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Boredom and the Need for a Change

Over the past few years I have come to recognize the value of a routine for Kate. As someone with a touch of OCD, I have always liked routine, but that is something that does not come natural to Kate. As I have assumed a greater role as the person in charge, I have guided us into a regular daily pattern of activities. That involves letting her sleep as long as she wants. Learning very early that she likes to get a change of scenery, I started taking her to Panera to get a muffin. This soon became a habit that she latched on to with ease. She likes getting out of the house. She likes the muffin, and the bonus is the social activity there. She doesn’t like to stay any one place for long whether she is at home or someplace else. If we get to Panera early, we are likely to get back home for a break before lunch. If the weather is agreeable, she will work outside until I let her know that it is lunch time. I established lunch to match my own preferences. We go anywhere between 11:30 and noon, sometimes slightly later. After lunch, she is likely to go back outside. She used to stay out as long as three to four hours. Nowadays, she is not outside longer than an hour and a half to two hours. That often leaves a span of time during which she likes to leave the house again. At first, I took her back to Panera. More recently, I have sometimes taken her to Barnes & Noble. We go to dinner between 5:30 and 6:00 and are usually back home between 6:45 and 7:15. Then comes the most relaxing part of the day for both of us. We go back to our bedroom. She usually gets ready for bed and takes a seat in her chair and works on her iPad. I sit in mine and watch the PBS Newshour that I record every night. Anywhere between 8:00 and 8:45, Kate is ready to get in bed. Sometimes she continues to work on her iPad in bed. Other times, she puts it up and goes to sleep.

My point is that this routine seems to minimize and relieve the boredom she feels if she spends too long at one task. That is especially true because there are so few things she is able to do on her own. I can easily understand. If I could only work on my iPad and go outside to pull leaves off the shrubs, I would be bored as well. It is remarkable to me that she is able to spend so much time on her iPad. It is only possible because we are changing locations throughout the day.

This brings me to comment about travel. At home the schedule takes care of itself. She gets along pretty well. When she is bored, we move to something else. That seems to work very well. When we are traveling to visit family, the routine is different. Often there is no set routine because our time is viewed as an opportunity to simply enjoy time together. The problem for her is that she is unable to fully participate in most of our group activities that involve conversation, games, or things like watching a football game.

This brings me to this afternoon. We didn’t arrive at Kevin’s house this morning until it was getting to be time for lunch. All of us went out for a nice lunch and came back to the house. I was hoping that Kate would take interest in a game Kevin’s family had learned from Kate’s cousin, Tina. She was never able to become engaged and went into the family room to work on her iPad. After playing the game a while, I went in to check on her. Her look conveyed she wanted to move on. I’ve learned to recognize it at home, at Panera, Barnes & Noble or visiting family on holidays. I decided it would be best for us to leave and took her to Panera. She was just fine. Before we were there an hour, she gave me the same look. I asked if she would like to return to the hotel. She did. We’ve been here about forty-five minutes. A few minutes ago, she closed her iPad and is resting on the sofa. She asked me not to let her go to sleep. We will leave soon for Kevin’s and then go to dinner.

I have heard other caregivers talk about the challenges of traveling with their loved ones. We have been very fortunate to travel as long as we have, but now I see that we are approaching the time when that will be a thing of the past. It is hard on her and demands a lot of me to watch out for her. It is also very confusing for her. She still is not sure where we are. Today at Kevin’s, she pulled away for a moment and asked, “Where do they live?” I told her once again that they live in Lubbock. Tonight at their home, she asked, “Who lives in this house?” I told her that Kevin and Rachel live there. As she was getting ready to turn out the light and go to bed, she asked, “Where is this?” I asked if she meant the city. She said yes. I told her again that it is Lubbock, but that she would not have to worry about where she was tomorrow when we were back home.

 

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A Nice Thanksgiving

We had a very pleasant Thanksgiving with Jesse and her family. Once again, we ate well. I suspect that is true for most of you reading this message. It was a relaxing day. The four adults were awake and downstairs before 8:30. The boys didn’t come down until a good bit later. Kate and I were mostly observers in the day’s activities. Jesse and Greg worked off and on the entire day. Jesse fixed everyone’s favorites. That meant mac ‘n cheese for Randy, bow tie pasta for Ron, and asparagus casserole for Kate and Jesse. The only sad part for me is that Kate no longer remembers that the casserole was a holiday dish that her mother made when she was growing up. She simply ate it without comment, and in the midst of all the activity, I forgot to tell her how much she had always enjoyed it. She loves reminiscing about her mother and would have liked thinking about other holiday favorites that she made for her family.

Like many families, we had the football games on all afternoon and into the evening. We didn’t sit down and watch any of them, but we kept up on the scores and periodically sat in front of the TV during critical portions of the games. After dinner last night, we watched Christmas with the Kranks. I hadn’t seen it before. It was one that Jesse’s family had seen before and loved. It was fun to watch as a family. Jesse and I were the primary viewers. Kate worked jigsaw puzzles on her iPad the entire time. She got in a lot of that yesterday. Greg had a football game on his the bedroom. Ron went back and forth from the movie to the game, and Randy was playing games on his phone. Despite the fact that we were not all watching the movie intensely, I felt it was a nice family time that allowed each person to pursue his personal interests while still being together.

As I have noted on other trips, large blocks of time can be a problem for Kate. She doesn’t like to stay in one place for an extended period of time. That is an issue whether at home or on the road; however, it is easier to change locations at home. For example, we can run to Panera or Barnes & Noble. She can work in the yard. We are always moving from one place to another. This desire to change locations is compounded when we travel because she is also confused about where we are and when we are going home. Early in the day yesterday, she asked me when we are going home. I told her we were going home “tomorrow.”

During the middle of the day we played Uno with Jesse and the boys. We had a good time and had a few laughs as well. I didn’t grow up playing lots of games at home, but I have come to recognize how good they are at facilitating group engagement. Everybody has fun most of the time except when someone loses too much. Playing with Kate adds a special dimension to games. She can’t remember the rules, and when I would try to help her, she would resent being helped. She had a real sense that we didn’t believe she could do anything right. At one point, we all knew that she had a “wild card” in her hand with a good opportunity to use it. We kept telling her what a wild card is and when to use it, but she never recognized that she had one in her hand. It was only one of three cards. She simply didn’t perceive it. Despite this issue, the game was a success.

Sometime during the night, Kate screamed, “Help!” I asked what was wrong. She said something about “her.” I asked, “Who is she?” She said, “My helper.” I had been thinking things were going so well with the sitter. Suddenly, I wondered if she had been afraid of the sitter. I asked if she had done something to make her afraid. She said, “No.” The she told me the sitter was with her. There was apparently something else that had scared both of them. I asked what had happened. She said, “I don’t know.” She mumbled a bit. Then for the next few minutes, she periodically said something about her (the sitter) as though she were concerned about her safety. I told her everything was all right, that it was just a dream. She said, “I hope so. I would feel better.”

Dreams like this are not typical for Kate, but she does occasionally have them. Fortunately, most of them involve her days in the classroom. She is always giving instructions to her students in a very kind way.

It is now 9:30 a.m. Kate has not yet come downstairs, and I want to leave in the next 30-45 minutes. I think I will go upstairs to check on her. Jesse has gone to work. The boys are still sleeping. It’s been another good holiday with family.

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Another Example of Humor

I believe I may have mentioned this quite a while ago, but here is another example of our use of humor that helps us ease by some problem spots. Yesterday morning as we were driving away from the house to attend the Y breakfast, I had neglected to turn the fan up to a higher speed on the car’s AC. This is not terribly unusual for me, but I try to remember because Kate likes to have the air flowing even when I may feel just fine. As we were approaching the traffic light, Kate said (in a very disturbed voice), “Oh, its so hot in here.” I said, “Whoops, I forgot to turn on the air conditioner.” She said, “You never remember.” The she proceeded to tell me that I  never think of her needing the AC. She said if I were hot, I would turn it on right away. This doesn’t sound humorous to read, but the way she says it is funny. She says it in a manner which allows me to respond in like manner. I always say something like, “I’ll never do that again. I’ll remember next time.” Then she says, “We’ll see.” Often she says, “You’ll never change” as she gives me a dirty look that isn’t mean-spirited. This kind of exchange occurs rather frequently.

At the moment we are back at Panera where we had lunch about 11:15 before I had to attend a foundation board meeting. Before leaving, she expressed displeasure about here no having some place or “something” to do. She has been a little bored this week. When I got home, I asked if she would like to go to Lowe’s. She said she would but later. She was in bed in our bedroom working puzzles on her iPad. Then I asked if she would like me to look for something on Netflix that we could watch. She said she would, and I proceeded to look for something. We settled on a British TV series called “The Vicar of Dilby.” In a few minutes I noticed that she had stopped working on her iPad and had pulled the covers over her. I asked if she wanted to continue watching the program. She told me to do whatever I wanted. That led me to turn off the TV and return to the kitchen where I was going to check email and respond to a message from a friend.

About 45 minutes later, I heard her call to me. She asked if I could take her to Panera. She had obviously gotten bored. It is very unusual for her to want to go to Panera in the afternoon. In fact, this is the first time I recall her requesting it except in the morning. So we are here now, and all is well. As usual she brought her iPad. She was hot when we first arrived, but I believe the air conditioning has kicked in. It feels cooler, and she hasn’t complained.

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Moments of Boredom

I came home directly from the Y in order to take Kate to Panera. She was up and dressed in black slacks and her Harrod’s sweatshirt that she bought when she and Ellen were in London in 2002. She had the sweatshirt on backwards. I asked her about going to Panera, and she said, “”In a little while.” I got on the computer and checked email and took care of registering for a platelet donation this afternoon. At 10:15, I went back to see if she were ready. She indicated she didn’t care. It was obvious that she was down. I asked her about it. She said she was bored. I said, “”Then let me take you to Panera, or we could watch a BBC program on TV.” She said she didn’t want to watch a TV program. She agreed to Panera. I came back in the kitchen. Shortly she came into the kitchen wearing the same clothes. She said, “I hope I don’t run into anybody I know at Panera.” I told her I thought we would go directly to lunch from Panera.

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Off to a Rough Start Today

Kate and I got to Panera a little later than usual today (11:15 am). She had been quite bored and down this morning before coming. As I mentioned in my previous post, she has not been using her computer in the past few days, perhaps a week, and she hasn’t spent but very little time in the yard. That has left the iPad as her only source of activity.

I told her that we could come to Panera and then go to lunch and then visit a member of our Sunday school class, who is now living in a dementia unit at local facility. She accepted my suggestion without enthusiasm.

The funny, and pleasing, thing is that once we arrived at Panera, and she was seated at Panera, she smiled and told me that she felt better. We have now been here for an hour. She has been engaged with her jigsaw puzzles on the iPad. It is unusual, but she hasn’t suggested that I get her anything else to eat beyond the normal blueberry muffin that I ordered when we first arrived. This seems to suggest that she got a lift simply by getting out of the house.

I had planned to call a friend whose wife has Alzheimer’s about our getting together this afternoon. We have met before, but it has been a long time. Now I am hesitant to schedule anything until I feel comfortable that Kate is all right. These are the kinds of challenges one faces. I am in that in between time when Kate is not ready for a companion to stay with her, and I feel the need to be with her as much as possible.

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Boredom

After a couple of good days, Kate has fallen back into her slump. She has been spending almost all of her time on her iPad. I don’t think I have seen her on her computer for several days. When we have gone to Panera the past few times, she has not taken her computer, something that she has routinely done up until now. I may ask her about this. I suspect that she must have found that she is not able to work with it as well as she has done in the past. If she loses the ability to work on her photos, that is another low blow. I want to put together a photo album of our marriage and have asked her if she could help with that. She indicated that she would. I may suggest that we do a little of that this morning or afternoon. I am also going to call a couple in my Sunday school class and see if we can visit with them this afternoon. He is on dialysis and doesn’t get to visit us much. He has been with us only a couple of times in the past year.

’Kate’s mood affects me. When she is up, I am up. When she is down, I am down. I am going to have to work harder to occupy her in meaningful things. I have a list of things I am going to attempt. These include involvement with the Shepherd’s Center, a seniors educational program that meets at a Methodist not too far from us. I am also going to see if there are some volunteer activities that we might do together.

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Another Strange Incident

I got home from Rotary about 30 minutes ago. Kate was seated in her chair in her office working a jigsaw puzzle on her iPad. I can’t remember all the dialog, but this is what happened. She was relieved to see me and asked if she could come out now. I was puzzled. She indicated that she thought I had told her to stay in the back of the house. I apologized and told her I never intended for her to remain in the back of the house. She was relieved but also a little peeved with me and told me she almost went to her bathroom to sit in the tub just to get out of the room.

I turned on the stereo in the family room. In a minute she came in with her iPad and her sweater and looked ready to go. It turned out that she thought we were going to lunch. I learned this while we were in the car. She had wanted to go to Chalupes. When she realized we were not going to lunch, she said Panera was OK.

A moment later she said something about “their” coming to see us and that she was going to say something about what they had said about her mother. I asked if she were talking about a couple in our church. She said she was. Once again she said something about what they had said about her mother. I told her I was unaware of anything they had said. She was annoyed. It appeared that she felt I knew but couldn’t remember. When I asked what they had said, she said, “”Let’s just not talk about it.” That is pretty much her standard response to almost anything I ask.

3:34 pm

We are back home now. I wanted to add that this is one of those afternoons when she is feeling quite bored. She just looks depressed. Unfortunately, I didn’t take the iPad’s charger, and her battery ran down; so we came home about 30 minutes ago. I offered to show her my slide show of our trip to Africa. I thought it might interest her. She agreed, but her body language indicated she didn’t have that much interest. Finally, she came into the family room where I was setting up the show. After she sat down, she indicated that she was sleepy. I asked if she would like to rest before seeing the show. She said yes and is now lying down in our bedroom.

Tonight is a reception in connection with an upcoming symphony concert. We usually attend but have missed the last 2 or 3. I had thought we might go tonight. When I mentioned it to her this morning, she indicated she didn’t want to go. It was actually a little stronger than that. She was really indicating that she was not going.

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Signs of Being Tired or Bored

Just after 11:30 this morning we went to the Observation Lounge where we spent a little more than an hour. Kate moved even more slowly than she usually does. She looked very tired as though she might fall with every step. She worked jigsaw puzzles on her iPad. I read the New York Times, checked email, and read a portion of a Jon Meachan book on religion in American history.

We went to the Lido for lunch. I pointed out the options. She decided, without much interest, for me to get her some roast chicken. I got that accompanied by mixed vegetables and tomatoes. We had a generous helping of bread pudding for dessert.

From there we went back to the room where she got into bed. I checked email and the day’s printed schedule. Then I thought this might be a good time for me to go to the exercise room. I was up there an hour. When I returned she was still in bed. Now she was working on her iPad. She seemed forlorn. I asked if she were bored. She said she was. I asked if she might like to get out and get some ice cream. She accepted.

We walked up the stairs to the Lido. It took her forever. She seemed even more tired than this morning. I found a seat for her and told her I would get her some ice cream. When she was almost finished, she saw a man walk by with cookies. I asked if she would like some as well. She did. I got them.

I asked if she thought the trip was wearing her out. She was offended and indicated that it did not. I dropped the subject. I had hesitated asking her because I thought that might be her reaction, but periodically I decide I should try that approach. The reality is that she just can’t discuss her condition and doesn’t want to.

She is now back on her iPad while I am writing this post. We have dinner at Canaletto at 6:30. I will probably take her back to the room and then go to the evening’s entertainment, two illusionists.

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Problems Sleeping

I’ve always been a good sleeper, but over the past 2-3 years I have had occasional times when I wake up and can’t get back to sleep. In the past 6 months or so these have occurred somewhat more frequently. Several months ago at a routine doctor’s appointment the doctor asked me if I wanted something to take that would help. I told him no. Last week at another appointment neither of us mentioned it. I still feel the same way right now; however, I am reaching a point where it is something that I might consider if this gets any worse. I don’t usually have a problem while on vacation, but this is the second night in a row when I do have awakened and been unable to go back to sleep easily. Last night I woke up at 1:00 a.m. It was about an hour before I drifted off. This morning I woke up at 3:16 a.m. My mind began to think about Kate and our planned cruise in May. I asked myself if I am crazy. The reason for taking this cruise was to give her a chance to counter the boredom she is facing at home. I felt being with a people and being on board an interesting ship might minimize her periods of boredom. Thus far that is not the case. To be more specific, it isn’t boredom on the ship that is the problem. It is seeming so tired and uninterested in things. Yesterday she enjoyed sitting in the Observation Lounge and working jigsaw puzzles. She also enjoyed the movie we watched after lunch. She also enjoyed her spa treatment though she came right back to the cabin and got into the bed. It seems like the bed is becoming her security blanket.

All this is making me question if I am doing this for myself or for Kate. I clearly understand that change is not necessarily a good thing for someone with AD. I have been thinking it is easier for me to keep her entertained on a cruise than at home. Perhaps, it would really be easier and better for her if we stayed at home. At the same time I fear her vegetating there as well. The one thing that she still seems to enjoy is visiting with friends. We could continue to see the Greenleys, Robinsons, Davises, and Ellen in Nashville. We might even make a trip to see another friend in Birmingham.

There is much to consider now. As I think I mentioned in yesterday’s post, Kate’s deterioration is becoming more pronounced now. This is the first time I have been convinced of that. Typically, I am more guarded in saying that the signs are as clear as they seem to be right now. I know we will get through this, but I am just now beginning to face the reality that I am losing her. I feel sad and scared.

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All is well

I realize that I write most of my entries when something of significance occurs (usually something I feel is not so good). Right now I feel that Kate seems to be on a plateau. She is not any better than she was before, but she seems to be content. We continue to enjoy doing things and enjoy each other’s company.

Today she has been outside since we returned from our Y breakfast this morning. We also stopped at Lowe’s along the way. It must have been 9:45 when we returned. I had a board luncheon at noon; so she made do with a leftover sandwich and yogurt for her lunch. I suspect she only came in to get something to eat and/or drink and went back outside. It is now 3:50 and I got home around 1:45. She has been outside the whole time. At least she enjoys what she is doing.

The most troublesome symptom lately has been her boredom around the house. She still is able to do only jigsaw puzzles, work on the computer (photos), and the yard. She has also been doing some organizing of her clothes recently. The rooms don’t look as much in disarray as they have in the past.

She still gets irritated with me when we are going places. That is because I try to keep her posted on how much time we have. When I am able, I just let her take as much time as she needs. That works out well. I am coming to the end of my board responsibility with the foundation at the end of September. That will give me more free time. We should have fewer problems in the future.

Because of her boredom, I have been more diligent in trying to keep her entertained. I am even beginning to think about another trip, a cruise from Rome to Amsterdam next May. I am in a quandary trying to assess the risk of doing so. If her condition next May is the way it is now, I wouldn’t hesitate. I just don’t know. I am definitely leaning toward taking a chance and buying the insurance if it will cover pre-existing conditions.