Diversion Seems to Work (At Least Yesterday)

Yesterday, Kate woke up and wanted to go home. We went to lunch. She forgot about home and didn’t mention it again. On a number of other occasions, I have found that going out for a meal is an effective diversion technique.

We had a sitter during the afternoon. When I got home, Kate was resting. I spoke to her, and she talked with me as though I were entering a dream with her. She thought someone had had a baby and asked me about him. At some points, I thought she was talking about having had a baby herself. Other times, it seemed like it might have been a son or daughter though she never said specifically. She was excited, and said, “We have a baby.” She asked “his” name, and I gave her the name of her father. She was thrilled. Not long after that, she asked “her” name. I gave her the name of her mother. She was equally excited. She continued talking about the baby after we were seated at the restaurant. She wanted to know when she would be able to hold it. She also wanted to know where the baby was. I found this to be a challenging conversation. Once I had started to go along with her, I found myself having to get more creative in answering her questions. I decided it might be good to redirect her attention and suggested that we go to dinner. She wanted to rest a little longer and asked if the doctor said it was all right. I told her he said it was fine, and we left for our Friday night pizza.

Her enthusiasm continued in the car and at the restaurant. It lasted so long that I thought the conversation might continue even after we got home. At one point, she asked if the children had called. I told her they hadn’t and explained they had been busy. She couldn’t believe they hadn’t even called and said, “But it’s our baby.” Fortunately, when the pizza arrived, her attention drifted to eating. I didn’t hear a word about the baby after that.

Examples of Kate’s Decline

Each morning I find myself wondering “What’s in store for today?” Even though most days go well, I am always on alert for problems. That’s how I was two days ago. I knew the sitter was to arrive at 1:00 and that I had an appointment to donate platelets shortly after that. I wanted to get her up in time for us to have lunch together. Around 9:00, I was encouraged when I heard her talking . I went back to the bedroom. She greeted me with a smile and chatted a few minutes. She said she was waiting for someone to take her home. I told her I would be happy to do that. She said that her mother would do it. Then she said it was “that guy” whose name she couldn’t recall. I asked her if she was ready to get up. She wasn’t. I told her I would be in the kitchen and to call me when she was ready. I was going to give her another hour or so before going in again, but less than thirty minutes passed before I heard her say, “I’m here.” She was ready to go home.

I took her to Panera for a muffin and then to lunch. As my previous posts about her sleeping later suggests, she gets very tired. She had taken her place on the sofa in the family room before Mary arrived. She was still there when I returned. During the past two or three weeks, with a couple of exceptions, she appears to have rested the entire time the sitters were here. Although she is comfortable with both sitters, I have the impression that she is going through a stage when she feels especially dependent on me and simply waits for me to come home. I am sure that is true with respect to using the bathroom. I’m only aware of one time she has gone to the bathroom while the sitter is here. That was recently when the sitter helped her get up and dressed after she had slept late.

I see this dependency in other small ways. She likes me to sit beside her when we sit in a booth at restaurant. The same is true at Casa Bella when we are seated at a table for six or eight. She wants to hold my hand more often when we are walking. She wants more instructions about what to do when toileting, brushing teeth, taking a shower, getting ready for bed. She hasn’t given up all signs of independence, but she is coming close to that.

She is forgetting a lot with respect to eating. She often points to the bread on the table at a restaurant and asks what it is. When I tell her, it doesn’t necessarily help. She is still a good eater, but she often fails to recognize the entree on her plate. She doesn’t recognize the salt and pepper at our neighborhood Mexican restaurant. Part of the confusion is that they are in the small Corona beer bottles, but the salt and pepper are clearly visible though not to her.

She also worries more frequently. Sometimes it involves a belief that she has an obligation of some sort. She worries about whether she has forgotten to do something. She also worries about people who have financial and health problems. The other night she talked a good while about some kind of disease that is being transmitted from mothers to their babies. She said there was a preventive medication that mothers can take. She told me she was planning to have herself tested. On the way to dinner last night, she was worried she might have done something to me that she shouldn’t. I assured her she hadn’t.

I also notice she isn’t as cheerful throughout the day. I think that goes along with her being tired. She does, however, have moments off and on during the day when she is very lighthearted and takes great pleasure in teasing me.

Taken together these things and many others are signs of the progression of her Alzheimer’s. We still have “Happy Moments,” but it is clear that I am unable to control everything. Some people suggest the disease always wins. In a sense this is true; however, I consider it a victory that we have been able to live happily, even joyfully, for so long. I intend for us to do as much as we can as long as we can, but I also recognize the reality that Kate’s decline means significant changes in our lifestyle.

No “Sleeping-In” Yesterday

Following two consecutive days of not wanting to get up, Kate awoke early yesterday and wanted “to get out’a here.” Except for believing she was in an unfamiliar place, she was in a good mood. For me, one of the good things about her wanting to get away is that it makes it easier and faster to get her up and dressed. We were at Panera before 10:30. She worked on her iPad but focused mainly on her blueberry muffin and wanted another. I told her we would be going to lunch in thirty minutes and asked if she could wait. She was agreeable.

The afternoon was our usual one. She rested a couple of hours. Then I suggested we look at a photo album of pictures taken when our children were pre-school age. We did that for a while before our daughter called. We had a nice conversation and Kate handled it well. After the call, we returned to the photo album, but Kate wanted to rest a little longer.

When I suggested our going to dinner, she didn’t hesitate getting up. That is normal. I don’t recall her ever having trouble getting up after resting in the family room in the afternoon. I wish I could say that about the morning when she is in bed.

She was confused about where she was as well as who I was but wasn’t disturbed. She asked my name and asked if we would be coming back for the night. She also said a few other things that made it clear she thought we were in someone else’s house.

At dinner something came up that made me mention our marriage. Kate was shocked. I was surprised at her reaction because we had been talking so comfortably about our relationship. It wasn’t simply that she was shocked. She couldn’t imagine how it was possible that she could have forgotten something like that. Fortunately, I was able to divert her attention. She was fine after that, but I felt bad. I intend to be more careful about that in the future. I think I have been unconsciously trying to keep that memory alive. Now I am beginning to believe that it may be time to let it go. I’ll just assume that she doesn’t remember and not try to remind her. There are enough incidental reminders when we browse through her photo books and interact with other people.

We had one of those middle-of-the-night incidents at 1:30 this morning. I woke up as Kate sat up on the side of the bed. I got up and went around to her side to help her up. She seemed wide awake and cheerfully greeted me like someone she might have recognized but not known. It wasn’t long before she said, “Who are you?” I told her my name but said nothing of our relationship. She didn’t ask.

I asked if she wanted to go to the bathroom. She didn’t. She asked about “the others.” I told her we were the only ones “here.” She seemed surprised but didn’t question me. I asked again if she would like to use the bathroom. She asked where it was. I told her I would show her. We usually hold hands, but she didn’t want to this time.

When we reached the bathroom, I stepped in and turned around to direct her to the toilet. She showed no interest in coming in. Instead, she was obsessed with what time she should “be there.” I never found out where “there” was, but it was important to her. I told her she didn’t need to be there until “1:00 tomorrow.” She was surprised and asked about today. I told her it was the middle of the night and that she would need her sleep to be ready for tomorrow. She went back to the question “What time do I have to be there?” We went through a repetition my standard answer and her standard question. A couple of times she asked what time she would have to leave, but her emphasis was on what time she had to be there. She couldn’t remember and kept asking.

Finally, she used the toilet. When she was finished, she noticed two pictures on the top of a nearby cabinet. One was a photo of my mom and me. She pointed to my mom and wanted to know who she was. When I told her who she was, she said, “I remember her. She is very nice.” Then she asked about my sister. I don’t have a sister but said she was fine. Then she said my sister was very nice and that she liked her. Before getting back to bed, she commented several other times about my mom and sister and how nice they were.

Once in bed, she was still wide awake for a short time. I tried not to encourage much talking, and she soon drifted off to sleep. She is still sleeping as I finish this entry. On the video cam I just saw her moving a few minutes ago, I will check on her and see if she is ready to get up. That would be nice. I don’t have Rotary today, and the sitter is coming at 1:00 rather than noon. If she gets up soon, we would be able to have lunch together. That would be a good way to start the week.

Consult with Kate’s Doctor

Yesterday, for the first time, I had an appointment with Kate’s doctor without Kate. It was a direct result of Kate’s recent desire to remain in bed rather than get up for lunch. Coincidentally, yesterday was one of those days. This was the fourth or fifth time in the past two weeks. Like all but the first time, she was relaxed and smiling. She seemed to be in a good humor. She just wanted to stay in bed. That’s what she did. I wasn’t able to get her up until after the sitter left just before 5:00 p.m., and she didn’t want to get up then but agreed after my coaxing. She had been in bed over twenty-one hours except for a brief bathroom break around 8:00 a.m. We did get out for dinner, but she went to bed before 7:30 and went to sleep quickly.

I interpreted the first incident as a case of depression. The others didn’t seem anything like that. She was just tired. On the days when she was willing to get up (ten out of fourteen), she was very tired, unsteady on her feet, and felt very insecure. These signs made me think that it was a part of the natural progression of her Alzheimer’s. When her doctor offered to see me, I was happy to accept.

It was a good visit and reminded me of why we have valued this geriatric practice for over twenty years. It is a partnership between our medical school and our largest hospital system. My mom and dad were the first of our family to go there in 1998. Since then, Kate’s mother, Kate, and my dad’s lady friend have all had physicians in the practice. We have always been pleased. There is virtually no wait time. In addition, the doctors spend a great deal of time with the patient and the patient’s family. They are especially good with dementia patients because the doctors always recognize them as the patient. In a situation like this it would be easy for a doctor to look at and speak directly to the family.

I was only there thirty minutes, but I achieved what I needed. I had sent a note of several pages describing Kate’s symptoms over the past few weeks. She had a variety of follow-up questions. I gave her my thoughts about the likelihood that Kate’s changes were just part of the natural progression of the disease. She agreed and handed me a piece of paper with a set of symptoms characteristic of the various stages of Alzheimer’s. They were expressed more specifically than what I had seen before. We focused on those for Stage 7.

7a. Ability to speak is limited to approximately a half-dozen intelligible different words or fewer in an average day.

7b. Speech ability is limited to the use of a single intelligible word in an average day.

7c. Ambulatory ability is lost (cannot walk without assistance).

7d. Cannot sit up without assistance.

7e. Loss of ability to smile.

7f. Loss of ability to hold head up independently.

Clearly, Kate doesn’t hasn’t reached any of these stages. She is losing her ability to talk as well as her ambulatory ability. Her doctor told me that Medicare eligibility for hospice begins around 7c above. I found that sobering. My impression from personal experiences is that the mention of hospice often catches caregivers off guard. It did when my mom’s doctor suggested it was time. She died a few months later. The same was true with my dad’s lady friend. She died less than a week after the doctor recommended hospice.

I don’t mean to suggest that Kate is that near the end of her life. My mom and Dad’s lady friend were much further into their disease than Kate is now. On the other hand, it is a sign that we are much closer to the end than I have sensed. This makes me think about something that I have mentioned before. I hope that Kate does not linger for long. She and I have shared the desire to die quickly. I don’t think we are unusual in that regard. I would love for her to be spared an extended period of time when she is completely bedridden or resting in a wheelchair.

Over the past few months, Kate has occasionally worried about, or at least been puzzled by, what is happening to her – why she can’t remember important things like her name or mine, being married, having children, or being able to remember how to do so many of the activities dialing of living. I wish she weren’t so self-aware. That is painful for both of us.

Ultimately, what I am concerned about is not within my control. All I can do is make her as comfortable as I can and provide her with as much pleasure as I can. It is almost 10:00 a.m. as I close this post. She is still sleeping. I really hope we will be able to get out today, but that’s another thing I may not be able to control.

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.

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.

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.

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.

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.

Unanticipated Issues

Yesterday things were going well. Kate woke up early, showered and dressed without any difficulty. I was especially pleased because we were going to visit friends in Nashville, and I was eager to eat an early lunch before our departure. We were also early enough to get to Panera for a short time and get back home for Kate to rest another hour.

Lunch went well until very near time to leave when she started looking for her napkin. At first, I didn’t know what she wanted because she couldn’t remember the word for napkin. When I asked if she was looking for a napkin, she said she was. I pointed out that she had put under her plate with her utensils. She didn’t understand and said, “Where is it?” I pointed to it. She pointed to her salmon and said, “This?” I told her it wasn’t and reached across the table to point at it. She didn’t see it. Then I put my hand on it and said, “This is it.” That didn’t work. Then I asked her to pick up her plate. She didn’t understand. I picked it up and put it to the side. Then I showed her the napkin and told her she could wipe her hands with it. That didn’t work either, so I said, “Let me show you.” I got up and went to her side of the table where I picked up the napkin and started wiping her hands. Her mood changed immediately. She said, “I wanna’ get out of here.”

It was a frustrating situation for both of us. I didn’t have any trouble understanding that she was having two problems, both of which are directly related to her Alzheimer’s. One is her vision. The other is her ability to understand directions. I was trying hard not to show my frustration, but I wasn’t successful. As we left the restaurant, she said she couldn’t do anything right. I thought she was upset with me, but it turned out she was only thinking about her inability to follow my instructions. I felt guilty for making her feel that way. After we had been on the road to Nashville about fifteen minutes, she was fine again.

This episode is a good example of how quickly things can change. It is also a reminder of something I already know. I need to be very careful how I respond in situations like this. She is very much aware of her problems, and I don’t want to diminish her sense of self-worth.