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A Day of Surprises

After the experiences of the past two days, I was hopeful that yesterday would be better. Before telling you about it, I’ll “cut to the chase” and let you know that it was better in that she was able to get up and out during the day. I don’t mean to say that Kate failed to show any of her recent symptoms. In fact, it was a day of multiple surprises.

It started early. I awoke at 4:15 to go to the bathroom. After I returned to bed, Kate was cold and needed help getting the covers over her. I got up and took care of it. She chatted a little while. I must have been awake thirty to forty-five minutes. At 6:00, she wanted to go to the bathroom. Normally, I would have gotten up after getting her to bed again, but I decided to rest a little longer. I slept until 7:15.

About 8:30, I noticed on the video cam that she was getting up. I got to her and found that she seemed groggy but otherwise quite normal. She responded to me as though he knew me as her husband, but she wanted to go home. I helped her to the bathroom. She was a bit unsteady and very insecure, actually frightened that she might fall and wanted to hold my hand. Once in the bathroom, she said, “Sometimes I wonder what’s wrong with me.” I said, “You think something’s wrong?” She laughed and said, “Well, I think everybody wonders that.” I was glad that she said this in a way that convey no sense of concern or anxiety. She was simply being candid and then making light of it.

After she was dressed, she asked if she could lie down again. I suggested we go to the family room so that she could use the recliner. She has increasing difficulty getting up from a lying or sitting position. The recliner makes that easy although it scares her. I thought she might go back to sleep for a while and did not want to experience yesterday’s problem. I went to the kitchen and got her a breakfast bar. Most of the time when she rests I play music that is especially relaxing. I was glad that I did something different. I played albums of My Fair Lady, Oklahoma, and Sound of Music. She remained awake through all of it.

About 45 minutes before I wanted to leave for lunch, I asked if she would like to look at one of her photo books. She did, and we spent only a few minutes before she said she wanted to lie down on the sofa and rest. I got her up after thirty or forty minutes without a problem. She was ready to eat.

She was very talkative in the car and at lunch. She was so talkative that I didn’t play any music going to or coming back from lunch. I didn’t always understand what she was talking about, but much of it involved her feelings about our marriage.

She rested, but did not sleep, for almost three hours in the afternoon. I played music, but she was especially taken with the house, especially the family room where we were seated and the trees outside. This was the first time I recall her expressing enthusiasm for the branches of trees without their leaves that make up most of the trees on our neighbor’s property behind our house. She asked me a number of questions that made it clear that she had no idea it was our house. I didn’t correct her.

Something unusual happened late in the afternoon. I had asked if she would like me to read to her. She wasn’t enthusiastic, but I suggested I read The Velveteen Rabbit and told her I would stop if she wasn’t interested. I read for about five minutes. She wasn’t paying attention. I asked if she wanted me to stop. She did and said she wanted to talk with me about something serious. The expression on her face also conveyed an even more serious issue was confronting her. It turns out that she was very concerned about her mother who died fourteen years ago. Kate wanted me to know that she was thinking of moving to Fort Worth to take care of her. Although everything she said was rooted in a delusion, I was astounded by the rational way she approached the topic. She talked about her various options and why they wouldn’t work. She said her mother had many friends who could help but outlined reasons that would not work. Then she talked about paid caregivers and suggested they would never deliver the kind of care she could provide. She also talked about her mother’s condition and noted that sometimes she was rather “clear-headed” (I don’t remember the exact words she used.) and other times she wasn’t. The mentioned the nature of the mother-daughter relationship that would enable her to provide better care than anyone else.

She talked continuously for a good thirty to forty-five minutes. Most of that time she did not realize she was talking to me. I got the impression she thought I was in another room and would be back soon. Several times she mentioned that she would need to talk with me about a possible move to Texas. I was eager for us to leave for dinner so that we could get back for the Super Bowl, but she kept on talking.

(My interest in watching the Super Bowl is another surprise of the day. Although I have caught a few portions of a couple of games this season, I haven’t watched a pro game all season. I am, however, aware of the success of the Chiefs’ quarterback, Mahomes, and have been impressed that a man as young as he is could attain such stature so quickly. I think, however, that the real reason I was interested was that I just wanted to relax and amuse myself for a short time.)

I was finally able to stop her by suggesting we talk about this over dinner. She accepted, and we went to Panera. It was close, and I figured we could get back in time for the game. During the short car ride to the restaurant and at the table before we got our food, she continued to talk about somebody she thought had been at the house and was going to meet us at Panera. Her attention was diverted when we got our food, and I didn’t hear anything more about the issue.

Another problem developed as we left the restaurant. Although she had been getting along pretty well, she was still a little unsteady on her feet. She wanted to take her drink with her. As we walked out to the parking lot, we had to step down from a curb. Normally, I use two hands to help her, but I had her drink in one hand. As she stepped down her weight shifted, and she lost her balance and fell. Fortunately, it was a gentle fall. The problem was getting her up. At first, I tried to lift her from the front. That failed miserably. Then I got behind her and put one arm under her right arm and the other under her left arm and lifted. Success.

The day was not over yet. Once we were home, it looked like things were moving smoothly. She wanted to get ready for bed. I wanted to watch the game. I got her to the bathroom and had her toothbrush ready for her. After that, we ran into a problem. She forgot to brush her teeth and got in bed. She hadn’t taken her medicine or put on her nightgown. That was a time when she wanted to work on her hair. I suggested that she get her teeth brushed and put on her nightgown. Taking her daily medications is becoming more difficult. She often drops them. Sometimes she puts them in her mouth but doesn’t swallow them. I have to monitor this carefully and give her one at a time. Something I did or said caused her to be angry with me. She told me to shut up, and I did something I had never done before. I very gently said, “I love you, and I know you didn’t mean to say that. We’re both frustrated, but we need to respect each other.” She followed that by speaking back to me in the same tone of voice and agreed that we do need to respect each other. She went on to say that sometimes it seems like I am trying to control everything she does. I was somewhat startled by the rational, honest and loving way she responded. Getting her ready and into bed was easy after that.

It was halftime at the game. I took my shower and left the game on. When I came back the second half was about to begin. I sat down to watch. A little later, Kate said something like, “Wow, this is really something.” I thought she must be dreaming. When I looked, I saw that she was sitting with her head elevated and looking at the TV. I asked if she was enjoying the game. She enthusiastically said yes. I know she had no idea who was playing nor could she follow what was happening. I don’t know why she seemed so engaged with the game. Could it have been an effort to connect with me in a positive way after the tiff we had earlier? Was she trying somehow to relate to me? I don’t know. Her response to the game was certainly unusual.

That wasn’t the last of the day’s surprises. After the game, I got in bed and moved close to Kate. She was still awake and seemed concerned. I said, “What’s wrong?” She said, “I don’t know. I’m scared.” I remained close to her and tried to comfort her. This had to have been one of those times she was disturbed about not knowing anything, but the only thing she said that would suggest that was asking who I was. I gave her my name and told her I wasn’t sure what was wrong but that I would always be with her and that the two of us together would be able to handle anything that comes up.

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The Rest of the Story

As I finished my last post, I was seated in a chair beside our bed where Kate was resting. That was around 11:30. After that, I tried several other times to get her up without success. It was puzzling because she seemed so normal except that she wouldn’t get up. She was receptive when I said I wanted to take her to lunch, but each time she said she would like to rest a little longer.

I was finally successful just before 1:30; however, she was very unstable on her feet. I told her I thought we should go to a nearby urgent care center, but she was adamant about not going. I was able to get her to the family room where I put her in her recliner. Then I decided to call Kate’s brother’s wife who is a retired pharmacist. She has a good medical background and has been a caregiver for her two parents. That turned out to have been the best thing I could do. She mentioned that the symptoms I had observed were common among people who have been without food or liquids for an extended period of time. I immediately remembered problems my dad experienced with low blood sugar. That sounded like a plausible cause of the problem.

After the call, I opened a can of Dr. Pepper and poured it into a cup for her. I also gave her two breakfast bars and let her continue to rest. It wasn’t long before she began to perk up, but I wasn’t sure until she got up a little later when we left for dinner. She was still a bit unstable and wanted to hold onto me, but she didn’t show any signs of weakness as she had earlier.

She had a good dinner and ate everything on her plate. We came home where I put on YouTube videos and played them over two hours before she got to bed. The videos kept her attention the whole time. It was very welcome experience after the morning and early afternoon. I felt a sense of relief when we were in bed.

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Highs and Lows Continue

I look forward to another day that I can call a “Good Day,” but right now it looks like our lives are a mixture of highs and lows. That is the story for yesterday. Kate was awake early and wanted to go to the bathroom. She was unusually unsteady and frightened. She held my hand tightly as we waked to the bathroom. At one point, she thought she was going to fall. After finishing in the bathroom, she went back to bed and wanted me to stay with her.

After an hour, I tried to get her up again, but she was too tired and seemed weak. I told her I wanted to take her to lunch before the sitter arrived, but she still didn’t want to get up. I decided to forego lunch with her and let her rest. I did, however, manage to get her up and dressed before Mary arrived. She was very uneasy about standing up and said, “I don’t feel good.” I asked if she were in pain or wanted to throw up. At first, she said she didn’t. Then she said she wanted to throw up. I brought her a pan. She couldn’t throw up. I think she must have picked up on my suggestion and didn’t know what I meant. We walked slowly from the bedroom into the family room. She seemed afraid and unsteady. She wanted to lie down. I took her to her recliner where she was when Mary arrived.

I met her at the door and explained what was going on. I also told her we had bananas and breakfast bars if Kate wanted something to eat. I also reminded her that I have gift cards for both Panera and Applebee’s should she want a meal. When Mary walked in, Kate seemed perfectly normal. I put the chair in its upright position and left. I thought she might be all right. When I returned, Kate was still sitting in the chair. I don’t think she had been asleep. All she had eaten was a banana.

After Mary left, Kate was eager to “go home.” I told her I would take her and that we could get a pizza on the way. Kate was still unsteady on her feet and almost lost her balance as we walked to the car. Everything seemed fine again at dinner. Again, I thought the problem was over; however, she was still unsteady and frightened when she walked.

Once we were home I decided not to watch the news and turn on YouTube for some music that Kate might enjoy. Kate watched for almost two full hours and enjoyed every minute. It was a great time for both of us. She was enthusiastic and would have watched longer if I hadn’t told her it was time for bed. That may have been the source of the next problem.

As we went through the nightly routine of going to the bathroom, brushing teeth and getting her night clothes on, she became irritated with me. She said, “You don’t know what it is like to have someone tell you what to do all the time.” I apologized. Then she did the same. As I walked her to the bed from the bathroom, she said she was all right and let go of my hand. Then she became unsteady and fell on the bed. No harm was done, but it scared both of us. I was up another thirty minutes before joining her in bed. When I got in, she was glad to see me. We ended on a high note.

That leads me to this morning. Once again, she was up early and wanted to go to the bathroom. She was as unsteady and frightened as she was yesterday. She also mentioned that she didn’t “feel good” but couldn’t identify anything that was wrong. Several times she said, “I don’t know what’s wrong with me. I’m not usually like this.” She asked where she was. I told her we were in Knoxville, and she said, “I knew that. I’m having to learn things that I already know.” I told her I was glad to help her with anything she wanted to know.

I suggested she take a shower. She didn’t protest at all. Her insecurity continued and she held a security bar the entire time while I bathed her. Several times she expressed her appreciation and said she wished she could do things for me.

She wanted to lie down again after drying off. Once she was in the bed, she said, “Sometimes I can do things and sometimes I can’t. That may be a sign that I am getting better.” She asked if I would stay with her. That’s where I’ve been for the past hour. I just asked her about lunch. She indicated that she would like to but not now. It’s still just 11:20. I plan to give another thirty or forty-five minutes before asking again. If it is like yesterday, it could be a long time.

I’m still trying to make sense out of what is happening. By best guess right now is that she may not be “sick.” Instead, it may be changes that are related to her Alzheimer’s. I did a Google search on balance among Alzheimer’s patients and found quite a few references to just what I witnessed yesterday and today. Unless I see clearer signs of an infection of some type, I will take this as another symptom that Kate is experiencing with her Alzheimer’s. She has also had more difficulty getting up from a seated position during the past couple of days. Her mobility problems could easily have as great an impact on our lives as her memory loss.

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Caregivers As Problem Solvers

I often talk about our having “good days,” but what is becoming more common is a mixture of problem-solving and moments of pleasure. That is what it has been like the past few days.

Kate was up early on Monday and in a good mood but confused. She wanted to take a shower. Afterwards, I started to help her get dressed, but she wanted to get back in bed before we finished. We had plenty of time before the sitter was scheduled to arrive at noon. I let her rest until an hour before then; however, she didn’t want to get up. It was not a repeat of Friday when she refused. She seemed tired, not depressed. I even asked if she were depressed. She said she wasn’t, and the way she spoke and smiled suggested she was telling the truth. I was able to encourage her, and she got up.

When Cindy arrived, Kate greeted her warmly with a big smile. I mentioned that Cindy was going to take her lunch. She wanted me to go to lunch with them. When I told her I was going to the Y and to a meeting after that, she frowned. It didn’t look as though she was seriously concerned but preferred that I be with her.

She was resting on the sofa when I returned. That is typical. After Cindy left, Kate and I sat together on the sofa while I read from a photo book of her mother’s family. She really enjoyed it. We went through part of the book for about forty-five minutes and then went to dinner.

After we returned home, she started to work on her iPad. Then she decided to get ready for bed. I turned on the news, and she appeared to watch with me for most of the hour before calling it a night.

Later as I was getting ready to shower, I noticed that she was awake. I walked over to the bed. She looked worried. I asked if she was all right. She said she was, but she wasn’t very convincing. I said, “It looks like you’re worried. Are You?” She hesitated and then said, “I’m all right. You keep going.” I said, “I will always be with you.” She smiled. I said, “We’ll do this together.” I don’t know exactly what was on her mind. I know it was concern about her condition. Neither of us addressed that directly, but I feel that we were communicating our mutual understanding indirectly. This was a sad moment.

Tuesday was a good day, but we did have an unusual experience at dinner. I believe I have mentioned that Kate sometimes sees little spots on the table that she refers to as “Little Things.” She often refers to them with the pronoun “he” and sometimes comments on their moving. This was one of those times. It usually seems like a harmless form of amusement. It was a little different that night. She saw more of them and thought they were harmful in some way. She thought they were in her meal of which she ate very little. She didn’t want to have dessert thinking they might be in it as well. She just wanted to go home. She was fine after we left.

I have been sleeping very well lately, but yesterday morning I awoke at 3:30 and couldn’t go back to sleep. I got up again at 4:15 and took a twenty-minute walk in the house. I got back in bed but still couldn’t sleep. At 5:45, I decided to get up for the day. I hadn’t been in the bathroom more than a couple of minutes before I heard Kate say, “Hey.” I went over to the bed and asked if I could help her. She said, “I don’t know.” She looked frightened, and I said, “You look scared. Are you?” She said she was. I got back in bed with her. She said, “I’m glad you’re here.”

I tried to comfort her for the next ten minutes or so. She seemed to be more relaxed, and I told her I might get up and get dressed. She wanted me to stay and asked if she was supposed to do something today. She said, “Do I need to get the eggs?” I’m not sure whether she really meant eggs or she just used the wrong word as she sometimes does. I told her she wasn’t responsible for anything “today,” that she could just relax and do whatever she and I wanted to do.

I put on some relaxing music and played it very softly as we talked. I spoke to her slowly and softly and comforted her. Off and on she responded to something I said with “I remember you said that last time.” I don’t ever recall her saying that before. At one point, I told her I loved her. She said she loved me too and was glad I was with her. Then she very naturally asked, “Who are you?” Two or three times she began to shake and said, “I’m scared.” Gradually she calmed down and was almost asleep at 7:00 when I again mentioned getting up to dress and have breakfast. She said that was fine.

About 8:45, I heard her call me again. She had gotten out of bed and wanted to go to the bathroom. She asked where she was and said she wanted to “get out of here.” I told her I would help her. It was also a time when she did not remember me. She let me help in the bathroom and dressing, but she was very unsure about me.

As we walked to the kitchen for her morning meds, she said, “I just want to lie down.” I took her over to her recliner. She sat down, and I put it in its fully reclined position. She forgot all about leaving and rested another forty-five minutes before she opened her eyes and looked over at me. She smiled. I’m not sure if she remembered my name or our relationship, but she was quite at ease with me. Then closed her eyes and continued resting.

I got her up in time for us to have lunch together before the sitter arrived. After lunch, she rested on the sofa. Mary arrived shortly after that, and I left. Kate was very comfortable about that. The two of them were chatting as I walked out the door.

I was surprised to see Kate sitting on the sofa looking at one of her photo books when I returned. Typically, she would be resting. She said she was glad to see me though she didn’t look at all disturbed that I had been gone. I walked Mary to the door, and she told me that Kate had asked where I was a number of times but didn’t seem unduly concerned.

I sat down to go through the photo book with her. She wanted me to identify the various people in the photos, but she quickly found that overwhelming. I suggested we take a break and go to dinner. She wanted to go to the bathroom, and I took her.

When she was finished, she was very disturbed about people we would see somewhere, apparently in her hometown in Texas. I told her it would be a long time before we made a trip to Texas. That didn’t help. She said she couldn’t help thinking about how her mother was feeling. On the way to the restaurant, she continued to worry about these people and how she should react to them. I assured her I would be with her and would try to see that everything went smoothly. She appreciated that, but it didn’t relieve her pain.

Once we were seated at our table, she continued to talk about these people. I never figured out what it was that she was afraid would happen, only that she was very disturbed. At one point, she started crying at the table. She recovered quickly, but it wasn’t until the food arrived that her attention was diverted, and she never mentioned anything else about it.

Before we left, we had an experience that was similar to the one we had the night before. When our server brought the check, Kate pointed to the table top and asked if the server could see “them.” She didn’t. Kate pressed her finger on the table and held it up to the server and said, “See?” The server played the game well. She pretended to pick “it” up from her finger and said, “Now, I’ve got it.”

The day ended well. We watched a couple of YouTube videos about the story and filming of The Sound of Music. I know she couldn’t follow it, but she was quite interested. As usual, she was awake when I got in bed. That is the most predictable moment of the entire day. She almost always seems at ease and glad that I have joined her. We usually talk briefly, express our love for each other, and say good night. I was glad to end the day on a positive note. We are certainly having more days that call for greater problem solving.

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An Unusual Day, Quite a Contrast with the Day Before

 

Caregivers for people with dementia recognize the need for flexibility. They know that things can and do change rather rapidly. Such was the case with Kate yesterday. I am glad that everything went so well the day before. Yesterday was certainly different.

We had a good start when she awoke around 7:45. I took her to the bathroom, and she took her shower without a problem. As I started to dress her, I was feeling optimistic. She wasn’t fully dressed when she wanted to lie down. That is not unusual, and we had plenty of time, so I told her she could. I gave her about ten minutes. Then I tried to finish dressing her. She wanted a little more time. I wasn’t concerned. I knew I could let her sleep another two hours.

At 10:45, I felt it was time to get her up. That would allow us to leave for lunch between 11:30 and 11:45 and get back for the sitter at 1:00. I encountered a problem when she didn’t want to get up. I told her I would be leaving for the Y and would like to take her to lunch before Mary arrived. She didn’t want to get up and told me to go ahead without her. I told her I didn’t want to leave her alone and that I really liked eating with her. Then I asked if she would do it for me. She still didn’t want to get up.

That was something new. She had always been willing to cooperate with me and get up even when she didn’t want to. I knew something was wrong and asked if she was feeling all right. She first said, “I don’t know.” Then she said, “I just feel blah.” I felt she was in a depressed state and said, “You seem depressed.” She said she was. Then I said, “If you are, I think I might be able to help you, but I would need you to get up. I think I can make you feel better if we go to lunch together.” She wasn’t buying that.

I tried several things to see if I could help her out of this state. I showed her a few photos from her “Big Sister” album. She smiled at the cover photo, but didn’t’ show much interest. Then I read about her grandfather in another book. I couldn’t find anything to help her.

It was then that I reminded her that Mary would be coming and that she could help her dress although I thought she might prefer me to help her. She agreed, but she still wouldn’t get up. I decided not to push her. I told her she could rest and that Mary would help her dress. She said she was fine with that.

When Mary arrived, I explained what had happened and took her back to the bedroom. I told Kate that Mary was here and that I was leaving. She greeted Mary with a smile. They exchanged a few pleasantries, and I left.

I checked via the video cam while I was gone and also called Mary once. Kate remained in bed the entire time. I had a feeling that it was easier to tell me she was fine with Mary’s helping her dress than to actually let her. When I got home, she was still in bed but awake. She smiled at me. I could tell by the expression on her face that her depression was over.

Mary left, and I asked Kate if she would like me to take her out for dinner. She indicated she wanted to go to the bathroom. I took her and helped her to the bathroom and finished dressing her. She acted as though there had never been a problem. I never brought it up. I feel sure she began to recover and wanted to go to the bathroom but felt uneasy asking Mary to take her. The rest of the evening was quite normal. We both acted like nothing had happened.

Kate has had a minor problem with depression since the early days of our marriage, but it has never kept her from doing anything. I never recall a time when she felt “blah” and wanted to remain in bed. Like all of her other behaviors, I can’t explain what brought this on. My suspicion is that it involves her keen awareness of how little she is able to do. She has been especially insecure the past few days, not only in her behavior but also in her verbal expressions. Fright has typically been the most negative of her responses to what she is experiencing. It doesn’t seem strange that depression might be a natural response as well.

For me, there is a big difference between fright and depression. I have always been able to reduce her fright, but I couldn’t break through her depression. Like fright, depression may not occur regularly. I plan to have a talk with her doctor and the doctor’s social worker. I want to be better prepared next time.

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Beginning Our 10th Year Post-Diagnosis

 

Tuesday, the first day of our 10th year Living with Alzheimer’s” started early and with some confusion; however, the day was punctuated with “Happy Moments” as well. About 5:30, I heard Kate chuckle. I chuckled back, and she responded with more chuckles. Then she started pointing to the ceiling moving her arm from one side of the room to the other. As she did this, she commented on “things” (that were not really there) that she liked. It wasn’t clear to me whether she was asleep or awake. When I said something to her, she responded. After a few minutes, I decided she was awake. She then immediately closed her eyes and went to sleep. This was strikingly sudden. It makes me think she really had been dreaming all along.

At 5:50, I told her I was going to get up. She told me not to leave her. She didn’t seem afraid, but she did say, “I don’t know how to say it, but I feel (paused while thinking of the right word) safe with you.” I stayed with her another thirty minutes before telling her I was going to get up and asked if she would be all right. She said she was fine. After I was dressed, she was still awake. I mentioned I was going to the kitchen and to call me if she needed anything. She said that would be all right, but she wanted me to come back and sit in a chair beside the bed.

As I was preparing to put my breakfast dishes in the washer, I heard her call. She wanted to go home. I told her I would take her. I got her to the bathroom and dressed quite easily. During that time, she said she wanted to “get out of here.” She also mentioned girls that were either here or would be coming. This also came up in the afternoon.

We went to Panera arriving about 8:15. That is very early for us. She worked a little on iPad puzzles but stopped to eat her muffin. She was tired and wanted to go home before 9:00. She rested for a couple of hours before we went to lunch. She was very talkative. Most of her conversation dealt with our marriage and also her feelings about our being a good match. At one point, she said, “You know we are so different.” She wanted to continue, but she didn’t know how to express her thoughts. I said, “But we’re so much alike on the things that matter.” She said, “Exactly.” It was a cold day, and we took a few minutes to get our coats on before leaving. Kate also had gloves. She asked if I could take a picture and wanted to make sure I got the gloves in the photo. It’s unusual for her to request a photo of herself. She also asked me to take one at another restaurant a few weeks ago. She wanted a picture of the two of us, and I took a selfie before we got in the car.

When we got home, she rested for an hour. I asked if she would like me to read something to her. She did, and I picked up the photo book of her mother’s family and read several things about her grandfather. She loved hearing about him and was most impressed. I’ve read this to her before, but this was the strongest reaction she has had yet.

Then I read a section that dealt with Battle Creek where her mother lived until marrying Kate’s father and moving to Texas. It focused on the work of the Kelloggs in the development of cereal at the Battle Creek Sanitarium (“The San”) where her grandfather was a doctor. She kept talking about “him.” I didn’t know whether she was talking about her grandfather, John Harvey Kellogg (CEO of The San), or W. K. Kellogg (who left the San and established the cereal company). She thought I had known “him.” I told her that her grandfather had died before I was born and that I was a child when the Kellogg brothers died. That didn’t penetrate at all. She kept saying, “And you knew him.” She seemed impressed. I am sure she felt I knew him because I was reading about all three of these men. To her, it probably sounded like I was telling her a story from my first-hand experience.

She finally tired and wanted to rest again. It was only a short time before she started talking and continued for an hour. I made some facilitating comments, but she didn’t appear to need them. She talked about something that is a variation of a topic she has talked about a number of times before. It always involves her, or our, helping people. A large portion of the previous conversations have involved educating women in impoverished parts of the world. This time she talked about a program in which we were already involved. It was designed to provide a broad range of education and job training for immigrants to the United States. She mentioned a selection process to determine those who would benefit most. The training itself was rather comprehensive and dealt with information about US culture, training for job interviews, and assistance in locating job opportunities that would match the skills and interests of the students. I was amazed at the details she brought up and the reasons each of these things was necessary.

The next surprise of the day came as we were about to leave for dinner. Without any prior signs or indications, Kate became very worried about not having delivered something to a man whose name she didn’t know. From what she said, she thought she was to deliver refreshments for a reception of some kind. She couldn’t tell me any specifics, but she became distraught over her failure to do what she had promised. As we drove to the restaurant, she wondered if I might be able to call him and work out a way to get it to him. After parking the car, I pretended to call him and that he had told me that the reception was actually the next day and that she had no reason to worry or apologize. This effort was unsuccessful.

As we walked up to the restaurant, the hostess opened the door and greeted us. Kate tried to act as though nothing was wrong, but it didn’t work. It did begin a process of diversion that got her mind off of what she believed was a failure to deliver on a promise. This process involved our conversation with our server, chatting briefly with a couple we know who sat at the table next to ours, and eating. Long before we finished our meal, she seemed to have forgotten the entire thing.

I had one more surprise at 12:30 yesterday morning when I heard her call me by name. I looked up from the bed to see her standing in the doorway to our bedroom. I quickly got up and went to her. She was very upset. She had gotten up to go to the bathroom, something that is exceedingly rare. To the best of my knowledge, she has never gotten out of bed without my noticing. I got her back to bed and then went to turn off the lights in the hallway. That’s when I discovered she had been walking around the house. Lights were on in two other bedrooms, family room, living room, dining room, and kitchen. She apparently came out of the bathroom and couldn’t remember how to get back to our bedroom and spent an unknown amount of time going through the house trying to find me. The good news is that she was able to calm down once she had located me. Another crisis was over. Our tenth year “Living with Alzheimer’s” is off to quite a start.

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Nine Years Ago Today

Most people remember specific dates that represent something significant that happened in their lives. I have a number of those, our wedding date, Kate’s birthday along with those of our children, grandchildren, parents, and siblings. We celebrate dates like these, but there are also dates when something happened that we don’t think of celebrating. January 21, 2011, is that kind of date for me. Nine years ago today, Kate’s doctor delivered the news that she has Alzheimer’s.

At the time, the news was devastating, but we made a commitment to make the most of the quality time remaining to us. I had no idea how long that would last. Here we are nine years later and still able to enjoy life and each other. I am very grateful for that. I can honestly say that these years have been among the best of our marriage.

Today, however, I feel other emotions as well. They are more like the way ones I felt when she received the diagnosis. I am just as intent on making the most of our time together, but at this last stage of her disease, I am more than bit apprehensive. I know that we won’t continue to live the way we have the past nine years. We are at the beginning of the stage people imagine when they think of Alzheimer’s. Our quality time is going to be more limited. This doesn’t mean our experience of “Happy Moments” will cease. It is just that they will be different. Even in the past few weeks, I see the challenges increasing. I mentioned a couple of them in my previous post. Another one occurred yesterday.

Kate was just as tired as the previous morning, perhaps even more so. Off and on for an hour and a half, I worked to gently wake her before my efforts met with success. I began with some soft music and gradually changed to more lively music. The first two two or three times I went to check on her, she was sleeping so soundly that she didn’t hear me at all. That has never happened before. My reward was that she smiled when she finally responded the last time I tried.

She was slow to get up and wanted to rest a little longer after she was partially dressed. While she rested, we talked. She repeatedly asked my name and where she was. This was a time when she didn’t remember me as her husband, but she spoke very comfortably with me. She didn’t express any great surprise when I told her we were married, but that didn’t stop her from asking my name.

She was in a good humor and kidded me a good bit. While lying in bed, she wanted us to sing something. I sang Edelweiss, but she didn’t sing along because she couldn’t remember the words. She wanted me to sing it again. I did and then played it on our audio system. That way I could give her the words just before each phrase. She enjoys singing.  It was an unusual and pleasant way to start our day.

It was our day for the sitter. When she arrived, Kate wondered who was at the door. I told her it was “Cindy, your friend who takes you to lunch on Monday.” She didn’t remember her but was very nonchalant in her response. She greeted Cindy warmly and never hesitated about my leaving with her. I didn’t have Rotary yesterday and almost canceled the sitter, but I thought I could use the time. I have also wanted to strengthen the bond between the two of them. I have had the distinct impression that Kate favors the sitter who comes on Wednesday and Friday and has been with since our second week with sitters. I believe that continuity helps and hope we don’t ever lose her.

The rest of our day went well. Kate was especially taken with some YouTube music videos I played for her last night. That took the place of her iPad on which she had started to work puzzles but lost interest. It was nice to see her enjoying herself. She was still awake when I got in bed. We chatted briefly and expressed our love for each other.

I make a point of mentioning the challenges of getting her up, her confusion and failure to remember my name and our relationship along with the good time we had once she was up. This is a good snapshot of what “Living with Alzheimer’s” is like for us. As long as she is happy, we will continue to live well. I hope I am wrong about the changes I believe will occur in the coming year. Despite my expectations, I am very grateful for the good times we have had in the past and feel sure we will have more in the future. We have, indeed, been fortunate.

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Delusions, Hallucinations, Dreams, and Paranoia

It is common for people with dementia to experience delusions, hallucinations, dreams, and paranoia. From time to time I have mentioned some of Kate’s experiences with them. They appear to becoming a regular part of our lives.

One of the most common is believing there are other people in the house. I usually discover this when she puts her finger to her lips and very softly says, “Shhhh.” Other times she makes references to “them.” I have never figured out who they are, but sometimes, like yesterday, she explains that they will hear us and “spread the word.” She went on to say how they like to gossip. I told her I didn’t think there was anything bad that anyone might say about her. She thought I was naïve. We were in the car on the way to dinner, and it wasn’t until we got to the restaurant that she was diverted to other things.

When we arrived home, she stopped to look at something on top of the dryer. She put her finger on several places. Then she told me she couldn’t catch them. I didn’t go back to look, but I didn’t see anything as we walked through the laundry room.

Something else is becoming more common. It is the little “thingies” in her hair, around her eyes, and between her toes. Running her fingers between her toes has become as much a focus of attention as pulling her hair. After she was in bed last night, she called my attention to something new. She thought “they” were on various parts of her body. She was trying to rub them off. I asked if they were painful. She said they weren’t. She rubbed her finger across her chest. Then she held her finger up and said, “See.” I told her they were quite small. Fortunately, her concern didn’t last long. I think that coincided with my starting a YouTube video of a Julie Andrews concert. She focused her attention on that. I’ve read about other caregivers using diversion techniques to solve problems like this. I am now grasping the value of that with Kate. Since memory doesn’t last long, redirecting attention often works.

Talking in her dreams is also more frequent. Prior to Alzheimer’s, I don’t recall her having these experiences. They don’t occur with any regularity. They are periodic and there have been a couple of themes. In the early years after her diagnosis, they focused on her classroom and/or library experience. She explained or gave instructions to her students. That disappeared long ago. I take that as a consequence of her loss of those memories.

More recently, her dreams have dealt with young girls or women who live in impoverished circumstances. They include her work with a program to provide education for them or to establish such a program. One of those occurred two nights ago when I got into bed. I thought she was asleep, but she started talking to me about our working together to create a program that would help people in need. I could never figure out exactly what she wanted to do but told her I would help in any way that I could. This conversation lasted fifteen minutes or so. I am pretty sure that she was awake. That makes me think about the difference between hallucinations and dreams. I suppose I would use the term hallucination if it is an experience she has when awake. The same experience while she is awake would be a dream. Whatever the definition, Kate has more of these experiences than she has before.

Most of these experiences do not bother me. The ones that do are those that disturb Kate. The most common type involves other people who might be out to do some harm to her. So far, these experiences have only involved her belief that people are saying or would say bad things about her. As we were about to leave the house last night for dinner, she was frightened by something and held herself close to me. She didn’t want to talk about. Then later while she was brushing her teeth, she insisted I remain right beside her while she brushed her teeth. It wasn’t said in anger, but fear. I wonder what lies ahead.

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Increasing Dependence

I have often commented on Kate’s dependence on me with respect to finding the bathroom, the full variety of bathroom activities, dressing, and helping with most other activities of daily living (ADLs). That continues, but I have observed other ways in which she is dependent. I’d sum it up by saying they involve my being a security blanket.

I mentioned one of those in my previous post when she didn’t want to go to lunch with the friend I had asked to take her. She has been to lunch with her on a number of occasions before and after her diagnosis, and, yet, she wouldn’t agree to go with her yesterday.

Yesterday she had a similar experience with the sitter. This one was with the sitter who has been with her more than two years. Kate wanted to rest after lunch, just fifteen minutes before Mary arrived. That’s not unusual. When I returned four hours later, she was still resting in her recliner although awake. I asked Mary if she had been there the whole time. She had. Mary said, she has encouraged her to get up, but Kate didn’t want to.

After Mary left, she asked me to show her to the bathroom. As we walked hand in hand, she expressed her feelings more clearly than she usually does. She conveyed that she liked Mary, but she said, “It’s good to be with somebody you really know.” She was relieved that I was home. When we reached the bathroom, I started to leave. Then she asked me to stay in case she needed help with anything. I frequently sense that she is at ease with me even when she doesn’t know my name or our relationship. This time, however, it seemed like she both knew me and that she was very grateful I was home.

As she finished washing her hands, I started toward the kitchen. When she came out of the bathroom, she didn’t see me and called to me. I went back to her. She was so relieved when she saw me that she was almost in tears.

We went to dinner at a nearby pizza place. Before I stepped away from the table to pay for our meal, I told her I was going to pay and would be back. I know she can’t remember, but there was no one ahead of me. In addition, The check out wasn’t too far from our table, and she has never been uneasy before. As I approached the table after paying, I saw that she had a worried look on her face and was looking all around for me. When I walked up to her, she said, “I am looking for my husband.” When she looked more closely, she recognized me. Again, it was an emotional experience for her.

Here is my own interpretation of what’s happening. She is sinking deeper into a state in which she can’t remember anything. That makes her afraid. I am the one who is most often with her and helps her. Of course, we also have a bond that is very strong after fifty-six years of marriage. When you put these things together, it’s not difficult to see why she might feel dependent. This has an advantage with respect to helping her with so many things. She still likes to retain some independence, and I think that is a good thing. Normally, however, she is usually receptive to me help. That makes caring for her much easier.

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Continued Mixture of Confusion and Happiness

Yesterday morning as I was taking my walk around 7:20, I heard Kate scream. I went to the room. She was upset but not as much as I would have expected from her scream. I am guessing she must have had a bad dream because she acted like she wanted to go back to sleep. I asked if he would like me to stay with her. She did, and I remained in the bedroom for about thirty minutes. Then I continued my walk.

She quickly went back to sleep and didn’t wake up until 10:20. At that time I heard her say, “Hey.” Her voice was soft, and I wasn’t sure that I had heard her. When I reached her, she confirmed that she had called. We talked a few minutes, and she seemed all right. Like the day before, I soon learned that she was confused. Before getting out of bed, she said, “Who are you?” I gave her my name told her that I was her husband. She reacted strongly to that, and I said, “I am a good friend, and I can help you with anything you need.”

We walked to the bathroom, but she was a little uneasy with me when she used the toilet and when she showered. She was resistant to my helping with her shower. She said, “Don’t ever tell anyone about this?”

The shower turned out to be good therapy. She enjoyed it and said she felt better when she got out. She was still guarded. She was comfortable enough to let me help, but she was also trying to keep her distance from me. A funny thing happened as I helped her dry off and get dressed. As she often does after a shower, she wanted to lie down on the bed. Then she surprised me by saying, “Don’t forget my (unclear, couldn’t think of the right word).” She pointed to her toes. She had already run her fingers in between each toe. Now she wanted me to do it.

When we left for lunch, she seemed quite comfortable with me, but I don’t think she recognized me as her husband. During lunch, I eased into some comments that would suggest we had known each other a long time. Our server told us she would be leaving to spend a semester in Berlin. I mentioned that we had visited there and that she would like it.

When she stepped away, I talked to Kate about some of the places we had traveled. I deliberately failed to mention our marriage. She seemed to accept what I said without any concern or confusion or fear that she didn’t remember these experiences. At little later, I mentioned that our son was planning a trip to see us. She seemed fine. I never asked if she knew I was her husband.

We had a very brief sad moment in the car on the way home. We had stopped at the pharmacy to pick up a prescription. As I came to the exit from the parking lot, she saw a stop sign. She tried to read it but couldn’t. I told her it said, “Stop.” She said, “What’s that?” I explained. She looked sad and said, “I don’t like to be a ‘duppy.’” She meant “dummy,” of course. I said, “You’re not a dummy.” You’re a smart gal.” She got excited and said, “Hey, and I didn’t even pay you to say that.” It’s been almost nine years since her diagnosis. She forgot a long time ago that she has Alzheimer’s, but she still knows at this late stage that she’s “not right.” She wants to be but can’t. That’s sad.

That moment really was brief. It lasted only minute. When we got home, she rested for a couple of hours in her recliner. As usual, her eyes were open off and on. I’m not sure how much she actually slept. I do know that she was quite calm and seemed happy. Halfway through her rest, I asked her if she was relaxed. She was. I told her I was as well.

A short time later, she accepted my offer to read something to her. This time I chose something different. I picked up the photo book that she and her brother had made in the early days after diagnosis. It focuses on her mother’s family who lived in Battle Creek. At the end of the book there is a section that focuses on the Kellogg brothers, Battle Creek as “Cereal City,” and the Battle Creek Sanitarium where Kate’s grandfather was a doctor. I read for about forty-five minutes. She was interested and asked me to re-read much of it as she tried to take in all the information. It had been a long time since I had read it, but I will put this on my list of things to read more frequently.

Our dinner and time at home afterwards were good as usual. With all the changes that are going on, I still find that afternoons and evenings are the most predictably good times for us. That’s a nice way to finish the day.