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Morning Confusion and Fright, But a Pleasant End of the Day

Kate was sleeping soundly when I woke her about 10:45 yesterday. She got up without a problem. I thought everything was fine. It wasn’t until I helped her out of bed that she showed any signs of fright and confusion. It was a time when she didn’t have any idea of who I was but gladly responded to my assistance in every way. I told her I was her husband, and she said, “No.” I said, “How about good friends?” She said, “That’s better. She depended on me to tell her what to do and how to do it. For example, washing hands and brushing teeth were like she had never done either before. I was very careful not to rush her. I knew she had plenty of time to be ready for the sitter. That may have helped. I know she didn’t get irritated with me at all.

After she was dressed, she was disoriented. I took her through the hallway outside the bedroom to see photos of her mother and grandmother. She often guesses the photo of her mother is of her. This time she had no idea. She also expressed less interest in the photos than the past. Then we went directly to the kitchen for her morning meds. That went smoothly. When she had taken the last one, we had a few minutes before the sitter was to arrive. I told her she would be going to lunch with Cindy, and I was going to Rotary. I don’t remember her exact words, but she sternly said something like, “You are not.” I asked her to come with me and took her to the family room. I showed her The “Big Sister” album. She didn’t recognize herself or her brother in the cover photo.

We sat down on the sofa, and I opened the album and showed her the pictures on the first few pages while giving her a commentary on them. Her interest grew. A few minutes later when Cindy arrived, she was happy. Cindy sat on the other side of Kate, and I went to the kitchen to get my things. I walked back to the room to say goodbye and noticed that they were looking at a picture of Kate’s parents. I made a comment about them, and Kate said, “How did you know?” I told her that I knew her parents. She turned to Cindy and said, “I don’t even know who he is.” I said goodbye while the two of them continued looking at the photos. She didn’t show any concern that I was leaving. I felt good that she was comfortable with Cindy.

When I returned home, Kate was, as usual, lying down on the sofa but not asleep. She didn’t express any enthusiasm about my being home, but she wanted me to help her up. I discovered a few minutes later than she was ready to leave. She wanted to go home. I took her to Panera and got her something to drink. She worked on her iPad, and I did the same on mine. She got along pretty well on her puzzles without much help from me. An hour later, I suggested that we eat dinner there instead of going for our usual Mexican meal. When we finished, I took her back home. She didn’t say anything more about going home. This routine of leaving the house for “home” has worked each time I have tried it. That makes it an easy to address this problem. It is certainly better than telling her she is already at home.

Kate worked on her iPad for almost an hour after our return, but she had great difficulty with her puzzles. I was seated in a chair across the room from her watching the evening news. Every few minutes I had to get up to help her. She tired of this before I did and asked if she could get ready for bed. I turned on YouTube with a series of Andre Rieu videos that she enjoyed for an hour and a half. Then I put on some especially relaxing music on our audio system. When I got in bed, she was still awake but very relaxed and happy. That was two hours after she had gotten to bed. That is rather commonplace now. It may be that she isn’t really that sleepy. She just needs to rest her brain for a while. The music relaxes her. She doesn’t have to hurry to get somewhere. And she doesn’t have to experience any of the normal frustrating or intimidating situations she does at other times of the day. Living with Alzheimer’s is an emotional ride.

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Yesterday’s Roller Coaster Ride

One week ago today, Kate had her most difficult day. Yesterday was another day, the third in a week, that Kate has experienced similar symptoms. She was very tired, confused, and troubled/sad. She was smiling when I got her up. I helped her dress without a problem.

Everything was fine until we started to leave for lunch. I walked ahead of her from the bedroom toward the kitchen. She was coming out of the bathroom and didn’t see where I had gone and called to me. I turned around and went back. She was frightened. She said, “I know you wouldn’t leave me, but I didn’t know where you were.” That set the tone for getting to the car for lunch as well as leaving the restaurant and getting in the car there. She was simply frightened but didn’t know why. As she had done the day before, she said, “Help me. Help me.” as she got in the car. She got along well at lunch.

The worst time was during the afternoon after she had been resting for almost two hours. After that, I suggested that I read to her. That appealed to her, and I read a little from Charlotte’s Web. Her eyes were open, but it didn’t appear that she was paying attention. I stopped and asked if she was enjoying my reading to her. She seemed to be in a trance. I told her I would stop if she wanted me to. When she didn’t respond, I said in a louder voice, “Can you hear me?” Although she had her eyes open, she responded as though I had waked her from a deep sleep. Then I repeated my questions. She didn’t want me to read. She was tired and wanted to rest.

I agreed to that and remained in my chair close to her recliner. She became talkative but was delusional. I told her she looked frightened. She said she was. I asked if she could tell me why. She said, “I don’t know.” I told her I would like to help her. She said, “They want to kill me.” I asked who, but she didn’t know. We had just finished a chapter in Charlotte’s Web in which they talked about Zuckerman’s intent to kill Wilbur. I suggested she might have gotten the idea from that. She acted like that might have been a possibility. I feel sure it was.

Once again, she said she was tired. I felt like I should do something to divert her attention to whatever she was afraid of. Instead I let her rest a little while. It wasn’t long before she was talking about the house. It was obvious she didn’t realize we were at home. I shifted gears and told her I would like to show her something and asked her to come with me.

I took her hand and walked her to the living room where I pointed out several things that had come from her parents’ home. She was interested but sad because she said, “I never got to know my parents.” Then she went on to say that they had had a rough life and grew up poor. She also said she couldn’t remember anything about them.

She was most interested in a fresco we had bought in Italy fifteen years ago. It was the first time in the past year or two that I recall her being taken with it, even more so than some of the things that had belonged to her parents. She wanted to sit down on the sofa. Then she began to talk about the room. She said she “liked what they had done to the room.” My reminding her that we bought the fresco did not convince to her that this was our house.

It was very clear, however, that her mood was changing. By the time we got to the dining room, she was quite interested in several other items that had come from her parents home. It wasn’t quite 5:00, but I suggested that we get ready for dinner.

She was a little bit skittish getting in and out of the car and from the car to the restaurant, but she seemed fine otherwise. When we got home, I suggested that we sit together on the sofa in the family room and go through one of her photo books that features a family wedding veil that had been purchased by one of her aunts for her wedding in 1924. She was enraptured.

When we finished, we began a conversation about our marriage and the happy times we have had. It was a touching moment for both of us. Earlier I had made several recordings. I am especially glad that I recorded this one. There is quite a contrast between this conversation and the others. She was happy again.

When we finished, we went back to the bedroom where I put on some YouTube videos and helped her prepare for bed. Everything went smoothly. She was fine, but we had had some rocky moments. It was another successful example of diverting her attention from whatever was bothering her. It also reinforces my previous guesses that when she is passive, her mind wanders. She begins to imagine things that are problematic. Yesterday, it was women who were out to get her. I don’t know how long I’ll be able to divert her. I am glad that I have a number of different things that help – music, photo books, tours around the house, conversations about family and our marriage. I can’t depend on just one to come to the rescue now. The good thing is that it is still possible to turn her around, but it’s getting harder.

I was very disturbed by her rambling during the afternoon and suspect I haven’t seen the last of this. She is entering a new phase of this disease, one I don’t like. When she bounced back, I did as well. We had an especially good time with the photo book, and the day ended on a high note.

Although I feel better now, I believe she has taken a sudden decline. I have read other caregivers accounts of similar declines. In fact, one of those was reported in a Facebook post yesterday. I also know of a former college roommate who took a steep decline and died about a month after Kate and I had been with him and his wife. I know someone else with dementia who died less than six months after I last saw her and thought she was doing quite well. While I am not ready to let her go, I would prefer that she go quickly rather than lingering for years. I have suspected the latter since she currently has no other medical conditions that might shorten her life. That, of course, is beyond my control. I will continue to focus on keeping her happy and secure.

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Another Day of Confusion

Kate got off to a rough start today, and I feel that I may have played a part in creating the problem. This is a day when I felt I didn’t need to rush her to get ready. I turned on some relaxing music to wake her gently. After thirty minutes, I decided it was time to get her up. I did something I don’t usually do. I turned off the video cam and went to the bedroom. She was sleeping very soundly, so I decided to let her sleep a little longer.

About ten minutes later while I was in the kitchen, I heard her make a noise. I heard her again as I walked to her. (I would have heard her get up if I hadn’t turned off the video cam.) I could tell she wasn’t in the bedroom and said, “Where are you?” She said, “Right here.” She was in the hallway walking toward our bedroom. She had gotten up but didn’t know where she was and must have wandered to one of our other bedrooms. She was frightened and said, “Help me. Help me.” I went into “comfort mode” and told her I could help her with anything she needed. She told me she didn’t know what to do and repeated “Help me.”

I took her to the bathroom and then back to our bedroom where I had laid out her clothes a little earlier. She continued to be frightened and repeated her plea for help numerous times. There were moments when she seemed to calm down. One of those occurred when I showed her a photo of her mother in the hallway outside our bedroom,  another as we walked through the family room. When we reached the kitchen, I gave her her morning meds. She didn’t know what to do with them. I explained and coached her step by step.

She was very unsure of herself as we went to the car. As you would expect, I put on some music that I thought she would like. I think she did, but she was very quiet all the way to the restaurant. I remained silent thinking that the music would do a better job calming her than I could.

She was very confused at the restaurant, at least until she had eaten most of her meal. I worked hard to show her the salmon on her plate. She couldn’t distinguish the salmon from the sweet potato fries. I gave up and used her fork to pick up a piece and fed it to her. After a couple of forksful, she fed herself. She enjoyed her meal. She even ate about half of the mixed vegetables. She rarely eats any of them. She was calm until it came time to get up from the booth and walk to the car. She was very insecure, actually frightened, and held on to me tightly.

We returned home about 2:00, and Kate rested in her recliner. She was in and out of sleep. At one point, she opened her eyes and lifted her arms toward the ceiling. It appeared that she was looking at something or someone. She smiled. Then she closed her eyes again. Moments later she opened them and looked uneasy. I got up, walked to her and held her hand. I said, “You looked frightened? Are you?” She nodded. I asked if she could tell me what was frightening her. She didn’t know. I told her I was here with her and would help her with anything she needed. She didn’t say anything but squeezed my hand, and I took a seat in the chair beside her.

She woke up a little while later. I asked if she was relaxed. She said she didn’t know. I asked if she was frightened. She didn’t know. Then I asked if she would like for me to read to her. She wasn’t sure about that either. I told her I would like to read something to her and picked up The Velveteen Rabbit and started reading. As I read, she kept saying “Huh” as I read something new. The more I read, the less she did this, but she never completely stopped. And I never stopped reading, I wasn’t entirely sure that she was enjoying what I was reading, but she didn’t show any sign of going back to sleep. Several times she responded appropriately to parts that were sad.

When I finished, I said, “Isn’t that a nice story?” She nodded. Then I asked if she was glad that I had read it. She smiled and said she did. It was clear that her mood had turned around. She became more animated as she looked out at the back yard where the wind was blowing through the trees and shrubbery. She kept pointing to things that she wanted me to see. As we looked through the sky lights, I commented on how fast the clouds were moving, and we watched as they drifted by from West to East. We must have watched and talked about what we were seeing for fifteen minutes before she took note of the poinsettias in the room. She was quite cheerful.

Then I went picked up a photo of her and her brother when they were about four and two and showed to her. I was pleased when she said, “That’s my brother.” She commented on his smile and then looked at her picture and said, “That’ me.”

I had put on a Chris Botti album a little earlier. The last song on the album is “What a Wonderful World.” It caught her attention, and we talked about the song and how much we liked it. She was again at ease. Reading, admiring the trees and shrubs, photos, and the music turned out to be the highlight of our day.

She was fine until we got ready to leave for dinner. Once again, she seemed afraid. She was distracted by her meal. It was a big serving, and she ate almost everything and seemed fine as we left for home.

At home, she worked puzzles for a few minutes before wanting to get ready for bed. That took a little more time than usual. She required more help from me. After she was in bed, I turned on a series of YouTube videos of Andre Rieu. She is lying down in bed listening to the music and seems content. I think the chances are good that we’ll be back to “normal” tomorrow, but one never knows.

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A Mixture of Happy and Sad

I am always glad to report the Happy Moments that Kate and I have. This is only the fourth day of the new year, but we’ve had a lot of them so far. At the same time, we are experiencing sad ones as well. I can’t say that we’ve had anything as serious as this past Monday when she was confused, frightened, and experiencing delusions off and on most of the day. She has, however, experienced some of the same things periodically all week. That has been accompanied by being tired and generally lethargic.

She is still responding positively to photo books as well as the flowers and photos in our family room but with somewhat less enthusiasm than in the past. She has also seemed more dependent on me. She wants my guidance on many things. She wants to do what is right, but she doesn’t know what that is. Increasingly, she asks me where to put her napkin. At least once this week, she couldn’t understand what I meant when I said she could put it on her lap and asked me to do it for her. She more regularly needs my help with toileting, washing her hands, brushing her teeth, and showering.

On the other hand, each of us enjoys being with the other. I have actually enjoyed not having a sitter twice during the holidays because both Christmas and New Years fell on a Wednesday, a day for the sitter. Yesterday, she was very tired when we got home from lunch. I was afraid she might not be as receptive to the sitter, but that wasn’t a problem at all. She really seems to have developed a comfort level with both of the sitters, especially Mary who comes on Wednesdays and Fridays and has been with us over two years. She does ask about me (where I am and when I will return) while I am gone. She also displays varying degrees of enthusiasm when I come back. Yesterday, she was especially happy to see me.

All in all, it seems like she has not been doing as well over the past week or so. I have noted before that mornings are her most difficult time. I find that understandable since she hasn’t had any external stimulation for eight to twelve hours. She usually recovers a short time after she is up. Now she seems to be having similar experiences in the afternoon when she rests. The other night she wanted to watch the news with me. I think it overwhelmed her brain. The next thing I knew she was having a delusion.

The last few times we have looked at her photo books, she has told me she is tired and needed to rest not too far into the album. When she is resting her mind wanders, and she imagines people and situations that I am supposed to know about. She says things like, “What time will she be there?” Or “Who else will be coming?” “Who are we meeting?” I try not to ask who because she always believes I know. I give her an answer knowing that she won’t remember what I said.

Music, whether on YouTube, or our own audio system is often good for her. I think that is because she can enjoy it passively. It doesn’t require her to try to understand or remember. She simply enjoys it. She does, however, frequently ask me who is singing. That happens a lot with the YouTube videos.

I take all of these things as signs that 2020 will be a very different year for us.

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An Example of Kate’s Insight

Kate and I had an unusually good time at lunch yesterday. I commented on how relaxed she looked. She said she was, and I told her I was as well. Then I said, “I think that’s because we didn’t have to rush to get here.” I went on to say that I like to be punctual and am least relaxed when I am pressed for time. I don’t remember exactly what she said, but here is the meaning. “I like it that when you are in a hurry. You try not to make me think you are.” She knows me pretty well. Alzheimer’s hasn’t taken that away.

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Lots of Happy Moments the Past Two Days

Life has a lot of twists and turns and highs and lows. As Kate’s Alzheimer’s progresses, I am more mindful of such variations. The good news is that we still have far more highs than lows. New Year’s Eve and New Year’s Day have been among the highs. As I’ve said before, that doesn’t mean her memory improved or that her confusion disappeared. It means that she has been in a good mood and that we have enjoyed ourselves to the fullest.

Both days were low-pressure ones. Except for our dinner reservations New Year’s Eve and our 12:30 lunch reservations yesterday, we didn’t have any time-specific obligations. That makes both of us more relaxed. After lunch yesterday, Kate rested on the sofa while I watched some of the Alabama/Michigan game. She rested about two hours and was asleep most of that time.These two days were a great way to bring in the new year. It reinforces my belief that we have been very fortunate.

In a post one year ago, I noted several significant changes that had occurred in 2018. Among those were starting to forget my name and hers, recognizing me as her husband, greater confusion (often forgetting our house and how to get around in it, the city in which we live), sleeping later in the morning that led to our typically going to lunch rather than to Panera, and greater dependence on me with things like toileting, showering, and dressing.

For the most part these are the same things that I would say about her changes in 2019. The difference is that everything is noticeably worse than before. The exception is sleeping. That has become more erratic. On the whole, she still sleeps later than she used to do; however, she isn’t consistent. Sometimes she gets up earlier. She routinely rests right after we get home from lunch. That normally lasts at least two hours. Until recently, she hasn’t slept much while resting. Now she seems to drift in and out of sleep. She does seem to be more tired than in the past. I believe that is a result of having to work harder to get through the day.

Two other changes are worth noting. One is her physical mobility. Getting into and out of chairs or up and down steps requires a lot of thought and effort on her part. It was during this year that I got a handicap placard for the card. I have only used it a couple of times, but I expect to use it more in the coming year. Most places we go I can find a parking place that is reasonably close to where we are going, and I want her to walk as much as she can. I am, however, much more sensitive to parking than I used to be. There are at least three restaurants that I would visit were it not for the difficulty getting in because of parking or stairs.

The other thing is her problem with speech. The past six months her loss of vocabulary became obvious. I am sure it has been diminishing gradually for a long time. I suspect most of that loss has been words that we don’t use very often. Now she is forgetting words that are in everyone’s daily vocabulary. In addition, it is much harder for her to express herself. She starts to say something and then says, “You know what I mean.” If I say that I don’t, she gets irritated with me.

As I said last year, I can’t predict what lies ahead in 2020. I only know that this is a progressive disease. She won’t be better. In fact, the last year has been one in which her decline has been more rapid. Her experience on Monday of this week when she was unable to make a lot of sense throughout the day may be a sign of things to come.

Next year at this time we will be looking at a move to a local continuing care retirement community. When I checked a couple of weeks ago, I learned that they are on schedule to be ready for occupancy in January 2021. That means I will soon need to begin making preparations for a move. When I made the commitment in May, I felt that it would not be a problem for Kate. Now I am beginning to wonder. She still likes our home here. Although she doesn’t know her way around the house, and except for mornings, she seems to have a comfort level being here. I think her confusion in the morning is because she wakes and doesn’t recognize where she is. If that continues, it should not make much difference where we are. In addition, a smaller place might actually be easier for her. I just don’t know, and I’m not going to worry about it now. We have taken everything a step a time since her diagnosis. That has involved many gradual changes along the way. I expect the changes this year to be more significant, but I feel I have a game plan that is working. In addition, I have the flexibility to shift gears as needed.

Having said that, I am now recognizing that life as we have known it for the past nine years is passing away. I am particularly mindful of the things that have dropped out of our lives in recent years – our last summer to host grandchildren, our last international trip, our last visits to Chautauqua, to Kate’s home in Fort Worth, to Texas to share Thanksgiving with our son and his family, and to Memphis for Christmas with our daughter and her family. I don’t expect this to have been my last Christmas and New Years with Kate, but I know that it won’t be the same next year. I confess to more than a bit of sadness at that thought, but I believe I will adapt this year in the same way I have done before. I’ll keep my focus on Kate’s happiness and celebrating what she can do as opposed to what she can’t. I am still amazed at how much she can enjoy life. She may well continue enjoy life through 2020. My intent is to stand by her as long as she can and thereafter.

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She Needs and Appreciates Me

I had just finished my walk and was getting ready to complete a blog post yesterday morning when I heard Kate’s voice over the video cam. I went to her. She said, “I am glad to see you.” I said, “I’m glad to see you.” Then I asked if there was anything I could do for her. She said, “Yes,” but she didn’t say what. She was pretty groggy. I asked if she would like to go to the bathroom. She said, “Not right now.” I said, “It sounds like you would like to rest some more.” She nodded. I started to say that I would be in the kitchen when she said, “Don’t leave me. I like you to be here.” I said, “How about my going to the kitchen and getting my things and coming back and sitting in the chair right here.” She that would be fine. When I returned, she thanked me for being with her and said, “You don’t have to say anything at all. You can if you want to.” She added, “You take good care of me. I don’t know how you do it?” It’s this kind of appreciation that gives me encouragement to do everything I can for her.