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Lots of Unpredictable Things, But There are Daily Patterns

I have come to appreciate the experiences of other caregivers who report the unpredictability of people with dementia. After seven or eight years of a rather steady daily routine, I don’t claim to be able to predict what Kate will be like from one moment to the next. There is one pattern, however, that seems to have emerged. Mornings are the most challenging times. The biggest problem is Kate’s waking and being confused or frightened. Thankfully, this doesn’t occur often, but it is strikingly different and more unpleasant than the way she has been in the past.

My way of making sense out of these experiences is to think how I would feel if I woke up and didn’t know where I was, who I was, or what I should do. Fright seems a natural reaction. It also makes sense to me that after being asleep all night, Kate hasn’t had any external stimulation that would give her a sense of comfort. Once she gets up and is exposed to the house, to me, and our routine, she feels more at ease. This usually occurs before we leave for lunch.

Some days I have to work harder, but very gently, to get her up and oriented. For example, yesterday morning I awoke about 5:00 and quickly decided to sleep another hour before getting up. At 5:45, Kate said, “Who is here?” I said, “I am.” She said, “Who are you?” I said, “Richard.” She didn’t say anything. I asked what I could do for her. She said, “I’m scared.” I asked if she could tell me what had scared her. She said, “I don’t know.” If it were not for our previous experiences and what I have learned about dementia, I might have probed to see if I could identify the problem. As it was, I know that when she says, “I don’t know,” I’m not likely to learn anything by asking questions.

I told her I wanted to help her. She asked my name again. Knowing that this might be a day when she sleeps later than usual, I asked if she wanted to go to the bathroom. She said she did and asked where it was. I told her I would show her. She was unsteady and confused.

When I got her back to bed, I asked if she wanted me to stay with her. She did. I got my laptop and took a chair beside the bed. I also played some relaxing music while she went back to sleep. Then I went back to the kitchen. It was over an hour before I went to the bedroom. I told her I wanted to invite her to lunch and asked if she would like to go with me. She did and got up and dressed rather easily. I think the key was not pushing her. It might not have been as easy for me if she hadn’t gotten up so early in the first place. We had plenty of time. We were the first people to arrive at the restaurant. That was a first.

She is generally all right in the afternoon, but in the past few months, she has experienced more delusions and/or hallucinations. This typically happens after she has been resting a while. I think that while resting she is drifting in and out of sleep and appears to have had a dream. She often talks to someone who is “not there” or to say something to me that suggests I have experienced whatever she has just experienced. The good thing is that she isn’t disturbed at all. Sometimes she is especially happy. That often happens when she believes she has an hallucination involving someone she apparently hasn’t seen in a long time. I say that because of the look on her face and the sound of the voice.

We had an experience yesterday afternoon that is a good example. She had been resting for more than two hours, and I walked into the kitchen for a few minutes. When I walked back into the family room, she got a big smile on her face and pointed to me. I said, “Well, I guess you recognize me?” She said, “Who are you?” I said, “Me.” She asked my name, and I told her and asked if it rang a bell. She wasn’t sure. I said, “I bet I know your name?” She said, “What?” When I told her, she said, “How did you know?”

I walked over to her and told her I knew a lot about her and her family. I don’t recall exactly what she said after that, but she conveyed that she didn’t know the words or how to say what she wanted to express but wanted to learn. She hoped I would be able to stay around so that she could learn from me. I told her I would be happy to teach her. I also said that she had a number of photo books with lots of information about her father’s and mother’s families as well as one her brother had given to her.

By then, it was time for dinner. I told her we could look at some of the books after we got home. As it turned out, she was tired and wanted to get ready for bed. She had forgotten about the books, but we will soon look at them as we do so often.

My explanation for this experience is similar to what I said about her morning fright. She isn’t frightened, but she has gone through a period of time (as long as two hours) when we have had minimal interaction. It’s not quite like the lengthy overnight absence of external stimulation, but it results in a sense of confusion. It’s as though the circuits of the brain have been asleep and need time to wake up.

Our evenings between returning home from dinner and going to sleep are clearly the most predictably happy and relaxed times of the day for both of us. By the time I get in bed, she has been there at least an hour. Except on the few occasions when she is sound asleep, she is always glad to see me. We often comment on having a nice day and express our love for each other. Then we peacefully drift off to sleep.

I believe the predictability relates to the fact that we have no commitments after dinner. It is simply a time to relax. I do try to keep to a routine bedtime for both of us, but that seems to occur without having to work. For at least an hour, I play YouTube music videos on the TV. Then I put on even more relaxing music on our audio system. It’s a peaceful time of the day.

Looking to the future, I suspect there will be a time when we start having lunch at home and, perhaps, separately. Doing so would prevent rushing her. Right now, I believe it is more important for us to maintain our active lives outside the home. In the meantime, I will continue to make the mornings as free of stress for Kate as I can. That means waking her gently and offering her comfort when she needs it.

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Something Old, Something New

For the past few years, Kate as worked jigsaw puzzles on her iPad while I watched the evening news. Now that she is less able to work her puzzles, we are trying to adapt. Without her iPad, she has little to do in the evening. When we return home from dinner, I usually ask if she would like to work on her puzzles. Sometimes she does; sometimes she doesn’t.

Last night, she asked if there was something she could read. What she was really asking is “What can I do now?” I always mention her puzzles, one of her family photo books, watch the news with me, or watch musical performances on YouTube. Last night, she said she wanted to work puzzles. I brought her iPad to her, but she changed her mind. Then I handed her the “Big Sister” album her brother Ken had made for her. This has been a big success since he gave it to her almost two years ago.

As she looked at it, she said, “What do I do?” I told her she could look through it and enjoy the many pictures of her and Ken and their family. She didn’t understand. (This is an experience that happens frequently now. For example, it happens when I give her the toothbrush to brush her teeth. Sometimes it occurs when I open the car door for her.) I tried to explain by commenting on several pictures.

This turned out to be one of those times when she thinks her photo book works like her iPad. She touches a photo and waits for something to happen. Once or twice I have observed her looking at other albums or magazines and doing the same thing. In those instances, she didn’t seem bothered by the fact that nothing happened. That wasn’t true last night. She wanted me to help her, but I found that an impossible task. Nevertheless, she was interested, and I really wanted to help her.

I told her the first thing to know was that touching the picture won’t do anything. I explained that she should just look at a picture and enjoy what she sees. I gave her a chance to try it. She immediately touched a photo and waited for something to happen. I reminded her that nothing would happen. I knew my efforts were likely to fail, but I spent about ten minutes trying to teach her how to enjoy the photos.

Finally, I suggested that we turn on the TV and pull up some Andre Rieu concerts on YouTube. That turned out to be a winner. Music came to the rescue again. I didn’t get to watch the news, but I took my shower and watched with her. We spent almost two and a half hours with Andre. It turned out to be a good evening after all.

As useful as some of the old tools in my box can be, it’s always nice to have new things I can add. Last week, I saw an ad on Facebook that said the company could compile a book of the photos I had posted over the past decade. The idea intrigued me, and I made the purchase immediately. The book arrived on Monday, and I was looking for the right moment to show it to Kate. Yesterday afternoon was a good time. She has rested about two hours, and it was still too early for us to do to dinner. I told her I had something to show her, and we both took a seat on the sofa. It’s a big book with 550 photos, so I was unsure how far we would get. As it turned out, we came close to looking at the whole thing. I was surprised. Recently, she has gotten tired when we have looked at some of her other photo books. Personally, I did find it a lot to go through in one sitting, but I was encouraged by her response and will look forward to looking at it again.

If any of you are thinking of having a book like this, I would suggest you do it more carefully than I did. During the ordering process, the company gave me a chance to edit. I thought it was too much trouble. For my purposes, I still think that was true. If I were doing it again, I would go through the entire book and delete unwanted photos and also change the order in which some of them appear. In my case, the book meets my needs. It gives me one other thing I can use with Kate to make her day and mine more enjoyable.

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More Delusions and Hallucinations

Kate has experienced delusions and hallucinations for several years; however, they are more frequent now. Let me tell you about two of them that occurred yesterday. The first is a variation of one that occurs most often. It involves her noticing small things like specs of food on a plate or table or other little things she sees at home on furniture or the floor. She often speaks of them as “him” or “he” or “thingies” and says other things that convey she believes they are alive. Sometimes I can see them. Often, I can’t. She likes to point them out to me. Whether I see them or not, I generally say I do.

As we walked to the car after lunch yesterday, she expressed concern that she had done something wrong. She didn’t know what it was, but she seemed quite worried. I told her I didn’t know anything that she had done. She asked if I was sure, and I assured her she hadn’t. Once in the car, she started to pick at her teeth, something she does frequently. A minute later, she said, “I got him.” She held out her hand to show me the finger on which “he” was resting. She asked if I could see him. I told it was hard to see while I was driving. Then she wanted to know what to do with him. I keep napkins in the car for moments like this and started to hand her one when she wiped her hand on the side of her seat. She looked sad and said, “I think I killed him.” She was very disturbed. I tried to console her, but she was bothered for a few blocks before her attention was diverted to something else. She frequently picks up “thingies” like this in restaurants. It is common for her to be saddened when she hears about any human suffering, but I had never seen her express any special concerns about the welfare of these “thingies.” This may be extreme example of how active her emotions are right now.

Last night we had another experience with a delusion. She had gone to bed early, 7:30, and went to sleep, something that rarely happens that quickly. She is often awake an hour or two before falling a sleep.

When I got in bed, she was glad to see me. That is not unusual. I think she finds it comforting for me to be in bed with her; however, this time she wanted my help with a project for children. She was concerned because it was her responsibility to carry out the project and didn’t know how. I didn’t find out who the children were or how she had become obligated, but I did learn that it was a project to use animals to help “boys and girls.” I told her I would help and asked what she wanted me to do. She wasn’t sure how to find either the children or the animals. I told her I had some contacts at United Way that would help identify children and could also direct us to existing agencies that might administer the project. I went on to say that I knew people who are involved with animal shelters who might be able to assist with animals. We must have talked fifteen to thirty minutes before I said we had identified a way to approach the problem and could get to work this morning. She was fine with that, and we went to sleep. She didn’t say anything about it this morning, but I am sure there will soon be something else to take its place.

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“Happy Moments” at Unexpected Times

As a caregiver, I put a lot of effort into thinking about ways to entertain Kate. I am often successful. I know that she responds to music and has some favorites to which she is especially drawn. Her family is also important to her. Showing her photos and telling her or reading about them is usually of interest. Taking “tours” of the rooms in our house is also a winner. I feel fortunate to have a toolbox with a variety of things that work. Of course, there are times when I am less successful than others, but there are also times when I don’t have to work at all to have “Happy Moments.” That was true on Monday of this week.

It was about 6:45. I had a load of clothes in the washer. I was looking forward listening to my book while walking, but first, I wanted my breakfast. The eggs were on the counter, and I was about to put the oil in the frying pan when I heard Kate say, “Hey.” I started to the bedroom and found her in the hallway. She had gotten out of bed and was looking for me. Although she seemed wide awake, she wasn’t sure where she was going and wanted my help.

I took her to the bathroom. Like most days, she wanted me to give her directions on everything. Sometimes when this happens, she resists my help. Not this time. She was very accepting but in a very natural way. She didn’t seem especially insecure and expressed no special emotion.

Of all the things I have worried about helping with bathroom activities were near the top of the list. Toileting and showering involve the most personal assistance, and I have resisted diving right in. Thus, it has been a long, gradual process. Yesterday it was clear that we have found our way to a comfortable place for both of us.

Although Kate always seems to enjoy her shower, she usually resists my effort to get her to take one in the first place. She seemed so compliant that I said, “This seems like a good time for a shower. Would you like that?” She paused a moment and said, “I don’t know.” That gave me the opportunity to be more assertive. I said, “I think that would be a good idea. I’ll start the shower for you.” That is all it took.

One of the things I’ve discovered is that once in the shower, she likes me to play an active role in bathing her. That works for me as well since it is easier than giving her instructions, and we can finish more quickly. She plays the role of director, making sure that I haven’t missed any places.

Kate enjoys the drying off process even more than showering. I have learned it is better to begin in the shower. That works better than walking out into a cold bathroom. Then I take her to the bedroom and put her in a chair where we finish up. At this point, she is fully relaxed, and I often joke that she is at “Richard’s Spa.” She often directs me to places that I may have missed, especially between her toes. I rarely get the deodorant on just the way she wants it. She lets me know right away. This part went swimmingly well. She seemed to be luxuriating in being cared for.

As she does on most shower days, she wanted to get back in bed. Since it was still quite early, that was fine with me. I did wonder what she might be like a little later. Sometimes her mood can change after resting or going back to sleep. The whole process of getting her up, showered, and back in bed had been another “Happy Moment.”

As someone who likes to eat very shortly after getting up and dressed, I was ready for my breakfast. She wanted me to stay in the room with her. I asked if it would be all right if I ate my breakfast and then came back. She was fine with that. After eating, I stayed with her until she woke up about 9:00. She was fine except for wanting me to take her home. I told her I would be glad to and had her clothes all ready for her. I don’t often mention it, but we also have many humorous moments. One of those occurred after she was dressed. I got her hairbrush, and as I did, I thought of an old song our grandchildren used to like, “Where is my Hairbrush?” Kate and I always thought it was a funny song as well. I started to sing it. Kate laughed as I forgot the lyrics. Then I went to Google and played the original song. We both got a kick out of it. It’s just one little thing that helped sustain an already good day.

Her eagerness to go “home” made dressing a simple matter. We were at Panera before 9:45. She worked on her puzzles, ate her muffin, and I took her home. She rested less than an hour before I suggested we go to lunch. She was receptive. As we walked out of the house into the garage, we faced one of our few rough patches during the day. It was bizarre. She was disturbed. It was difficult to understand her. It seems she had some connection with a group of people who had killed a woman and that she hadn’t told the authorities. She felt guilty. When I asked for an explanation, she didn’t want to talk about it. Nothing more was said, and, moments later, she was fine. I’ll add this to my list of things I’ll never understand.

We had a nice lunch and went back to the house where she rested for at least two hours. Then I asked if she would like for the two of us to look at one of her family photo books. She did, and we spent almost an hour reading from a book about her mother’s family. I didn’t try to go through the photos. Instead I read the narrative portion that focuses on biographical information about her grandparents and Battle Creek where her mother was born. She loved it, and although we revisit this album frequently, I loved going through it with her. The lunch and afternoon turned out to be another “Happy Moment.”

The rest of the day also went well except for a brief period after coming home from dinner. Kate worked on her iPad for a short time and became frustrated. She reached a point at which she didn’t know what to do at all. I suggested she take a break and get ready for bed. She was happy to do that. Her confusion continued as she took her medications. I gave them to her one at a time, but she didn’t know what to do with them. She started to put the first one in her glass of water. I explained that she should put it in her mouth and then use the water to wash it down. After the first two pills, she caught on. Then I took her to the bathroom and helped her into her gown. Once she was in bed she was quite relaxed.

The day was a good one. It also captures the way we can shift back and forth between good things and trying ones. I am grateful that most of our days include a preponderance of “Happy Moments.”

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Reflecting on Our “Good Days”

At this stage of Kate’s Alzheimer’s, I think a lot about the amount of quality time we have left. I don’t mean that I bask in sorrow. I don’t, but I recognize she is in the last stage when we are likely to make more adjustments to our lives than we have done before.

At the moment, however, I am particularly struck by the “Good Days” we have. It not only surprises me; it keeps my spirits up. We had two of those days this weekend. I would like to be able to take credit for them, but I think the fundamental cause was Kate’s mood. She was in very good spirits both Saturday and Sunday.

I might also expect that her good mood was accompanied by a lack of confusion, but that isn’t so. Saturday, she appeared to be rather clear-headed except for wondering where she was. I don’t recall her asking my name. That happens off and on. Sunday morning, she was very confused. She didn’t know my name or hers and couldn’t remember them well enough to repeat them. What made me feel good was that she didn’t seem disturbed at all about not knowing. I am thankful that is typical.

In addition to her good mood, our time together seemed special. Our obligations were minimal. The only official commitment was our dinner reservation Saturday night. She was up earlier than usual both days. We didn’t have to rush. That kind of schedule is the best for her and, thus, for me as well.

We also had a couple of special moments on Saturday. Both occurred after resting in the afternoon. One of those was my reading her a portion of a book about her family’s wedding veil. I’ve read it to her multiple times in recent weeks, but she is always taken with it. She did get tired and wanted to rest before we got well into it.

The second experience was after her second rest. She commented on a few things in the family room that led me to suggest that I show her some of the other rooms. On the way to the back of the house, we passed several photos and stopped to look at them while I told her a little about each one.

The next stop was our guest bedroom. Of course, she had no recollection of it at all and liked what she saw. She got tired of standing and asked if she could sit in a rocking chair. I saw a photo album of our children during their earliest years. We spent quite a while looking at it and never got to another room.

When we finished, it was time to get ready for dinner. This was the only moment in the day that could have become a problem. I had planned a nice Valentine’s dinner at one of the restaurants we usually visit for lunch. I suggested we change clothes and had picked out exactly what I wanted her to wear, but she didn’t want to change. I told her we were going out for a nice dinner, and I was going to put on something a little nicer. She was fine with that but wasn’t going to change. I didn’t push her.

A few minutes later after I had changed, she asked what I wanted her to wear. I told her I would get something and brought her the clothes I had picked out. She had apparently forgotten the conversation we had just had a few minutes before. I helped her change, and we were off.

The dinner itself went as I had hoped. We were welcomed by the manager, our server, and another server who sometimes works as a hostess. They had selected a corner table that was perfect for the occasion. The meal itself was quite good. In addition, a couple we know from our music nights at Casa Bella were seated at the table next to us. I don’t recall our talking about Valentine’s Day at all or anything else especially romantic. We just had a good time together.

Kate was up early Sunday morning. We spent a little less than an hour at Panera before returning home where she rested an hour before leaving for lunch. The restaurant was unusually busy. Consequently, it took longer to be served, but we had a good time. I haven’t said anything in a while about her asking Sinatra’s name when she looks at his mug shot, but that hasn’t let up. She is well-aware that she repeatedly asks and wonders why she can’t seem to remember it, but she doesn’t appear to be very disturbed.

She rested after we returned home with music playing as usual. She awoke about an hour before dinner. I suggested we take a look at a few things around the house. We began with some photos in the family room. As often as she has looked at them, I am amazed and happy that she enjoys them just like it was the first time to see them.

From there we went into the living room and dining room where I showed her a number of things that came from her parents’ home. I enjoy telling her the stories behind each of the items, and she was entranced. It was another special moment.

We are both fortunate that repetition has not diminished the pleasure for either of us. She can’t remember, so it is always new. I like telling her things she can’t remember and seeing her reaction as I tell her. I read a lot about other caregivers’ experiences and know that many of them are bothered by so much repetition. I wish I knew how to help them. My experience is different. Whatever the reason, we have been able to maintain a relationship that has been important in helping both of us adapt to all the changes we have had to make. She feels dependent on me and is normally responsive to the things I want her to do. I want to deserve her trust and work hard to make her life as happy as I can. One of the ways I can do that is to answer her questions and do the things she enjoys so much. I believe each of us loves the other more now than at any other time in our marriage. I think that carries us a long way.

I continue to be mindful of the pleasure she and I can experience through her intuitive abilities. I like to think this is something from which other caregivers could benefit to make their loads lighter. At the same time, I recognize the likelihood that many of them are facing other challenges that we have not faced. Among those would be health and financial constraints. I feel for them and am grateful that at this late stage of Kate’s Alzheimer’s, I see little, if any, loss of pleasure that comes from music, beauty, and associations with family. How long will this last? We will see. I am hopeful that it will continue for some time.

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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.

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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.

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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.

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Yesterday Afternoon and Evening

I am glad to report that the afternoon and evening went quite well yesterday. Kate got up from her late-morning rest and we had a very nice lunch and made it back for her 1:30 hair appointment without having to rush. Leisurely going about our daily activities works best for both of us.

We were back home before a big rain storm hit the area. It was so bad that I called the restaurant to make sure the program was still on for the night. It was. I told the woman on the phone that we would come if the rain slackened; otherwise, we would stay at home. As it turned out, the rain was lighter and we went despite the nasty weather conditions. It turned out to be fine. The crowd was a little lighter, but the program was excellent. Kate sat beside the 95-year-old woman who used to run the restaurant before her daughter took over years ago. Another couple we had not met before sat across from us. Kate didn’t participate much, but I don’t think she felt left out. We both enjoyed the evening.

During the afternoon and after we returned home, she was talkative but seemed to have more trouble expressing herself than usual. She talked for an extended period before dinner. I don’t even remember what she talked about. That may have been because I couldn’t understand her. She used a lot of wrong words and often acknowledged it. In addition, her comments were filled gestures, “You knows,” and vague words like “things,” or simply “da, da, das.”

The other talkative period lasted approximately thirty minutes as I was trying to get ready for a shower. Everything had been going smoothly. She had been in a cheerful mood the whole day. That continued as I started helping her get ready for bed. We got to the part where it was time for her to remove her pants, and she refused. I explained that she hadn’t put on her nighttime underwear. That had no impact. I tried to gently coax her and finally said something that changed the tone of our interaction. I don’t remember exactly what I said, but I apologized and suggested we step back and think about our relationship. I conveyed my love for her and mentioned that we have always respected each other and that my only desire was to help her.

She immediately changed her tone of voice and began a lengthy conversation (soliloquy). She started talking about our relationship and how much she appreciated what I do for her. Then she began to talk about how we could help a boy in need of something. I only picked up that he had a sister but little else. It was impossible for me to understand. All I can say is that she talked for thirty minutes and was strong in her belief that she and I together would be able to help him.

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Alzheimer’s is Making Its Presence Felt

As if I needed further confirmation, yesterday was another time when Alzheimer’s seems to be taking over our lives. It was Monday, my Rotary day and the day our sitter arrives at noon. I turned on some music to gently wake Kate around 10:40. That should have given us plenty of time to be ready, but that was not to be.

She was still asleep when I went to wake her at 11:00. She smiled and was in a good mood, but it was also a morning when she didn’t want to get up and didn’t recognize me. I explained that Cindy was coming to take her to lunch and that I would be glad to help her get ready. She said, “I’ll get up.” This is what she said repeatedly the day before and on the few other occasions when she didn’t want to get up. I tried not to push her because she is then defiant and isn’t going to comply.

I tried some music that she liked. We even sang a couple of songs together, but she wasn’t going to get up. I accepted the fact that she wasn’t and got her a breakfast bar so that she would at least get something in her stomach.

When Cindy arrived, I briefed her on the situation. I also took her to the bedroom to show her the clothes I had laid out for Kate. I told Kate goodbye, and she was quite accepting of my departure.

I had intended to go directly to the Y after Rotary. Instead I put in a call to Cindy to see how things were going. She didn’t answer. I decided to drop by the grocery for a few breakfast items and then go home to check on Kate. When I arrived, I discovered that Cindy had gotten her up and dressed and had given her a breakfast bar and a Dr. Pepper. We chatted briefly, and Kate seemed back to normal. She didn’t express any great enthusiasm to see me.

Cindy still had another hour and a half before she was to leave. I was encouraged by how Kate was doing and decided I would leave. I told Kate I had a few more errands to run and would be back a little later. She very adamantly said, “You are not.” At the time, she was eating a breakfast bar. I remembered that it was the last one and told her I forgotten to buy more (which was true) and needed to go back to the grocery store. She accepted that. I went back to the store. Then I dropped by Starbuck’s for a while before returning home. This was a time that I really appreciated the break and wished there had been time to go to the Y.

After Cindy left, we had about an hour before we would normally go to dinner. I suggested that Kate and I look through one of her family photo books. She liked the idea. We sat on the sofa and started to go through one of them. She was interested, but, within five minutes, she said, “Would you mind if I . . .?” She didn’t finish her sentence. I knew she was tired. She wanted to lie down for a while. I told her that would be fine. She must have been very tired because she actually went to sleep. An hour later, I asked if she was hungry, and we went to dinner.

She was tired when we got home. I put her in her chair in the bedroom and gave her the iPad. Then I turned on the evening news while I put fresh sheets on the bed. I soon noticed that she was just staring at the TV and hadn’t used her iPad at all. I asked if she would like to get ready for bed. Then we went through the routine of getting her teeth brushed and into her bedclothes. She was very cooperative. I put on some YouTube music videos that she likes, and she was asleep very shortly. That is unusual. I was especially surprised after she had gotten up so late and taken a nap just before dinner. She must have been very tired.

It was two weeks ago yesterday that we had our first experience like this. That was the day I thought she was depressed. None of the subsequent experiences made me think she was depressed. One or two times she just seemed tired. Saturday it seemed like a combination of being tired and being dehydrated and, perhaps, experiencing low blood sugar. Yesterday, it seemed to be a simple case of being tired.

I should add that almost simultaneously she has been unsteady on her feet. I say almost because she has experienced mobility problems for a while, but she has been particularly uneasy walking during the past two weeks.

I have reflected more on her symptoms. It seems like her body is in the process of shutting down. That is to be expected with Alzheimer’s and other forms of dementia. Part of the problem for me these past two weeks is my desire to continue living as we were. I plan to adapt to the current changes by accepting the fact that we may not be able to go out for lunch and, perhaps, not dinner on a regular basis. There are a variety of other ways that I can arrange to take care of meals.

The bigger issue for me is the loss of social contact. That has been very important for both of us; however, that is also something we should be able to manage. It is no surprise to me that we are facing this issue. At the time of Kate’s diagnosis, I never imagined that we would be able to live so “normally”  for so long. Of course, it hasn’t been normal at all, but we have been able to stay active. The suddenness of the recent changes has led me to respond as though this might be something that passes as quickly as it came.

I think it is good for caregivers to know what we can and cannot change. I have already accepted many things that are beyond my control with Kate’s Alzheimer’s. This may be one more change to which I will adapt. If this isn’t the time, it won’t be long until it is. I am ready to accept that.