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Returning to Our Routine

After six days on the road, Kate and I returned to our normal routine today. It felt right. It wasn’t completely normal. I actually got up over an hour later than I often do, 7:15 compared to a normal get up time between 5:30 and 6:00. I woke up earlier at 4:20 and 6:00 and decided to sleep a little more. That decision was prompted by the fact that I am still nursing a cold that has been hanging on far longer than usual. I felt like this was a good day to take it easy. I didn’t even take my morning walk. That was partially influenced by the temperature around 30.

Kate was up before 8:30 and ready for Panera about 9:30. We were there an hour before she was ready to come home and wanted to work outside even though it was still 36 degrees. After she had worked for an hour, I suggested we go to lunch at Carla’s Trattoria. We go there almost every Tuesday. Even though we had eaten well, actually too well, over the holiday, we splurged and finished our meal with some of Carla’s homemade salted caramel gelato. From there we dropped by the church to make a last-minute payment on our church pledge and then by Walgreens to pick up a couple of prescriptions.

When we got back home, Kate told me she wanted to go back outside. I told her that would be fine. Since it was then 39 degrees, I thought maybe she might not be out too long. I underestimated the attraction of the yard. She was outside over three hours and happy as a lark. She and I have often said that working in the yard is her therapy. There is more truth to that than we originally believed. She is able to work for hours though not usually with weather in the thirties. I think I mentioned in an earlier post that she had wanted to “pull leaves” at Kevin’s house. On two occasions she actually did pull a few as we walked from the car to the house.

We finished the day by going to dinner at one of our other local favorites. We enjoyed our dinner and then came home to relax. Kate got ready for bed, and I watched the PBS Newshour that I had recorded earlier. It was a good first day home.

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Everyday Experiences

After we walked out of Applebee’s where we had lunch today, Kate asked, “What is this place?” I told her, and she said, “I knew that. . . . It just wouldn’t come to me.” Then she pointed to the sign on the building. I said, “I have that same experience sometimes. It’s funny how that happens.”

As we turned onto our street, she asked if she could work in the yard. I told her, “That would be fine. I know you will enjoy that.” She gave me a surprised look and asked, “Clippers?” Again, I told her yes. She gave me another look of surprise. I smiled at her and said, “I’m just big-hearted today.” She said, “Well, that is true.”

These are just little incidents, but I mention them because I think they typify the way we relate to each other. I do my best to keep our conversation light-hearted so as not to hurt her or make her feel bad in any way. I can’t really be sure if it works. I do know that this kind of experience is much more common than moments of irritation on the part of either one of us.

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Catching Colds

For the past several days, my nose has bothered me in the morning. Yesterday afternoon, I noticed that Kate was coughing periodically. After dinner, the coughing increased. By this morning, it was clear that we both have colds. So far, they both seem mild. I have been taking Benadryl for the past few nights. I wondered about giving it to Kate but was concerned about possible interactions with medicine she is currently taking. A quick Google search confirmed my suspicions. She takes trazadone. I have been aware that it is commonly prescribed for people with dementia. It is an antidepressant that is sometimes given as a sleep aid. When combined with Benadryl, it can augment the usual effects of these drugs. In Kate’s case, she doesn’t appear to have a problem with a runny nose. The cough, however, can be annoying to her and to those around her.

I find myself a bit irritated when I get a cold, but I try to remind myself how infrequently that has occurred over the past few years. In fact, one of the ways in which Kate and I have been fortunate is not having other illnesses to contend with. I can’t remember the last one I had, but I am sure that it is more recent than Kate’s. Since they seem mild, I am hoping we will be rid of the bug in the next few days.

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Sign Language Can Be Confusing

Kate continues to use hand signals to ask some of her questions. Most of the time I understand what she is asking, but not always. Take this morning, for example. We were waiting at a stop light on the way to Panera when she looked at me and pointed in the direction of her cup sitting in the holder of the console. She also had the lid of the cup in her hand. I thought she was asking whether or not to take her cup into Panera, but that is something she is more likely to ask when we arrive at another restaurant. She gave me a disconcerted (irritated) look, and I told her I didn’t know what she wanted. That prompted another look. Then I realized that what she wanted was a napkin. I try to keep them in the car to wipe the saliva from her mouth. (She still doesn’t swallow her saliva.) When I realized that was what she wanted, I opened the console and gave her a napkin. Then I said, “I thought you wanted something to do with your cup.” She said, “Nice try, but I’m not going to let you get away with that.” I said, “Well, I usually do a pretty good job.” She smiled and said, “Yes, you do.”

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Confusion This Evening

Kate worked outside from the time we returned from lunch (about 2:00) until I called her in for dinner about 5:15. As she has done over the past few months, she came in right away. You may recall that getting her to come in had been a problem for a good while. It wasn’t that she objected. It’s just that she would forget to come in. As she came inside, I asked if she wanted to shower before going to dinner. She said she did. Then she asked by hand signals which bathroom to use. In a few minutes, she came into the family room where I was watching a football game. She said, “Shoes” and pointed to her stocking feet. I went to the garage where she had left them and brought them to her. It was obvious that she had forgotten about showering. Apart from a few soiled spots on the top she was wearing, she looked fine, and I didn’t suggest that she change.

While we were eating, I received a text from Jesse who was in Indianapolis with her family for the weekend. They are big Tinan fans and are attending tomorrow’s game with the Colts. She had attached pictures of her boys at Topgolf. I showed them to Kate, and she asked their names. When I told her, she gave her usual response, “I know that; it just wouldn’t come to me.” Then she asked, “Who is my daughter?” I told her, and she gave a similar reply. I said, “That’s all right. Sometimes names just don’t come, especially when you are tired. You lost some sleep over the past few days.” Then she said, “And when you are hungry.”

During the meal, I told her that I was sure that Kevin’s family was glad to have Brian home for the holidays. There a pause. Then she said, “What’s his name again?” I told her. Then she asked, “Who are his parents?” She has asked this question a lot over the past month or longer.

When we got home, I went to our bathroom to brush my teeth. She was coming out. I told her I would get her medicine. She said, “I want to brush my teeth, but there’s not any of the stuff in there.” I told her I thought there was. I went to the drawer where the toothpaste and her toothbrushes are kept. They were there as usual. She just didn’t remember where to look. She has toothbrushes and toothpaste in each bathroom. She must have forgotten where it is kept.

A few minutes later, she walked into the bedroom with her robe. This has become rather typical. She gets a robe instead of her gown. When I asked if she wanted me to get her a gown, she said she did. This is also her normal reply to that question. I still haven’t figured out why she does this. Her gowns and her robes are all together in her closet. It just seems like it is easier to find a robe.

Throughout all of these things she has been in a good mood. She is unusually cooperative these days and happy as well.

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One Reason I Say We Have Been Fortunate

As we drove up to our house from Panera, Kate asked if she could use her clippers. I said, “Absolutely.” She gave me the surprised look she always gives when I say this even though I have never said no.  Then she asked if I thought she would need a jacket. I told her not the one she had on but another one I would get for her. (The one she was wearing was a new one I had gotten for her last week. I didn’t want it to get messed up outside.) Then she asked me where she should start, in the front of the house or in the back. I usually say, “You can start wherever you like.” Then she will make a suggestion, and I say, “That would be fine.” I get a kick out of this question because she almost always asks it, but she never remembers what she has decided and simply starts wherever she feels like it when she goes out.

She came inside for a few minutes and then walked in the kitchen to go outside. I helped her with her coat. She asked where the clippers were. I told her they were on the top shelf of a shelving unit in the garage. She said, “I’m going to change my shoes” as if asking my permission. I told her that would be a good idea. (She has two pair of gardening shoes that, surprisingly, she has had for years without losing them.) As she was putting them on, she asked once again, “Where are my clippers?” She was standing in front of the shelving unit with a variety of gardening tools. I told her “on the top shelf.” She looked and finally saw them. Then she said, “You mean right there in front of me?” I smiled and said, “I didn’t say that.” She gave me a big grin and said, “But you were thinking it.”

During any given day, we have a number of such interactions. I work very hard to reinforce this kind of behavior, but I also believe that, by chance, our personalities just work together well to minimize conflict. I should add that this is more indicative of our relationship now than at earlier stages of her AD. I also believe this is something than could change as the disease progresses. There is much that we can’t control. Once again, I say we have been fortunate. I know that many others have a much more difficult time. I feel for them as I give thanks for our own experience.

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An Early Start Yesterday

I’ve always been an early riser. Until the sitter started coming in September I had been getting up at 5:00, and sometimes as early as 4:30, on Monday, Wednesday, and Friday to get to the Y. With engagement of a sitter, I started going to the Y in the afternoon. I stopped using an alarm quite a while ago because it disturbed Kate. I am settling into getting up closer to 6:00 every morning of the week.

Kate’s routine has been different since she retired from the public school system in 1990. Since the time of her diagnosis in 2011, she has rarely gotten up before 8:00. In the last few years, it has been common for her to get up, get some juice and yogurt, and then go back to bed for another hour or so. Her sleeping pattern, like other aspects of her life, vary a good bit from one day to another. My habits are much more regular, and I have tried to maintain a regular schedule during the time that I have been caring for Kate. That has worked well in terms of the times of the day we eat lunch and dinner, but I have deliberately not tried to put Kate on my morning schedule. We have always operated independently in the morning. We both like it that way. I let her sleep as late as she wants. That gives me some quiet time to take care of getting my breakfast, checking email, taking care of household chores like washing clothes or dishes, completing any obligations in my volunteer activities, and working on this journal.

On the whole, I am pleased with the way this has worked out. There are occasions, however, when I have to make changes in my schedule. Yesterday was one of those. I was just about to leave for my morning walk at 7:15 when Kate walked into the kitchen ready to go to Panera. I hesitated a moment and then decided to change to my regular clothes and go to Panera. As it turned out, that worked well. Kate was ready to come back home after an hour or so. She wanted to work outside which I knew would occupy her for a while; so I took my walk. It had warmed up a bit since 7:15, and the sun was out. It made for an unusually nice walk.

The rest of the day went well. The sitter was here at 1:00, and I left for a meeting at the bank. As I left, Kate and the sitter were outside. I told them I was off to a meeting. Kate said, “I’m in good hands.” Once again, I felt good that she has accepted having a sitter so naturally. After my meeting, I dropped by Whole Foods with my laptop and worked on this journal until time to relieve the sitter at 5:00. When I got home, Kate and the sitter were in the family room where Kate was working on her iPad. Since having a sitter, I have purchased a gift card at Panera. I told the sitter to use it if Kate wanted to go to Panera for a bagel while I was gone. They almost always do. This time Melissa told me that Kate had not wanted to go out. I’m not sure why. It made me wonder if she has felt a little self-conscious about taking her sitter with her. I would be a bit surprised since they have done this several times before.

We finished the day at our favorite pizza place. Then we came back home and watched the evening news while Kate worked on her iPad. It had been a good day.

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Bouncing Back After Kate’s Stomach Issue

Ever since Monday afternoon (3 days ago), Kate has felt fine, and she has been in an especially good mood. Yesterday she received the sitter as though they were old friends. She was outside working when the sitter arrived. I was already dressed for the Y. Even though Kate has accepted the sitter each time, I still like to make a formal handoff; so I walked the sitter to the front yard where Kate was sitting down on the edge of the flower bed. I said, “Anita is here. I think I will leave it in your hands.” Kate responded, “I think we can handle it.” I left, once again feeling good that she continues to be so accepting.

One of the things I am learning is that four hours doesn’t allow as much time as I could sometimes use. To go from our house to the Y, exercise, shower and dress takes a full two hours. If I have a meeting, that will take at least an hour. That leaves only an hour to run other errands without counting the drive time home.

This is causing me to consider what kind of schedule I want to work out. There may be times when an extra hour would do the job. Because Kate doesn’t like to stay in one place for 4-5 hours, I might encourage the sitter to take her to a Panera or similar place where they could get something to drink. Kate could work on her iPad. On the other hand, at some point I know that I will want to add an additional day. I don’t feel I am quite ready to leave her four days a week even if it is only for four hours each time.

We are going to get our hair cut in another hour. That is an event that we have worked out well. We go to the same person. We go together. I always let her go first. While she is getting her hair done, I often run short errands. When she has her hair colored, that gives me a little more time.

Tonight we will go to Casa Bella for something new. We have been attending Opera Night the first Thursday of every month for several years. When they added Broadway Night on the third and fourth Thursdays, we started going to one of those. They are introducing Jazz Night on the second Thursday. I think tonight is the first night. Kate is not a jazz enthusiast, but the person for whom the trio is named is a retired professor of music at the university and someone we have known for about 40 years. As always, we will sit with a couple who are in their 90s. The wife is the daughter of the woman who opened the restaurant many years ago. We enjoy their company as well as the music. It should be another great evening.

     

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More New Things

For a long time I have been sensitive to Kate’s behavior when we are eating out. Up until last night, she hadn’t done anything that was likely to be noticed by anyone who was not actually sitting at the table with her. The thing that has bothered me most is that she often arrives at a restaurant looking as though she is tired. Getting out of the car and walking into the restaurant she often looks sad and tired. When she is seated, she often sits there with her eyes closed as though she were going to sleep or is asleep. This behavior doesn’t bother or disturb anyone but me. I tend to feel self-conscious. I wonder if the servers and people around us might think the two of us have had a serious quarrel.

The other thing that has bothered me is her use (consumption) of paper napkins to soak up her saliva. Fortunately, several of the restaurants we patronize give us an extra supply with our meal, sometimes before. Often, we have only a cocktail napkin under each of our drinks. She goes through hers rather quickly and then often asks for mine. That is consumed quickly as well. Along with the salivation, she sometimes burps. It is not very loud but loud enough to be heard at an adjoining booth or nearby table.

Last night, she did something new. Kate had ordered a pasta entrée, and the server brought her a small dish of Parmesan cheese before our meals arrived. I noticed that Kate took several spoonsful and ate them. When her pasta arrived, she dumped the remaining cheese on top of the pasta. The latter is not unusual. She typically puts the entire dish of cheese on her pasta.

This afternoon she has been outside working in the yard. Most of the time she works in the front flower beds pulling leaves. Today she has been out back. At one point, I went out and noticed that she had cut one of the hydrangeas to the ground. I commented on it. She asked if that were all right. I told her it was fine. I just wondered if she remembered that they will die back for the winter and grow back next spring. I also said they would live nicely for another 2-3 months. I just looked outside. It looks like she cut down two plants and left one.

Yesterday she came in the backdoor and called me. I saw that she had brought a man with her. He told me that he does yard work for some of our neighbors. Then he took me outside and showed me the numerous shrubs whose leaves Kate has pulled off and have not grown back or not grown back fully. He told me they needed to be taken out and that he would do it. I told him I had plans and that I was not going to take them out right now. Kate was with us or I would have fully explained why I didn’t want him to do anything. My plan is to wait until Kate is in a later stage of her illness and to have all of them taken out, the flower beds cleaned out, and have a landscaper put in something new.

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Trouble with the iPad

Kate and I are seated at a table at Barnes & Noble where I have been checking email. She is working jigsaw puzzles on her iPad. It is rather peaceful here. That is an improvement over this morning when we were at Panera. That has nothing to do with the place but with Kate’s problems working her puzzles this morning. She must have stopped a dozen times because she kept hitting a button that took her out of her puzzle. Each time she would close up the cover on her iPad and put it down on the table. She never once asked for my help. Each time, I reached over to pick up the iPad and get her back to her puzzle. She was very discouraged. In fact, I thought that she would give up and want to go back home. That never happened. Finally, it was getting close to 11:20; so I suggested we go to an early lunch. She accepted.

As we walked out, she walked very slowly. Her facial expression looked as though she were struggling to make herself walk. She didn’t speak on the way to lunch, nor during lunch. I didn’t speak much myself. I just let her relax. As she so often does when we are out to eat, she closed her eyes and appeared to be going to sleep as we sat there waiting for our food.

She pulled leaves for a while after getting back home. It didn’t last long. She came inside and worked on her iPad in the family room, something that doesn’t often occur. I was finishing up a letter to a doctor at Kate’s family practice. He is actually the one who started the practice. I have been trying to contact her doctor since June 26 without success. Something strange is going on. I decided to write the senior doctor to ask his help. I first knew him as a neighbor. Later we had contact in connection with my service on the hospital’s foundation board. I have to believe I will hear something by early next week. He won’t get the letter until tomorrow or Friday. My concern is Kate’s salivation problem. Kate still is not swallowing her saliva. Even as I said this, it dawned on me that I have not seen her spitting out any saliva while we have been here. That is a good sign. It may indicate that she only spits it out when she thinks about the saliva.