into the top I had picked out.

This morning she was a little disoriented. Shortly after 8:30, I went to the bedroom to see if she was up. She was walking back to our bedroom. She asked, “What can I wear?” I asked her if she would like me to find something for her. She said, “Oh, yes.” There was no effort to express her independence. I walked to her room and picked out something from her closet where there were many options she could have chosen. When I returned to our bedroom with her clothes, she thanked me and put them on.

On a related note, I have noticed that she is having increasing trouble putting on her clothes. For quite a long time she has frequently put on her tops and pants backwards or inside out. This tendency is increasing. Last night as we got ready to leave for Casa Bella, she had great difficulty getting her top on correctly.

She has had similar problems today with two different coats. Late this afternoon, we went to Panera. The sitter had taken her there earlier, but she was eager to get out of the house. We had another hour before going to dinner; so back to Panera we went. Since it has been cold and rainy today, I gave her a coat to wear. I watched as she struggled to get it on. She wanted to do it without my help. She ended up getting in the car with her right arm in the right sleeve but couldn’t find the sleeve for the left arm. Before we left Panera, she started to try to put on her coat and then asked me to help her.

Because it has been such a nasty day I was concerned about Kate’s being occupied while the sitter was with her. Working outside was impossible. That only left the iPad to keep her busy. As far as I could tell, that did not turn out to be a problem. Neither Kate nor the sitter said anything.

As she has been doing, Kate warmly greeted the sitter. She also thanked her when she left. After she was gone, Kate said something about how sharp she is. I said, “It must be nice to have somebody here with you.” She nodded agreement and then said, “It really is. More than I thought at first.” I still don’t know if she realizes she has two different sitters, but she has never mentioned anything that suggests she does. She seems equally happy with each of them.

We reached a significant milestone with the sitters this week. It marks the end of the first ninety days since they started coming. The importance of this is that our long-term care insurance doesn’t start reimbursing us until after that period. If everything goes according to plan, I will need to submit records of all the payments made through Tuesday of this week. After they have accepted them, they will reimburse us for all future expenses up to a daily maximum set by our policy (12.5 hours). At the moment, I can’t begin to estimate how long it will be before we hit that maximum. I hope it is a long time.

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Continuing To Enjoy The Christmas Season

As it is for so many people, the Christmas season is very special to Kate and me. Many of our favorite memories (now it’s really “my” memories) are of events that happened during this season. Our first date was to attend a performance of Handel’s Messiah at TCU on December 19, 1961. We became engaged a year later on that same day. Of course, there was the excitement of announcing the engagement to Kate’s family when everyone gathered for Christmas dinner at Kate’s parents’ home. Over the years we have had a number of special trips during the first or second week of December. We have especially enjoyed New York City at this time of year. All this is to say that I approach this season with the kind of feeling we associate with this time of year.

I have often conveyed how much Kate and I enjoy the performing arts. This year we are having a musical Christmas. We attended the Christmas program at the Flat Rock Playhouse this past Saturday as well as our Christmas dinner at Casa Bella that included a full musical program of popular Christmas music. Last night we added one more musical experience to this year’s celebrations. This was also at Casa Bella. This time it was a program of more classical Christmas favorites. This program also included a few of the popular ones as well as more audience participation. Kate joined in on the singing. She had a great time, and so did I. It was especially nice being with the Adairs. In addition, the restaurant was decorated beautifully, and we have seen so many of the people in attendance that we all seem to have a sense of being with close friends. If we hadn’t already been in the Christmas spirit, this would have given us a good jump start.

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Celebrating The Christmas Season

Last night, Kate and I attended a special Christmas dinner at Casa Bella. This is an annual event done in conjunction with Broadway Night. Christmas music makes up the entire musical program. That includes not only the musicians who entertain us, but also those who are in the audience. The formal program consisted of selected music from “The Winter Rose,” a cantata by Joseph Martin. Neither of us was familiar with the music, but we and the rest of the audience enjoyed it. Apart from the beautiful music, we sat once again with the same couple we usually sit with. They are both 93 and in great shape. We loved sharing another evening with them.

That was the second of a number of Christmas events we will be attending this week and next. I am happy that we are able to enjoy the season in this way. I only wish Kate were able to fully appreciate it. She does enjoy the specific events like last night, but her memory doesn’t permit her to retain any sense that it is the Christmas season and to reflect on how much we have enjoyed it in the past as well as the present. She doesn’t say anything about Christmas or anything about the outside decorations I have put up. Even when I showed her what I had done, she was only able to say, “That’s nice” without a lot of enthusiasm. This is another characteristic of her AD. She is simply much more even in her expression of emotions except for things that she especially likes or dislikes.

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A First

Kate and I were to attend a program of our music club this evening. Although its members are involved in a wide variety of musical genres, there is a heavy orientation toward classical music that is reflected in our programs. Kate, whose taste in music is more in the direction of popular music and popular classics has never been as taken with the club as I have. For that reason, she hasn’t attended a meeting in over a year. Last year, I left her at home by herself. I haven’t felt comfortable doing that this year. Since the Christmas program is always a choral group that sings a variety of Christmas music much of which is well-known, I thought I might take her to this one. I am the treasurer, and I needed to deliver a couple of checks as well.

Suspecting that Kate would not be excited about going with me, I decided to test the water by telling her of the meeting several times over the past three days. Each time she had forgotten, and each time she groaned. Then I told her that I thought she would like the program and that we would not stay long and come home right after the program ended instead of staying for the reception afterwards. Each time she agreed to go.

Late this afternoon, I mentioned it twice, once at dinner and once again after we got home. Once again she was not happy about it but said she would go. I picked out her clothes and laid them out on her bed. She was happy about that. I left her to get dressed while I wrote out a couple of checks. About ten minutes later, she came out in a night gown. I said, “You’re in your night gown?” She looked at me with great surprise. I reminded her of the meeting. She had completely forgotten. I brought her clothes back to her. Then she said she didn’t want to go and wanted me to go without her. I told her I didn’t feel comfortable leaving her alone. I probably could have coaxed her into going. I didn’t want to do that. I told her we would stay home but we would have to take my checks to someone else to deliver to the correct parties, and that is what we did.

On a number of occasions Kate has not wanted to go somewhere, and I have made the same decision. The difference tonight was that I had a responsibility to deliver the checks and had told several people that we would be there. In addition, we are supposed to let the secretary know if we cannot attend. The assumption is that the RSVP would come earlier than the time we now had before the meeting.

There is really no great loss in our not having gone, but it was a program I believe Kate would have enjoyed. I know that I would have. I also felt that this was likely to be the last time we attended as a couple.

It is also an indicator of Kate’s continuing downward spiral. In the future, I will need to arrange for a sitter the evenings the club meets. That is only four times a year, only two of which remain in this year. At times like these, I try to be thankful for how slowly she has progressed to this point. I never thought when she was diagnosed seven years ago that I would even have considered her going as a possibility. I am both sad and grateful.

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More On Kate And The Sitter

When I arrived home this afternoon after going to Rotary, the Y, and Whole Foods, I found Kate and the sitter in what we used to call Kate’s office. I now just refer to it as Kate’s room. She still has an office chair, a desk and a printer in there, but she hasn’t used them in several years. She keeps most of her clothes in the closet and uses it as a dressing room as well as retreat when she is tired of being in our bedroom or the family room.

Kate was sitting on the bed, back to the headboard and legs stretched out in front of her, working jigsaw puzzles on her iPad. Anita was sitting in a chair watching something on the TV. I asked if they had been back to Panera. Anita said they had. That would have been Kate’s third time today. I took her for her breakfast muffin. Then I took her there for lunch before I going to Rotary. As Anita was leaving, I thanked her. Then Kate said, “I thank you too. I felt better having you with me.”

I had wondered if the sitter provided Kate with a sense of security. Her comment suggests that she does. Perhaps that is why she has been so accepting. At any rate, it always makes me feel good that she is so comfortable with my leaving her with a sitter.

 

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It’s Beginning To Look A “Little” Like Christmas

Like everyone else Christmas is a special season of the year for Kate and me. We used to do all the things that usually accompany the season. Kate always loved these things, decorating the house, shopping for just the right gifts, and sending Christmas cards. Over the years, we have done less. Sending Christmas cards was the first thing to go. I don’t recall exactly when that happened. I am reasonably sure it preceded Kate’s diagnosis. Come to think of it, that might have been one of the earliest signs of her AD. I do know that it was things like that that caused me to recognize she was making changes that didn’t match her long-standing personality.

Since the diagnosis, decorating the house had become a priority only when we were entertaining during the Christmas season. We gave up hosting any Christmas events several years ago. For several Christmases, we have done next to no decorating. It was never something that I had been actively involved with. My responsibility was the tree and in the past four or five years an additional tree in the front yard. Our area garden club sponsors an annual Christmas tree sale and encourages everyone to put a Christmas tree in our front yards near the street. Apart from that and a wreath, I don’t think we put up any decorations last year. I know we haven’t had a real tree for a while.

This year, I felt like I should take the lead and do a little more. First, I tried to convince Kate to help by locating our decorations and going with me to buy a few things. She wasn’t interested; so I took care of this myself. I bought a new wreath and put it on the front door. I bought some red bows and ribbons and attached them to some greenery and put one in each of the windows on the front of the house. Yesterday afternoon, I also put up the outdoor tree and the lights. I located a small artificial tabletop tree for a table in the family room. I found several hangers for the mantel. Now if I can only find the stockings, we’ll be set. Years ago, Kate had bought a 3-foot Santa that she has always placed in the family room. I have done that. This is only a tenth of what Kate used to do, but it is something, and we plan to enjoy the Christmas season. We would have done that anyway, but I am thinking this may be the last Christmas that Kate will be able to appreciate. I’d like it to look a little like Christmas.

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There’s A Difference Between Short-Term and Immediate Memory

During the early stages of Kate’s journey, I thought “short-term memory” referred to remembering things that occurred yesterday or this morning. As time has passed and her condition has worsened, I am now focused on what is called “immediate memory.” That is just what it sounds like and is very important in coordinating with people. A few minutes ago, I observed a good example of Kate’s very weak immediate memory.

We are at Panera, and she got up to go to the restroom. When she returned, I noticed a label on the pants she is wearing. The pants were inside-out. This surprised me because I had noticed the same thing at home before leaving. She had taken them off and put them back on again. When I mentioned this to her, she went back to the restroom to change. Then she returned again wearing them inside-out. This time I haven’t said anything. I suspect we will go home shortly. I will tell her then so that she can change before we go to lunch.

Another example of weak immediate memory occurred at home before coming to Panera. I had placed her morning pills on the island in the kitchen with a glass of water beside them. I do this almost every day. I thought she had started taking her pills but noticed that she opened the cabinet and took a glass that she was about to fill with water. I told her I had a glass of water on the island with her pills. She turned around to take her pills while I started getting ready to leave. Then I heard her say, “Somebody put salt in this glass.” When I looked up, I saw that she had picked up the glass that I was using to gargle with salt water. I had deliberately put the glass in a spot where I thought she would not see it. I was wrong again. I reminded her of the glass that I had put with the pills. This time she got it.

Perhaps the most common daily example of this involves her clothes. Whether she puts her own clothes out to wear or whether I do it, she frequently forgets them and gets something else to wear.

Her reaction to these things is different now than in the earlier stages of her disease. At that time she expressed more frustration and depression. Now I don’t notice any emotion. I think that occurs for two reasons. The obvious one is that she has no memory of what she has done. The other is that she seems to have reached a point at which she is not as bothered by how others perceived her nor how she perceives herself. I usually don’t say anything to call attention to these things, but sometimes I do. When that happens, she often says something like, “Who cares?” In some ways, I am both surprised and pleased that when I tell her about clothes that are either inside-out or backwards (both of which are very common), she often thanks me.