Thoughts on Dependence, Appreciation, and Responsibility

Yesterday was another very nice day for Kate and me. It was just one of many. It was also a day when I was a little more mindful of how dependent she is. Like other days in recent months, she looked to me for guidance on things you might not expect. For example, she asked me if she should take a tube of toothpaste and her hair brush with us when we went to Panera yesterday morning. After returning from lunch she asked me where she should go to rest. I told her she could lie down on our bed or the sofa in the family room. She chose the bed.

We don’t normally think about it, but our rational thought processes guide us most of the time during a given day. We remember that we have an appointment at a specific time and understand how much time we have to prepare before leaving. We remember the rooms in our homes and where we sit when we want to relax, and where to lie down when we are tired. When people with dementia lose these abilities, they don’t know what to do next. That is where Kate finds herself much of the time. It’s hard for those of us without dementia to fully understand what this is like.

Thursday is the only day of the week we don’t have a regular place for lunch. Since she was up early, and we had gotten to Panera and had no other commitments until haircuts at 3:00, I took her to a restaurant we’ve visited only a few times. It’s almost a twenty-minute drive, but it’s a nice place and worth it occasionally. We had a very pleasant lunch. Just before we left, she asked me if I thought she should use the restroom before leaving. We decided that was a good idea, and I walked her to it. As I often do, I waited outside the door just in case she needed something. It turned out that was a good thing. When she came out, she had a paper towel in her hand and didn’t know what to do with it. She hadn’t noticed the trash container inside. I took the towel and put it in the trash. Then I noticed a roll of toilet paper on the floor. I picked it up.

As we drove away, she said, “You know, when I’m with you I feel at ease. I know I’ll be all right.” I said, “Do you feel uneasy when I’m not around.” She said, “No, I can handle myself all right. I just feel better when you are with me.” I’ve often heard her say things like “I’m glad you’re driving. I could get home by myself, but it might take me a while.” She recognizes she has a problem with tasks like these, but she also likes to think that she can really take care of herself if she had to. I am glad that is something she can hold on to.

Kate has always been appreciative, but she is becoming more so as her dependence increases. She thanks me for specific things like helping her find the bathroom or getting back to bed. She also thanks me at times when I haven’t done anything. I occasionally read several online message boards for caregivers. I realize that many caregivers don’t receive this kind of gratitude and, because of that, sometimes feel resentful. That’s not an experience I’ve had. That makes caring for Kate easier than it would otherwise be. In fact, her decline and her appreciation act together to give me a greater sense of responsibility and determination to see that her needs are met. Like other caregivers, I am guided by two broad goals – to keep her feeling safe and secure and to keep her happy. Her response to my efforts reinforces that commitment to her.

That reminds me of something else that is true for all successful marriages. Marriage involves two people working together. Kate and I are still partners. Her dependence doesn’t mean I am working alone. She’s unable to do much for herself now, but she is still doing what she can for me. She does that with her expressions of appreciation. That makes all the difference in the world. When she was first diagnosed, we said we would face this challenge together, and we are.

Thirty minutes ago, Kate got up to go to the bathroom. I went to her. She asked me where the bathroom was. I showed her. When she came out, she asked if she could go back to bed. I told she could and that I would let her know when she needed to get up for her eye doctor’s appointment at 10:30. She thanked me. As started to walk away, she said, “What is your name?” I told her. She said, “What is my name?” She said, “And what is your name?” I told her again. She said, “What is my name?” She repeated both questions one more time. She didn’t ask out of fear or anxiety. She simply wanted to know our names. She looks to me for help with things like that. I’m glad to be here for her.

Sleep and the Monday Sitter

It was almost a year ago that Kate began sleeping later. That has continued to the present although she sometimes surprises me by getting up much earlier. During the past month, she seems to have had less trouble getting up even when I wake her. I am doing that more now, especially on Mondays. That’s the day the sitter comes an hour earlier (noon) than on Wednesday and Friday. We have had a new sitter, Cindy, for four weeks. On two occasions, Kate hasn’t gotten up the entire four hours she was here. I have a sense that Kate didn’t feel as comfortable getting up with her as she did with the previous sitter.

That is leading me to make an adjustment in the way I prepare Kate. Yesterday, I made sure that Kate was up and dressed before Cindy arrived. In fact, we were ready early enough to make it to Panera for Kate’s muffin. We returned home at the same time Cindy arrived. That made for a smooth transition.

I made another change I feel good about. In the past, I would have gotten lunch for Kate. That meant that Kate and the sitter had a full four hours to fill. A year ago that would have been no problem. Kate and the sitter regularly went to Panera for part of the time and spent the remaining time at home. Since that time, Kate has not wanted to go to Panera with the sitter. I suspect she felt less comfortable going there with a sitter as she became more dependent on me. I have kept them occupied by providing DVDs of musicals as well as musical videos on YouTube. On some occasions they have spent the whole four hours watching them.

I’ve been looking for another diversion and think I have found something for them on Monday. Although I enjoy taking Kate to lunch, it is just too rushed for me that day. Even before Kate started sleeping later, I were too pressed for time getting her to lunch and back home by noon to meet the sitter. Sometimes I’ve asked the sitter to meet us at Panera or wherever we were having lunch that day. Yesterday I decided to have Cindy take Kate to lunch at Applebee’s. I thought that would offer them an informal situation where they could visit over lunch. That went well. Cindy said they were there quite a while. I plan to do that again.

I wasn’t surprised to find that Kate was asleep when I returned at 4:00. She has often napped in the afternoon, but that has become more common lately. It is not unusual at all for her to get up in time for lunch and then take a nap immediately after lunch. At first, I was concerned that she might have trouble going to sleep at night, but she didn’t. Recently, that has changed. She used to go to bed around 8:30. Now it is closer to 9:30 and sometimes 10:00. In addition, she doesn’t fall asleep as quickly as she used to. She is almost never asleep when I come to bed.

I haven’t worked out a plan to address the issue. Since it has been easier to get her up in recent weeks, I may try getting her up a little earlier. I would like that. That would enable us to have a more predictable lunch time. Like so many other things, I’ll have to see how it goes and be flexible.

In-Home Care

Yesterday someone I follow on Twitter reported a success he has had with a sitter for his wife who had told him, “She’s just like my sister.” I wish I could say the same about Kate and her two sitters. Her relationship with them seems to fall far short of that. It has been one year and five months since I engaged an agency to provide sitters four hours each Monday, Wednesday, and Friday afternoon. On the whole, it has gone better than I imagined, but there have been times when she wanted me to stay with her. That made it difficult for me to walk away. It was very much the way a parent feels when leaving a child at home, school, or a child care center.

Recently, we have had more success, and it involves both of our sitters. We have had to replace three of the Monday sitters. That wasn’t because of any dissatisfaction. Each of them has involved health issues of the sitter or her family. The one we have now has been with us three times. Kate was asleep the whole time she was here on her first visit. Kate has received her warmly the past two times she has been here. The two of them seem to be getting along all right. The first visit they spent the whole four hours watching YouTube videos of musical performances. The last time they watched Fiddler on the Roof. I am optimistic that will continue to go well.

We have been fortunate that the Wednesday and Friday sitter is the same one who started with us. I wouldn’t say that Kate thinks of her like a sister, but she is comfortable with her. Yesterday was a good example. When Mary arrived, Kate had just started looking at her “Big Sister” album. I suggested that she move to the sofa so that she and Mary could go through it together. Kate was happy to do that. When I told Kate goodbye, she didn’t express any disappointment. Her attention was focused on her album. I felt good when I left.

When I got home, they were both in the family room. Mary was watching TV, and Kate was resting in a chair. Mary told me they had spent some time with the album and then they had gone to Panera for a while before coming back to the house. I had left the TV in our bedroom set on YouTube in case they wanted to watch videos, but they hadn’t done so. I was happy that they had amused themselves without my having to structure too much of their activity. They seem to have gotten along well. Kate didn’t say anything that would have made me feel otherwise. I haven’t ask Kate how things went with the sitter in a long time. She never remembers, but I am encouraged that she doesn’t show any signs of bad feelings about Mary. More importantly, when I see them together as they were when I left, I can tell that Kate is quite comfortable with her.

I am still wondering when I might add extra help. Financially, there is no obstacle. We have already met our 90-day out-of-pocket costs for our long-term care insurance. The company will pay the total costs up to fifteen hours a day, but I don’t currently feel the need to have more time away. More importantly, I want to spend as much time as I can with Kate as long as we are able to enjoy doing things together.

I should add that I do sense the effects of the increasing responsibility of Kate’s care. I am discovering things I have left neglected or totally forgotten. One of the things I wonder is whether the greatest help would be overnight or during the day. I am getting up at night with her more than in the past, and I don’t always get right back to sleep. I could easily see that having someone here overnight could be of benefit. That would probably mean our moving to separate bedrooms. I’m a long way from being ready for that, but I know that time will come. I’m not going to worry about it now. In the meantime, I’ll continue with the status quo. I’m happy with it.

Thoughts on Telling the Truth (Again)

The issue of telling the truth to a person with dementia is an ongoing conversation. It comes up periodically on the various message boards as well as social media sites like Facebook and Twitter. There seems to be almost universal agreement that caregivers will find that telling the truth can actually be harmful. That happens because people with dementia often live in their own reality. They may believe that deceased parents are still living, that they themselves are living in another place than where they really live, or that someone other than one’s spouse is her spouse. To tell a person that her mother is dead can be hurtful. When a loved one asks where her mother is, it may be much better to say something like “She is at home.” The idea is to keep the answer to something that is brief and clear. There is little need for embellishment.

Up to this point, I’ve been telling Kate the truth except about her diagnosis. I haven’t mentioned her having Alzheimer’s since last summer when I did so on two separate occasions. Neither case created a problem. As time passed, I have been less willing to take a risk. I have been helped by the fact that, until this morning, she hasn’t had a serious concern about why her memory is so poor.

While I agree with the consensus that not telling the truth is often the right thing, I haven’t felt the need to apply that with Kate. That may be because she often asks me where we are, who I am, who she is, etc. It only seems natural to tell her the truth. That has worked well, but recently I have seen signs that I may need to be less truthful with her than in the past. One of those occurred last night.

As we walked from the car to the restaurant for dinner, she called me “Daddy.” Then she asked if I were her daddy. I told her I was happy to be her daddy. She pushed for the truth and asked if I were. I told her I was her husband. Once at the table, the subject came up again. This time when I told her the truth, she looked skeptical. She told me she thought of me as a good friend. She said she liked being with me and felt safe with me. What she said was especially interesting since she had said similar things to me when I assumed she recognized me as her husband. It gave me a different perspective about the things she says about me. I’ve always interpreted them as words that she would only use for a husband, but it became clear to me that there may have been many other times that she has thought of me as a good friend.

To date, I don’t think the truth has caused any problem, but another incident at lunch yesterday came closer to being just that. In that case, she brought up her mother and wanted me to tell her something about her. I began with “She was . . .” Kate quickly said, “Was?” In an attempt to soften the impact of what I had said, I explained that her mother had died thirteen years ago. Then I told her that she had done a really good thing for her mother. I told her that she had cared for her mother the last five and a half years of her life with the help of six or eight paid caregivers. Kate was very sad and teary. As I told her a little more about her mother, she recovered, and all was well. It did make me think about whether to tell her the truth again. She seems to want the truth, but I don’t want to hurt her. Knowing when it is best not to be truthful can be tricky.

Early this morning we had an experience that was a precursor to the one I wrote about in my earlier post. At 1:30, I started to get a cramp in my leg. I got up. When I got back in bed, I noticed that her eyes were open. She looked like she wanted something. I asked if she wanted to go to the bathroom. She did and wanted to know where it was. I told her I would show her. We walked to the bathroom. I asked if she wanted fresh underwear. She did. She thanked me. Before returning to the bedroom, she said, “You must have a wonderful wife.” I told her I did. She said, “She’s very lucky to have you. What’s her name?” I said, “Kate.” As we walked back to the bed, she kept thanking me. She said, “I don’t know what I would have done without you.” Before getting in bed, she asked where we were. I told her Knoxville. She said, “I mean where are we right now.” I said, “We’re at our house.” She said, “We are?” She didn’t press me for any further explanation. I was glad. At that time of the morning, I didn’t want to test my judgment about telling or not telling the truth.

Once in bed, she thanked me again. She seemed a bit nervous, not quite shaking but uneasy. I said, “You’re going to be all right. You are safe. I am right here with you. I’ll always be with you.” It wasn’t long before she said, “I feel better now. Thanks to you. <pause> What’s your wife’s name?” I told her. In a few minutes, she asked again. This time when I told her, she said, “That’s my name.” She was relaxed and soon asleep. I got up to record our conversation and returned to bed at 2:35.

Thought for the Day

Yesterday morning I saw this tweet from Judy Cornish (The Dementia Handbook). She is a vocal advocate of the importance of tapping into the intuitive abilities of people with dementia. I believe this particular tweet is also relevant for our other social relationships.

Whenever I am with someone experiencing #dementia, I assume the role of mood creator. I make sure that I am not radiating sadness, concern, or amazement at their impairments. For both of us, I am looking for something beautiful, funny, or heartwarming to enjoy.

Cornish also quotes Maya Angelou who said, “People will never forget how you made them feel.”

A 3-Card Day

I let Kate sleep until 11:30 yesterday morning. I wouldn’t have gotten her up then, but we had an appointment at 1:30. Here are her first words as she got out of bed.

Kate:             “Who are you?”

Richard:        “I am Richard Lee Creighton.”

Kate:             “What’s my name?”

Richard:        “Kate Franklin Creighton.”

Kate:             “I guess that means we’re married.”

Richard:        “Yes, we are.”

Kate:             “What’s your name?”

We were a little pushed for time, so I decided not to go our regular place for lunch and just get a sandwich at Panera. I didn’t tell Kate where we were going but was surprised that she asked what we were going to eat. I don’t recall her ever asking that before we have even left the house. I told her a couple of the sandwiches she usually gets. Several times before we got there (a 4-minute drive including a stop at a traffic light), she asked again what we were going to eat and if I thought she would like it.

When we arrived, she looked up at the building and said, “What’s that?” After seating her at a table and setting up her iPad, I brought her a muffin. She got started on that while I waited for the meal to be ready. When I brought her lunch, she had one tray with the muffin to her right. I put the tray with her food on her left. After she had eaten half of her sandwich, she went back to her muffin. In a few minutes, she pointed to her sandwich and apple and said, “Is this ours?” I told her it was. She took a bite or two and then another couple of bites of her muffin. Then she looked at the plate with her sandwich and again asked if it were ours. Once again, I told her it was. She finished her muffin and asked one more time about her sandwich before eating the rest of it.

Before we pulled out of our parking space, she looked at the building and asked, “What’s that?” I told her it was Panera and that it was a place to eat. She said, “Oh,” but she didn’t remember that we had just eaten there. As we drove out of the parking lot, I turned and drove by the front of Panera. She looked at the building and said, “What’s that?”

We went straight to Barnes & Noble from lunch and arrived a few minutes before the man we were meeting. I was in line to get a cup of coffee when he arrived. I hadn’t met him before. He works for the development office at the University of Wisconsin. Kate was sitting at a table working on her iPad. I introduced him to her. Then we had a good conversation. I started by asking him if he had been a student at UW. It turned out that he had not and had only worked for the university six or seven years. That led to a conversation about his past experience and happenings on the campus. That was mixed with my telling him about our own experiences there and what I had done since leaving Madison.

We talked for over an hour. Kate was never a student at UW but did work on campus. He and I made numerous references to people or events that she could not recall. In almost every instance, they were things that he must have been surprised about. For example, very early in our discussion I said that we had moved to Madison for me to get my PhD. Kate said, “Really, what in?” I mentioned that Kate had worked for the director of graduate admissions for the English department and who, coincidentally, had later married a friend of hers from TCU. She said, “Who was that?” I also said something about our going from Madison to Raleigh where I taught at NC State. Kate looked surprised and said, “What did you teach?”

This was one of those times when I thought about the little cards I carry that say, “My wife has Alzheimer’s . . .” I slipped it to him after several of her questions. I am sure that helped him understand when she asked other questions. I’m realizing the value of having them with me.

We came back home after lunch. Kate started working on her iPad but soon put it down and rested for over two hours. When I told her we would soon leave for dinner, she sat up and said, “Who are you?”  I gave her my name. She asked her own name. Then she wanted to know my relationship to her. As usual, she was surprised, but this was different. She was very firm in expressing that this couldn’t be. I asked if she would like to see our wedding pictures. She did, and I picked up “The Big Sister” album her brother Ken had made for her last spring. I sat beside her on the sofa and flipped over to the section that had some of our wedding pictures. At first, she had trouble recognizing everyone. After I identified the people, she began to recognize them in other photos though she was far from perfect. She did, however, become quite engaged with all the pictures. Her skepticism about my being her husband was completely over.

As we pulled out of the garage on the way to dinner, she asked my name and her name again. On the way, she asked where we were a couple of times. When we arrived at the restaurant, she asked its name. I told her it was the Bonefish Grill. Once inside, the hostess walked us to a table in the very back of the dining room. I followed the hostess but not too closely. Kate walks very slowly, and I didn’t want to get too far ahead of her. As the hostess and I stood at the table waiting for her, I said, “Have I told you that my wife has Alzheimer’s?” She said I hadn’t. When Kate approached the table, she looked at the hostess and said, “What’s the name of this place?” Kate didn’t understand her. Both the hostess and I repeated the name and looked for a sign on the wall, but there wasn’t one. I should add that we eat at Bonefish every Tuesday night and know the hostess. I am glad I had mentioned Kate’s Alzheimer’s.

Once the hostess left, Kate heard the toddler behind us making some happy noises. She turned around and asked her how old she was. The mother, who was holding the child, said she was three. Then Kate asked the mother, “How old are you?” The mother was taken aback and said, “Thirty-seven.” Kate said, “You’re young to somebody like me.” The woman and her daughter were seated with a group of five other women who would have been about the age of the woman’s mother. A few minutes later, I pulled out another one of my cards, walked over to the woman and gave it to her. As I sat down, she looked at me and smiled. Then she passed the card around to the others at her table.

When our server came to the table for our drink order, Kate said, “What’s the name of this place?” The server, whom we also know, looked surprised. I got another card out of my pocket and slipped it to her. Periodically throughout our dinner, Kate talked about the attractiveness of the restaurant. For her, it was just like the first time she had ever been there.

I wish I could know how you as a reader are responding to what I have written. This was clearly a day when Kate’s memory was at its worst. It is a definite sign of further decline. From my perspective, however, it was a good day. Kate was happy. She was talkative. She was inquisitive. We enjoyed our time together. It saddens me to see her so lost in this world, but that burden is eased when I know that she is happy. There is nothing I can do to change the symptoms that accompany Alzheimer’s. I can, however, see that her quality of life is the best it can be under the circumstances. Days like this reinforce my commitment to do just that.

The Cold on Day 8

I am gaining a better perspective on the lives of other caregivers who deal simultaneously with dementia and other health issues at the same time. To be sure, I am getting only a small taste of what others live with, but it does reinforce what I have said before. Kate and I have been fortunate in many ways since her diagnosis. The fact that both of us have been healthy is one of those. Both of us have had colds before, but it is more challenging at this stage of her Alzheimer’s. In the past it was easier for her to manage her own care with limited help from me. The only thing she can do now is blow her nose and spit out the phlegm that accumulates in her throat.

Despite this, her cold has not been especially serious. Her cough is still infrequent. She coughed just after going to bed and didn’t cough again until 1:45. She coughed on and off for about fifteen minutes and stopped. I haven’t heard any coughing until a few minutes ago, and it is now 9:30. What I do hear is her nasal congestion, but it is not constant. I’ve mentioned the sensitivity of the audio from the video cam monitor. Depending on the volume of the music I am playing in the kitchen, I can hear her breathing. When she coughs, I can hear it over any of the music I might be playing.

Apart from the cough and nasal drippage, the only sign of how she feels is that she seems more tired than usual. As I mentioned in a previous post, she slept until 2:00 on Tuesday. Yesterday, I woke her up at noon because she had a massage at 2:00 and a haircut at 3:15. She got along fine. When we returned home, she rested an hour and a half before I got her up for dinner.

She had more trouble working her jigsaw puzzles last night. Part of her problem is visual. Even when there is only one piece left, she has a difficult time locating where to put it. Each puzzle is on a solid-colored background. When the pieces are scattered, the background color is displayed where the pieces go. Thus, when there is only one piece missing, there is a picture with a rather glaring space colored like the background. To any of us, it would be immediately obvious where the last remaining piece should go. It isn’t obvious to her at all. Even when I put my finger on the piece and then on the spot where it goes, she often doesn’t know where to put it. One additional problem that is easier to understand is that she sometimes puts a piece in place but not precisely in place. Kate can’t tell that, and the app does not indicate that the puzzle is complete. Then she calls me. I locate the piece that is causing the problem and push it into place. Then she goes on to the next puzzle.

When she started working her puzzles a few years ago, she chose those with 42 pieces. Over time, I have selected the number of pieces for her. I dropped the number to 25, then 16. I think it is time to go 9 pieces. That’s the fewest available with this particular app. I hope that it will be easier for her after her cataract surgery on February 12.

A Day of Ups and Downs

It’s impossible for me to describe yesterday in a single word or phrase. A lot of things were going on. I believe and hope the overriding issue was Kate’s cold which had gotten worse during the previous night. The specific symptoms were, at least initially, her cough and her spitting up phlegm. In the middle of the night she had a coughing spell. She had been pretty much cough free during most of the day. I thought maybe lying down might be a problem and wanted to elevate her head with a larger pillow. It gave me my first glimpse of what it is like trying to help someone with Alzheimer’s. She doesn’t grasp instructions and gets more confused as you try to explain what you are doing or want her to do. It was a bit frustrating for both of us. This didn’t last long. It may have been less than thirty minutes. She and I went back to sleep.

A number of times I have mentioned ways in which Kate and I have been fortunate. One of those is that neither of us has had an illness that has made dealing with her Alzheimer’s more difficult. My experience that night gave me a sense of what some people deal with all the time. It also confirmed for me that as Kate continues her decline, I might very well want help during the night in order for me to get the sleep I need to care for her at other times.

I let her sleep yesterday morning. I felt that rest might be the best medicine. She awoke about 7:00, went to the bathroom and went back to bed. From the video cam I had noticed her getting out of bed and went to the bedroom. Her head was more stuffed up than the day before, but she was more clear-headed than usual.

About 11:00, I noticed she was stirring. I went to the bedroom. She seemed wide awake but relaxing in bed. I mentioned going to lunch and asked if she were ready to get up. She said she was. I didn’t push her. I let her take her time. She got her shower and got back in bed. I decided to forgo our usual lunch plans. At dinner the night before she coughed quite loudly a couple of times. I didn’t want to disturb anyone at our usual restaurant that is somewhat quiet and reasonably active on Sunday. I decided to get a quick lunch at Panera.

Before we were ready to leave, two things happened. First, Kate started coughing. Second, as I tried to get her dressed and take her medicine, I rushed her. I also had to correct her on several things. For example, it took a while for her to take her meds. She would take one and leave the others. I had to remind her several times she had more to take. Finally, she broke down. She said, “I just can’t do anything right.” She was also miffed at me for rushing her. Seeing a panic attack coming, I shifted into a more conciliatory style. That may have prevented a more serious attack, but it didn’t immediately stop her emotional reactions.

By this time, I felt it was best to get a to-go order at Panera and bring it back home. The two of us went in the car and brought our lunch back home. It was an interesting change. I think we have only eaten a meal at home two or three times in the past four or five years.

We had a very pleasant time at home between lunch and dinner. We relaxed in the family room while Kate worked on her iPad, and I read some autobiographical materials that a former roommate at TCU had sent me. Kate didn’t have any problem coughing and seemed to be getting along well.

I felt better about taking her out for dinner. We went to a small Mediterranean café near our home. I knew there wouldn’t be a crowd on Sunday night. Kate was very relaxed and talkative. Soon after we ordered, she said she was glad we had come back. She thought we were in Texas. I made no effort to correct her. She commented about the restaurant and liking it. Then she began to talk about “the girls” and also language differences. Pretty quickly I recognized she was having the same experience she had had a few days ago when she had her massage. At that time, I sensed that she was talking about being at a school in a foreign country. This time it started with a belief that we were in Texas. The rest of what she said was very similar in both experiences. One thing was different. The other day I speculated it might have been the cold medicine that was responsible. That was not true yesterday. She hadn’t had any.

Her remarks were not continuous. She didn’t constantly repeat the same things over and over, but she kept bringing them up as though she were continuing a conversation with me. This was something of a challenge. I didn’t want to tell her she was imagining everything. I also didn’t want to make up things to add. I simply acknowledged what she said and agreed. When she said “the girls are smart,” I said something like, “They really are.” This went on until after we were back home.

At home, Kate saw her iPad and said, “What’s this?” I told her and said she could work puzzles on it. She was confused about how to open the cover. I showed her. She said, “I hope I know how to do this.” She was confused about how to begin. I showed her and got the first puzzle up. She didn’t know what to do when the pieces were scattered. I ended up completing one puzzle myself just to show her. She worked them for a while before getting frustrated. I decided it might be time for some music therapy.

The previous night I received a phone call from another TCU friend and housemate. He follows my blog and is aware of our use of music videos on YouTube. He told me about a two choirs in Lincoln, Nebraska, that I might want to check out. One of those choirs is the Wartburg College Choir. After dinner last night, I found one of their videos of a concert tour in Germany in connection with the 500th anniversary of the Reformation. It contains beautiful music along with correspondingly beautiful churches and other notable sites. It was a wonderful way to end our day. It was like having an hour-long period of meditation.

As I helped her into bed, she said, “Richard, it’s been a frustrating day. <pause> I’m so frustrated.” I assured her that she could count on me to help her. We didn’t say anything more. This was one more reminder that Kate still recognizes that she has a problem even if she doesn’t know what it is or where it leads.

The Sitters, Music, and YouTube

What Kate and the sitters do has changed since I first engaged them a year and four months ago. That was a time when Kate and I were accustomed to going to Panera more frequently. We went almost every morning and some afternoons. When I arranged for a sitter, I bought a Panera gift card and told Kate and the sitter that they could go to Panera anytime they wanted. I remember how Kate’s eyes would light up when I said that. She looked at Panera as an outing. That was true even when it was just the two of us. With the sitter, I think it was also a way of breaking up the time until I returned.

That worked beautifully for almost a year. It began to change when Kate started sleeping later, and we weren’t going to Panera as often. I might have guessed that would make an afternoon trip even more appealing, but it didn’t. Like many things, I am not sure why. When I returned home, I often found that Kate was resting or had rested a lot while I was gone. That bothered me because I felt she wasn’t getting enough stimulation.

At the same time, I was looking for other ways to entertain Kate in the evening when we returned home from dinner. Our regular routine was for me to watch the evening news while she worked jigsaw puzzles on her iPad. I wanted her to have something else to entertain her, especially since she was beginning to have difficulty working her puzzles. I bought about ten DVDs of musicals that I thought she might enjoy. We would watch about an hour a night. Watching musicals like Les Misérables and Fiddler on the Roof could easily take us six nights. Kate loved it. She clearly has favorites. We watched Les Misérables seven times in one seven-week stretch last summer.

As I became more concerned about Kate’s time with the sitter, I decided to try the DVDs when the sitter was here. That also worked well. It was entertaining for both Kate and the sitter. I liked the idea of their engaging in something together even if it was a passive activity.

Gradually, I expanded the musical performances we watch at night by going to YouTube. Their selections are endless and growing all the time. The key is finding something that Kate will enjoy. During the fall, that meant a lot of Christmas music. I also discovered that The Tabernacle Choir seems to have one of the largest libraries of music videos. There are plenty of others as well. I often search for a particular singer, for example, Julie Andrews, Barbra Streisand, Sarah Brightman, Andrea Bocelli, The Three Tenors, etc.

My next step was to set up the YouTube videos for the sitter and Kate to watch. That has also worked well. One time during the Christmas season, I had set up one of the Christmas videos by the Tabernacle Choir. It was about an hour in length. I told the sitter she could turn it off at the end of the program. I also mentioned that if she didn’t, it would continue with other videos. When I got home four hours later, they were still watching Tabernacle Choir videos. They hadn’t stopped the entire time I was gone. They were both happy.

Since then I have been preparing something for them to watch at least once a week, sometimes more. Yesterday was one of those days. I selected a Bill Moyers documentary about the hymn “Amazing Grace.” It was about an hour and twenty minutes. As I have done before, I told the sitter that she could turn off the TV after the program was over or let it roll over to other videos. When I got home, they were both still watching the videos. “Amazing Grace” was over long before. They were now watching musical flash mobs. This is something I hadn’t thought about. If I had, I would have probably searched for them. Instead, they had simply come up according to the algorithm used by YouTube.

Mary told me that Kate rested a couple of times during the videos but kept coming back. I suspect that was a result of her liking some more than others. The important thing is that I have found a source of amusement for Kate apart from her iPad. The bonus is that it also helps her pass the time while I am gone. At the moment I am not planning to have a video every time the sitter comes, but once or twice a week might work well.

Telling the Truth (or Not)

Telling the truth is among our most universal moral/ethical values. Parents teach their children to be truthful very early in life. In addition to the family, our social institutions (religion, education, economy, and politics) support the truth in one way or another although we usually think of the family and religion as having the greatest role to play.

Despite this kind of cultural and social support for the truth, we all know that lying is quite common. We also know that it may not always be best to tell the truth. In everyday life we are often untruthful because we want to protect someone. We see that most easily when a child scribbles a picture and gives it to her mother on her birthday. We expect the mother to say, “Thank you. It’s beautiful.” Even when it isn’t beautiful at all.

With this in mind, it would not be a surprise to learn that caregivers face many situations in which they make a decision not to be truthful with their loved ones. We do that in those moments when we “live in their world,” and it’s very similar to my example of the child’s gift to her mother. Several months ago, I had one of those with Kate when we arrived home, and she thought we were revisiting either a house that we had lived in years ago or the one in which she had grown up. It was such a surreal experience I was never clear. I do know that I made a conscious decision to go along with her and not destroy what was such a beautiful emotional experience for her.

Late yesterday after the sitter left, she had a similar, though less intense, experience. I didn’t immediately recognize it because it began with something that is now so normal. She got ready for us to leave for dinner. She was carrying her house slippers, a tube of toothpaste, and her toothbrush. As we walked through the family room, she said, “Don’t you like this room?” I told her I did, and we stopped to look around the room while she commented on things she liked. I still didn’t think much of what was happening. I am accustomed to this. Once we were in the car, she put her right hand in one of the slippers as though it were a glove. Then she started to put the other slipper on the other hand when she ran into a problem. That slipper held the toothpaste and toothbrush. She decided not to wear either of them and put them in a side pocket in the door.

As we drove out of the driveway, she talked about the neighborhood and how much she liked it. Then she surprised me by saying, “I’m glad we don’t live here anymore.” I could easily have said, “But we do still live here.” I didn’t. I said, “But it’s a nice area.” Then she said, “Yes, but it’s such a big city.” I didn’t say anything else, nor did she. As we had gone a little farther, she commented on all the lights. That is something she usually talks about in a positive way. It was beginning to get dark and rush hour. This time she was bothered by all the lights from the cars.

This is restaurant week, and the restaurant was quite busy. It was noisier than we would have liked, but we saw several people we know. There was a group of six or eight who are members of our church choir including the wife of our former choir director. She was the first to arrive and came to our table and chatted for a few minutes. In a little while, a couple we know from the opera nights at Casa Bella arrived and stopped by the table to say hello. Finally, we saw someone I used to see at the Y. I was a little surprised that Kate did not respond with more recognition of these people, but I think she may have been distracted by all the activity and the noise level.

It wasn’t until we had finished our dinner and were about to leave that she said, “Where are we going from here?” I answered automatically, and truthfully, “We’re going home.” She said, “Oh, we’re that close?” I told her we were just about ten minutes away. In a moment, she said, “I’m glad we don’t live here anymore. It’s too busy. I like living in a smaller place.” I didn’t say anything. I did begin to suspect that her bringing the slippers, toothpaste, and toothbrush was rooted in her belief that we were leaving our “old” house and woudn’t be back.

I wondered how she would respond when we got back to the house. She didn’t say anything about the house or the neighborhood or being glad we didn’t live here anymore. In fact, it almost appeared that she didn’t remember the house at all. When we walked out of the family room toward our bedroom, she pointed down the hallway to her right and said, “What’s there?” I told her that was a bathroom, and she decided to use it.

In a few minutes, I saw her start to close the two doors leading to the family room and told her it was all right to leave them open. Later, when I went to get her night gown, I noticed that she had closed the doors to the other bedrooms. I don’t know what prompts this, but it is not unusual.

Yesterday’s experience of playing along with Kate was an easy one. I never felt I should be truthful and point out that we were currently living in the house she thought was a former house. Neither did I feel any necessity to correct her when she thought we now live in another town. Some situations require more thought.

Several of those occurred a few months ago when she had several anxiety attacks and didn’t know where she was or who she is. Twice when she said, she didn’t know what was happening to her, I reminded her that she has Alzheimer’s. The first time she seemed to be a bit relieved. She said she had forgotten she has it. She accepted this very naturally. Of course, she forgot it. The second time it didn’t seem to mean anything to her, and I chose not go any further. I wouldn’t want her to think about the future and what she will experience. My only reason for telling her before was to relieve her anxiety about what was causing her memory loss. Although the truth didn’t cause a problem in those instances, I need to think of a less truthful but satisfying response.

There is one other situation that comes up much more frequently that I am beginning to wonder about. That involves the death of her parents. Up until now when we have talked about them, I have spoken about them in the past tense. Most of the time that is just fine. Sometimes, however, she is sad when she learns they are gone. That hasn’t been a problem so far, but I know that it could be sometime in the future. For that reason, I am becoming more sensitive when I talk about them. I can easily see my reaching a point when I always speak of them in the present tense.