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Light at the End of the Tunnel (The Cold, That Is)

Yesterday Kate got up around 7:30, went to the bathroom and back to bed. I was pleased when I noticed in the video cam that she was about to get out of bed at 9:00. I went to her and asked if she wanted to get up. She said she did. As usual, the first thing she asked was, “Where are my clothes?” I asked if she wanted to take a shower. She looked unsure. I told her I thought it would be a good idea. She asked where she could find the bathroom. She rarely remembers. I know that she finds one if I am not with her. She must walk around until she finds one.

I went to the kitchen after seeing that she got in the shower. It wasn’t long before I saw that she was out and getting into bed. It was still early, and I know that she likes to stay in bed after her shower so I let her stay there an hour or more. While she was resting, she had a coughing spell about ten minutes. She seemed to be getting along pretty well as she was dressing and on the way to lunch. I didn’t hear any signs of wheezing then or the rest of the day.

She also got along well while we were at the restaurant. She had her usual memory problems, but they seemed worse yesterday. It started with one of the pictures of Frank Sinatra on the restaurant walls. Over and over she asked his name, sometimes within seconds. It is virtually impossible for her to retain information. We had chatted for about twenty minutes when she said, “What is my name?” She followed that with “What is your name?” After I told her, I asked, “Do you think we’re connected?” She said, “Are we married?” This time she didn’t seem skeptical the way she usually does and didn’t say anything.

When we got home, I decided to show her a TCU video on YouTube. Her brother Ken had let me know about it last week. She was fascinated to see the campus as well as some parts of Fort Worth. Like the music videos, the one we watched was followed by many others that were similar. She was well entertained and never worked on her iPad that was in the chair beside her.

After forty-five minutes to an hour, she took a break. While she was in the bathroom, I put in a DVD of her father’s family movies from the mid-1930s to the early-1940s. She was enthralled and whimpered as she watched. We were watching on the TV in our bedroom. Almost an hour later, she got up and walked over to me. She was very teary. She said, “Would you lie down with me?” When we got on the bed, she said, “I love my family. <pause>  My aunts and uncles. They’re all gone now.” I asked if she wished I hadn’t shown the video. She said, “Oh, no. I am glad you did. It just makes me sad. I said, “You must be glad to know that we have this video to remind us of them.” She said she was. I wasn’t surprised. The family movies have always been treasured memories. Of course, for Kate and for the other relatives her age or slightly older, they aren’t memories because they were taken either before they were born or when they were quite young.

While we were talking, we got a call from our daughter Jesse. We had a nice conversation catching up on her family. Kate greeted her when she called and said goodbye when we hung up. She was glad Jesse had called, but she did not participate in our conversation.

We took a break to get a bite to eat before the Super Bowl. When we got home, she waited for me to lead her to the back of the house. I said, “Would you like me to lead the way?” She said, “I could do it, but I would feel better if you did.”

She worked on her iPad for a while. Then she was tired and went to bed. I helped her get undressed and in her night clothes. She seemed especially confused. I had to tell her what to do every step of the way.

She went to bed around 8:30. I continued watching the Super Bowl until it was over around 10:00. When I got in bed, I thought she was sleeping soundly. Then I heard her whimpering. Periodically, she was shaking. I asked what was wrong. She said, “I don’t know.” I asked if she were afraid of something. She said she wasn’t. I asked her what I could do to help. She said, “Just stay with me.” That’s what I did. I gently stroked her back and talked softly about the good things we have experienced during our marriage. It wasn’t long before she was asleep, and so was I.

As I look back on the day, I don’t think there was anything she did that she hasn’t done before. Nonetheless, she seemed more like someone with dementia than she has in the past. During the afternoon, I received a phone call from a friend about our going with them to a concert in Asheville the last of May. I told him I appreciated the invitation, but I was very unsure because of Kate’s recent decline. At this point, I don’t know what to expect by then.

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Making Progress?

Kate was getting up on her own about 11:45 yesterday when I saw her on the video cam. I went to the bedroom and asked her how she was feeling. She looked puzzled and said, “Why do you ask?” I don’t think she thought she was sick. In fact, over the past nine days she has only recognized that she coughed and had to blow her nose and that, of course, only in the moment they happened. I had told her she had a cold, but she never remembered it. Day before yesterday, she definitely felt sick. That was when I heard her wheezing. I don’t believe she has had a conception of her being sick over a few days.

The good news is that I listened for her wheezing and didn’t hear anything. Then I asked her to take a deep breath and blow out through her mouth. She did that a couple of times. I still did not hear a wheeze. That made me feel a lot better. I didn’t want to see this advance to pneumonia. Of course, both of us have had the pneumonia shots, but we all know they don’t always work the way they are supposed to. Like many others, we had a light case of the flu last year even though we had the flu shot.

In addition to not wheezing, it was a good while before she coughed after getting up. Excluding her Alzheimer’s symptoms, she also seemed more normal. When I walked in she said, “Are you my daddy?” When I told her I was her husband, she couldn’t believe it. I decided it was best not to go into an explanation and suggested she take a shower. She asked where the bathroom was, and I took her. She took a long shower, dried off, and got back in bed.

After I got her up and helped her dress, she seemed fine. She wasn’t coughing. I decided to go out to lunch When I backed he car out of the garage, she coughed several times. Then I had doubts about going out. When she stopped, I decided to go ahead. Except for a couple of briefs coughs, she was fine at lunch.

Several times she asked where we were. Of course, she has been doing that for a long time. Now there is a new twist. When I tell her we are in Knoxville, Tennessee, she often asks, “What is Knoxville?” Then I explain that it is a city and that Tennessee is the state. It is only in the past few months that she has commonly asked this. It is another sign of the subtle changes that are constantly taking place. Mixed with her questions about our location, she also thought at times we were in Fort Worth. I suspected this on the way to lunch. She commented on remembering many things she saw along the way.

We came back home after lunch. When I got out of the car, she asked if she could help bring things in. I am sure she thought we were traveling and needed to unload the car. I told her I could get everything. Let me digress a moment.

(This is something new that I have mentioned before. Over the course of her Alzheimer’s, she has rarely asked if she could help me. In the past few weeks, she has asked if she could help me fold and put up the laundry, unload the dishwasher, and now unload the car. I also mentioned in a previous post that the other night she asked if there were anything she could do to help me. In that case, she was worried that I was carrying a heavy load and wanted to ease my burden. These may seem like very little things, but they are totally different from the norm the past ten years or so. She was letting me do things even before her diagnosis.)

She said she was tired and wanted to rest but brushed her teeth first. After brushing, she walked back to me in the kitchen. I could tell by the look on her face that she wanted to know what she could do next. That is a very common thing for her to do. I gave her the iPad and said she could sit in the family room and work puzzles, and I would be there in a minute. I went back to my computer. When I had finished what I was doing, she was walking out of the family room to the back of the house. I don’t believe she even sat down to work her puzzles. Shortly, I went back to one of the guest rooms where she was resting on the bed. She has definitely been more tired since catching her cold.

About two hours later, she came into the kitchen with her iPad under her arm and stood beside me. She didn’t say anything. This, too, is a very common experience. I knew that meant she wanted to get out of the house. We went to Barnes & Noble. We had been there fifteen minutes when Kate looked up at me and said, “I forgot they had this here.” I said, “What do you mean?” She pointed to her iPad and the puzzle she was working. By now I shouldn’t be surprised that she doesn’t recognize her own iPad, but I am. This was one of those times. I wonder what could have made her think it belonged to Barnes & Noble. This is similar to what frequently happens in restaurants. As we are about to leave, she often asks if the cup or glass is hers or belongs to the restaurant. It always makes me think about how she perceives the world. I simply can’t imagine how confusing for her it must be not to know where she is, what is hers, where we are going, and what she is supposed to do. There is so much I don’t understand. No wonder she gets confused.

We had another beautiful end to our day. I had chosen a YouTube video of choral music. In its cycle from one video to the next, we landed on a series of videos by a church choir. I didn’t see any identifiers as to what church or where it is located. I will have to check today. I do know that Kate was taken with everything they sang, and almost all their music was unfamiliar to either of us. She didn’t want me to stop the videos to go to bed. Finally, I turned them off and help her get ready to bed. I had to assure her that this was not a live concert we were watching, and we could pick where we left off tonight.

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Day 9: The Cold Becomes Something More

I was interested in getting an idea of how Kate was doing yesterday morning, so I tried to get her up for lunch. That would have given us time to be together as she was getting ready as well as at lunch. This was one of the many occasions when she just wanted to remain in bed. The first time I walked into the bedroom, she was lying in bed awake. I took a glass of water and asked if she would like some. She said, “In a minute.” She looked mildly confused or disturbed. When I asked if something were wrong, she held her hand up to let me know she didn’t want to talk about it. I sat down on the bed and said, “It looks like something is bothering you. Could you tell me about it?” She shook her head no. Then I asked if she would like me to let her rest a little longer. She did. I told her I would be in the kitchen if she needed anything.

About twenty minutes later, I went back to let her know that I would be going to the Y a little later and wondered if she would like to go to lunch with me or let the sitter help her dress and take her. She opted to stay in bed and let Mary handle things. Then I noticed she was wheezing slightly. It wasn’t much, but I took that as a warning sign and called her doctor. Unfortunately, they had just closed for lunch, but her doctor’s nurse called me back as soon as she returned to the office. She advised us to go to an urgent care center to have her checked.

We went to a nearby office that has quite a few locations in various parts of town. We have been to one of their other offices in the past. I like the fact that you can schedule appointments online and wait at home until they text you thirty minutes before your appointment. That doesn’t mean that you don’t wait in the waiting room, but the wait is significantly shorter. I also like that they have a TV that lists the order in which patients will be called. Both times we have used this system, Kate has been the next person called. That happened again yesterday.

This was a time I could have used my cards indicating that she has Alzheimer’s, but I forgot. Instead, I discretely told the woman at the front desk and the nurse who led us to the examination room. That was good because Kate had trouble following very simple directions like stepping on the scale to be weighed and where to sit. I knew that when we got to the x-ray room, she was going to have a problem. It worked out fine, but she did get confused and spoke fairly strongly (for her) to the nurse to be clearer about what she was supposed to do.

Her vitals were just fine. Her blood pressure (139/80) was higher than it used to be, but her temperature was 98, and here blood work showed no sign of an infection. She had lost five pounds since her last doctor’s appointment in the fall. Of course, scales can vary, but I couldn’t help thinking that might be a result of eating fewer blueberry muffins. That doesn’t happen nearly as much now that we are not at Panera every day. The x-ray, however, did show congestion in the bronchioles. Although it appears that she does not have a bacterial infection, the doctor put her on an antibiotic and advised us to contact her doctor on Monday.

She slept well through the night and had only one coughing spell that occurred shortly after going to bed. She was up at 6:30 to go to the bathroom. I took the opportunity to give her the next antibiotic and Mucinex. I didn’t detect any wheezing; however, a few minutes ago, I went to her beside and listened carefully. She was wheezing very slightly, less than she was yesterday. I hope we will see some improvement today.

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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.

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Signs of a Cold or Alzheimer’s?

Kate’s cold and accompanying cough continued yesterday. I believe it was somewhat, but not dramatically, improved. It’s been an interesting cold in that her symptoms have been pretty even over the course of the past week. She hasn’t had a fever, and she goes long periods (an hour or two or more) without coughing. She doesn’t go quite as long without blowing her nose, but that also comes and goes.

Her overall behavior, however, suggests she has not been herself. She has been more confused and dependent. She has had greater difficulty working her jigsaw puzzles. She has actually had moments when she didn’t know what she should do with pieces once they were scattered across the screen of her iPad. I don’t mean she didn’t know the exact place to put them; she didn’t know what to do at all. She has also had several hallucinatory experiences. Two of those were a week ago, and one occurred last night.

We stopped at a traffic light on our way home from dinner, and she said, “Is there anything I can do to help you?” This came out of the blue for me. I didn’t know what she might have been thinking and said, “What made you ask that?” She said, “You’ve been going through so much.” I was still confused but decided not to question her. I simply assured her that I was getting along well. I told her that she had always been my support, that she should just continue that. She appeared relieved.

As usual, she worked on her iPad after we got home from dinner. She couldn’t remember how to start, that is, to open the puzzle app. This was not the first time. I showed her as I have done before. Once it was open, I showed her the various options she could choose. I walked away, and she immediately ran into a problem. She hit an arrow at the top left of the screen that took her to the store instead of selecting one of the puzzle options that filled the rest of the screen. That, too, was not the first time, but it is becoming more frequent. When she went back to the puzzles, she worked them for about an hour. Our son called as she was getting started. She said hello with her usual enthusiasm, but then quickly returned to her puzzles. While I was on the phone, she asked me for help several times. Her attention was clearly on the puzzles and not the phone call from Kevin.

When I got off the phone, she wanted to get ready for bed. First, she walked over to me and expressed her concern about me. She made reference to “that man.” I asked if she meant Kevin. She didn’t, but she was unable to tell me who “that man” is. I did grasp that she was again worried about me and the load I am carrying. One might think she was talking about my role as a caregiver, but it was not. I got the distinct impression that it had something to do with my work or volunteer activities. Interestingly, they are minimal these days; however, I am sure hallucinatory experiences often relate to distant memories.

She was tired and went to bed a little earlier than usual. She had done the same the night before. I think this could be related to her cold. After thirty minutes or so, she appeared to be asleep. I joined her thirty minutes later. When I did, I discovered that she was awake and whimpering. I asked her what was wrong. She didn’t (couldn’t?) explain but said, “The babies.” I told her I didn’t understand but wanted to help her. She went on to say, “I do want a baby, maybe two.” I mentioned our having had two babies who were now grown up. She was startled, not about having babies, but that she and I had babies. I told her I was her husband. She strongly denied it. I knew I needed to go in a different direction.

This was another time I felt explanations were irrelevant; she needed comfort. I told her just that and said, “I love you dearly, and I want to comfort you.” She said, “I know you do. I can tell by your voice that you’re not just saying that.” That began what may have been close to an hour of conversation during which she talked, and I gave supportive responses. I never fully understood what it was that prompted her worry. At one point, I asked her if she were afraid. She said she was. I was never able to discover why.

What I do know is that she thought she was young and unmarried. A couple of times she said, “I can have a child. I have one now.” One of those times she put both hands on her stomach as she said this. That may have meant she was carrying a child now. She also responded to me as if she knew I were her husband. I told her I loved her, and she said she loved me. Despite this, I don’t believe she ever recognized that I am her husband. I was just someone she felt very close to. She was very comfortable talking with me. Finally, she relaxed, and we both fell asleep.

It was a week ago yesterday afternoon that I noticed the first sign that she was getting sick. She coughed a few times, and it didn’t sound like a normal clearing of her throat. The next morning it was obvious she had a cold. It was that afternoon that she had an hallucination that involved our working in some kind of education project in another country. At the time I wondered if that could have been a side effect of the Robitussin DM or Zyrtec, the cold itself, or her Alzheimer’s.

One thing is clear. She has been noticeably different this week. I have eliminated the Robitussin and Zyrtec. I am left with the possibility of the cold itself or Alzheimer’s. At the moment, I believe Alzheimer’s is the primary cause and that the cold may have aggravated the situation. Time will tell.

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A Late Start, But A Great Finish

As I had expected, Kate didn’t want to get up yesterday when I left her to attend my luncheon. I had prepared the sitter that she might want to sleep much longer. I even mentioned that if they were just getting to Panera for Kate’s lunch around the time I was to return home, I would meet them there. What I didn’t expect was to find that Kate was still sleeping soundly when I got to the house a few minutes before 2:00. The sitter told me she tried to get her up three times. Each time Kate said she wasn’t ready to get up.

After the sitter left, I went to the bedroom and sat down on the side of the bed where Kate was sleeping. She opened her eyes and smiled. That was a good sign. I asked if she were ready for lunch. She said, “What do you want me to do?” I told I thought she should get dressed and let me take her to lunch. She got up without any coaxing. It was a little after 3:00 when we left. I decided it was too late for lunch and went to Barnes & Noble where she got a muffin.

We arrived there close to 3:30. After sitting down at a table, Kate asked me at least four times in a short period of time where we were. She had done the same thing a couple of times in the car on the way there. It wasn’t long before she said, “Don’t play games. Are you going to tell me where we are or not?” Of all the times she has asked something over and over, she’s never said that before. That didn’t end it, of course. Within a few minutes she asked again.

Knowing that the muffin wouldn’t hold her long, I decided to leave for dinner before 5:00. This would not have been the first time we have eaten so early. (I remember growing up in West Palm Beach. We used to joke about all the old folks who came down from the North to spend the winter. There were lots of restaurants who catered to them and had early bird specials that drew large crowds. Now I understand a little better why they ate so early.) I think it makes sense for us to get back home early. Kate seems to go to bed earlier when we do that. I like to think that it keeps her from sleeping so late in the morning, but I’m not sure that works at all.

Our day ended very much like the day before. I watched the news while Kate worked on her iPad. Once again, she was struggling to understand how to work her puzzles. I fear that she may lose this ability far sooner than I care to believe. When I saw her put down her iPad in frustration, I walked over to her. She said she was tired and thought she would get ready for bed. I got her night clothes for her and went back to what is becoming our best friend, YouTube. I began with a video of Renee Fleming singing an aria from the opera Norma. Neither of us has seen the opera. Prior to a few weeks ago, I had never heard the aria. I discovered it while browsing YouTube for something new to watch. It is a beautiful aria, and Kate was mesmerized. She didn’t get out of her chair until it was time for bed. We watched a pot pourri of music videos before then. After Renee Fleming, we watched a beautiful choral rendition of Samuel Barber’s “Adagio.” We followed that with music by The Piano Guys, The Tabernacle Choir, and an orchestral flash mob playing “Waltz of the Flowers” in a shopping center in Israel. This brought back memories of my childhood. I loved it the first time I heard it in the sixth or seventh grade. I can’t tell you how engaged Kate was during all of them. She was more emotional than usual, at times bordering on tears. The last video was The Tabernacle Choir singing “Come Thou Fount of Every Blessing.” It had quite an impact on Kate. Ten minutes afterward she still shed a few tears.

Because music has been so important to me, I have taken great pleasure in Kate’s enjoyment. It’s not that she hasn’t always liked music. It has played a big role in our marriage. Alzheimer’s seems to have enhanced both the impact of music and the breadth of types of music she enjoys. She doesn’t like everything. She is actually bothered by most of the music we hear in restaurants, but that leaves us with a broad range of music that we both like. With her memory loss, conversation is difficult. But it is a real joy to sit with her in our own house listening to music together and being as moved as we would have been in the grandest concert hall. These are moments I will cherish in the days ahead.

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Kate’s Cold and Her Pre-Operative Appointment for Cataract Surgery

I had hoped Kate’s cold would have improved significantly yesterday, but it didn’t. I am glad that it didn’t get worse. She had a good night, no coughing until the morning. Even that didn’t last long. That has been the pattern since her cold began five days ago; however, when she coughs, it is quite loud. Because of that I called the agency that provides our sitters. I arranged for someone come to the house this morning. I am attending a luncheon and need to be there at 11:00. I had planned to take Kate with me. Under the circumstances, I felt it was best that she stay at home. Our regular sitters were already committed to other assignments. This will be the first time that I have had a new sitter without having interviewed her before hand and letting Kate meet her. She will be here at 10:15. I will give her instructions and introduce her to Kate before leaving. If this is like most days, Kate is likely to be asleep when she arrives and continue to sleep after I leave. Kate needs help dressing now, so I will be eager to see how well she accepts the sitter’s help. I am already a bit uneasy about leaving her. The good thing is that we may be approaching the time when I need to add another sitter. It will be good to have someone else who might be able to fill in from time to time.

Speaking of sitters, yesterday was my day for Rotary. Kate was still sleeping when Valorie arrived. She walked into the bedroom with me when I told Kate goodbye and that Valorie was here to help her get dressed. She said, “Thank you.” Then she closed her eyes, and I left. Kate had a 3:40 pre-operative appointment with her ophthalmologist in advance of her cataract surgery scheduled for February 12, so I asked Valorie to take her to the office where I met them. Unfortunately, it wasn’t a time when I could talk to her privately to see how things had gone after I left for Rotary.

I was waiting for them in the lobby when they arrived. I stood up and walked over to Kate. She didn’t recognize me from a distance. When she got closer, she looked somewhat puzzled and said, “What’s your name?” I said, “Richard” and stopped to see if she said the rest of my name, “Lee Creighton.” She does that sometimes, but not this time.

Valorie left, and we took our seats in a separate waiting area for the pre-op patients. There were several other patients waiting and Kate waved and said, “Hello-oh” to them before we sat down. She didn’t do it in a natural way. It was more like someone with some kind of mental problem. I may have imagined it, but I thought several of the people gave her strange looks. No one returned her greeting.

We did not see the ophthalmologist on this visit. First, we saw her assistant who explained what we would need to do in preparation for the surgery and gave us prescriptions for three different types of drops we are to use several days before the surgery. Kate was unusually active in our meeting. I think she felt too much of the conversation was between the assistant and me. At one point, she said something that indicated she was the one to get the surgery and would need to know what to do. I was amazed at how well she understood that. She also stopped the technician a few times to ask her to tell her what certain words meant and re-explain what she had just said. It was an interesting combination of wanting to be on top of the situation but not being able to. It reminded me of her continual attempts to remember names, where she lives, or to understand the news she hears on the radio of TV. She wants to know but can’t remember.

When we finished, one of the technicians took us to a room where they performed two different scans of her eyes so that they can properly size the implant. Having tried to give various instructions to Kate since she got her cold, I took particular note of the challenges the technician had with her. The first issue was getting her to sit on the stool in front of the scanner. I suspect there were two issues. First, was her eyesight. As with many people with dementia, she often overlooks things that are right in front of her. Second, this was a short, round stool. It didn’t look like a typical chair. After she was seated, the technician asked her to “put your chin right here.” It took a little more coaching for Kate to know where to put her chin. The technician was very sensitive to Kate’s situation and treated her just the way I would have wanted.

The scans didn’t take long. We were soon on our way. As we walked out the door, Kate said, “I have no idea where I am.” I told her we were in Knoxville, Tennessee, where we live and were leaving the eye doctor’s office.” Although I had told her about the cataract surgery and the appointment, I know she can’t remember. Thus, the entire process must have seemed strange. I can’t imagine what it was like for her.

We went directly to dinner from the ophthalmologist’s office. When we got home, Kate started to work on her iPad while I watched the news. It wasn’t long before she encountered problems with her puzzles. She said, “What can I do?” I said, “I have an idea. Why don’t I put on some music on the TV while you get ready for bed?” She liked the idea. I selected several brief choral videos and then an entire concert by the Wartburg College Choir. She enjoyed it while lying in bed. At the end of the concert, I turned off the TV, and she gradually went to sleep.

Several times during the night, she coughed but not for long. She is still sleeping. I don’t intend to wake her before the new sitter arrives. I will introduce the two of them and then let Kate choose whether to get up or stay in bed. I would be very surprised if she wants to get up.

I feel like a parent leaving his child with a new sitter. I will be occupied while I am gone, but I am not going to be comfortable until I return home and find that everything went well.

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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.

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Melancholy Day

Yesterday was a different kind of day. The past couple of days I’ve had wonderful connections with friends and family that go back to my college days at TCU. In one case it went back to the fourth grade. At this stage of life hearing from people you have known over a lifetime is especially precious; however, there were aspects of each of them that gave me something of a melancholy feeling yesterday.

It began the day before when I tried to reach my childhood friend and neighbor and discovered she is in the last stages of dementia and unable to communicate with me. Then yesterday morning I received an email from one of Kate’s cousins. She had written a very touching poem as a tribute to her husband who was diagnosed with dementia and died in 2013. Yesterday was his birthday. It was a beautiful expression of her love for him. A little later in the morning, I read an email attachment from a college friend and widow of one of my college roommates who had dementia. It was a tender story of their lives together. My former roommate took up poetry in a serious way in his later years. She included a poem he had written to her on an anniversary in 1996. I am sure it meant a lot to her at the time and even more so now.

After Kate and I returned from lunch, I was surprised to see a package on our front porch. It was from another TCU roommate. We had been out of touch until the past six to eight months. He sent some autobiographical writings that he had prepared for his children. He was an outstanding singer in college, and we had sung in two different choral groups together, but I hadn’t kept up with his career at all. I also learned that he had lost his wife to cancer. Reading about his experiences summoned up feelings I often have at memorial services. It’s a feeling of “knowing” people but not really knowing much about them. I am glad to have connected with him now but wish that I had been in touch with him before.

Add Kate’s situation to this mix of connections. Her Alzheimer’s continues to take her in the only direction it can, and now she has a cold. My feelings for her are the same as those a parent has for a sick child. After lunch, we came back to the house where we spent the rest of the afternoon in our family room. Kate rested on the sofa while I went through the writings of my former roommate. As I reflected on my friends’ memories, I looked over at Kate. Despite her cold, she was lying there peacefully with few of her memories left and no sense of the future or just how precious our moments are right now. I felt sad for her. I don’t like to see her facing the symptoms of a cold much less those that accompany her Alzheimer’s. Like my friends who lost their spouses I am grateful for memories of the past, but, unlike them, Kate and I still have time to make new ones. They will be quickly lost for her, but I will remember.

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Update on Kate’s Cold

Kate’s cold was a little worse yesterday. The good news is that she was in a good mood, and her cough occurred only periodically. She had one loud cough after we sat down for lunch but didn’t cough again until much later in the day. Even then her coughing was very infrequent.

She slept late but no later than on any other day. Our server at lunch had just about given up on us when we arrived close to 1:00. The most obvious sign that she is sick is that she is wiping more saliva and phlegm from her mouth than usual. I wish I could say all of it goes into the paper towels and napkins she uses. The truth is that she wipes a lot on her clothes. This happens all the time, but I am more sensitive to it now that she is sick. I want to avoid getting whatever she has, but it is going to be hard to protect myself. I washed my hands a lot yesterday and used hand sanitizer. I am also trying to avoid coming in contact with her clothes and hands, but that is tough.

She rested a couple of hours after lunch but didn’t appear to go to sleep. She also went to bed somewhat earlier than usual and without any prompting from me. She wasn’t asleep when I got in bed. That is beginning to be common.

She slept well until 3:00 this morning. That’s when she started coughing. It must have gone on close to thirty minutes though it seemed longer to me. After breakfast, I glanced at the video cam and saw that she was getting out of bed and looked confused as to where to go. I went back to the bedroom. She was looking for the bathroom. She used the toilet and brushed her teeth. In the process of brushing, she got her night gown wet. I got her another and put her back in bed. I suspect she will sleep until at least 10:30, perhaps later.

I had planned for us to attend the regional Metropolitan Opera auditions at a local college today. We have enjoyed going the past three or four years. They begin at 10:00, but I didn’t even think of trying to get there that early. I thought we would catch the last couple of hours this afternoon. Now I am doubtful about that. I don’t want to risk Kate’s coughing as well as passing along her cold to anyone else. That’s a shame because it is something she has enjoyed immensely, and it’s hard to imagine that we will be able to attend next year.

Yesterday I was reminded of how many lives are affected by dementia when I tried to reach a childhood friend and neighbor. I discovered she is now in memory care and unable to communicate. I am always saddened by news like that.

I am also thinking about a family member whose birthday is today. He was the husband of one of Kate’s favorite cousins. He is someone else who lived with dementia. We lost him five years ago. I have fond memories of conversations with him at Franklin family gatherings. We were both newcomers to the family and because of that connected in a special way.