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.

Changes Abound

This has been a week when I feel I’ve had more to say than I’ve said. I’ve been busier with Kate, and a few holiday related tasks. In addition, I have been dealing with a few household issues, a leak in our pool, a leak in a pipe under the house, a toilet that needed fixing, and some minor electrical work. Perhaps more than anything else, I haven’t been exactly sure how to express what I want to say. It’s all wrapped up in a single word: change.

Haven’t I said that before? Yes. Maybe that’s why it’s hard for me to say it again in a way that distinguishes what is going on now from the past. I’ve devoted a little more time this week to paying attention and thinking about that rather than writing. I haven’t considered this a waste of time at all. I’ve read about authors who have made a point of saying that the “thinking” part of writing for them is the most valuable part. With that in mind, let me tell you about some of the things that are going.

Kate  more frequently expresses insecurity about what to do when she wakes up, when brushing teeth and bathing, when we are in restaurants. She was especially uneasy during our Christmas dinner at Ruth’s Chris. That may have related to the somewhat more formal nature of the room, the service, and the fact that this is not a restaurant we often frequent. It had been several years since our previous visit. That was with the staff at the office and a time when her Alzheimer’s affected her much less than it does today. Whatever the cause, she was never fully at ease.

Her morning confusion seems to be more severe now. On several occasions, she was so frightened that she hasn’t wanted to get out of bed. Each time I have been able to help her recover, but it takes longer than the past. That happened day before yesterday. She didn’t know “anything.” I talked with her very slowly and calmly. She didn’t know who I was, but she trusted me. I was eager to get her up so that we could have lunch together before the sitter arrived, but I knew that rushing her would make things worse.

I put on some soothing music at a very low volume, and we talked for fifteen minutes or so. Though I talked about her parents and our children, nothing rang a bell. She became comfortable talking with me, but she was still confused. Then I decided it was time for something more upbeat. I remembered that several weeks ago she had recognized and liked the song “A Bushel and a Peck.” I played it. The minute she heard it she laughed. We were making progress. I was streaming the song from a playlist of Doris Day music, so we heard a couple of other old songs we both recognized. Then I switched to the soundtrack of My Fair Lady. By the time we got to the third track, I suggested we go to lunch. She didn’t jump right up, but she did let me ease her up, and we got ready. She was fine.

She struggles more with her clothes than in the past. Sometimes she wants to be independent, and I let her do what she can. It isn’t long, however, before she asks for my help.

Her vocabulary is diminishing. She often says, “I don’t know how to say this.” She can’t pull up the words that express what she wants to say. That is more than a vocabulary problem. It is also a problem organizing her thoughts.

Along with that she sometimes fails to recognize common objects. Ironically, that almost always happens with her iPad. When she sees it, she asks, “What’s this?” Last night I handed her toothbrush to her and didn’t know what it was or what it was for. I explained how she should use it. At Panera this morning, she looked at a napkin and asked what it was.

I have no way of measuring this, but it seems like she does not know my name or our relationship for a longer time each day. On the other hand, she almost always feels comfortable with me. She trusts me. It is when she first wakes in the morning that she is least likely to know my name or relationship. She does, however, know to call me in the morning. Most of the time, she just says, “Hey.” Interestingly, there are times during the day when she needs something and calls me by name. This seems to be a example of a simple “stimulus/response” behavior. She occasionally asks my name shortly after using it.

Our Christmas Day conversation when she couldn’t remember anything about her mother was a striking first. She has always retained strong and very positive feelings for her mother. I thought that would be the last memory to weaken. Of course, that didn’t last. I haven’t seen any similar signs since then.

There are more times like this when she seems to be in a fog. These seem to occur most frequently in the morning when she wakes or during the day after resting a while. It is like her brain closes down while resting or sleeping. Then when she opens her eyes and looks around, she doesn’t recognize anything or in some cases, she has hallucinations. After resting in her recliner a while the other day, she opened her eyes and pointed to something across the room and said, ““It’s been a long time, you know.” <pause>. Then she pointed to the ceiling and said, “Hey sit down.  All of you.” (Chuckles)

She talks in her sleep more. Sometimes I talk back to her, and she speaks to me while still appearing to be asleep.

Her vision is worse. I think that accounts for some of her uneasiness when walking from the car to a restaurant and back as well as her difficulty getting seated or going up and down curbs. She frequently fails to eat food on her plate because she hasn’t seen it. Occasionally, I walk to another room after we have been talking. When I walk in moments later, she doesn’t recognize me and asks, “Where did he go?” If I say, “Who,” she usually says, “The other guy. The one I was talking to.”

She loses me easily. Sometimes that occurs when we are within a few feet of one another. The other night at a nearby pizza place, I saw that there was just one remaining booth and walked ahead of her to claim it before someone else. When I looked around she was looking for me. We looked at each other, but she didn’t recognize me until I walked closer. She was frightened that she had lost me.

Surprisingly, she seems to be rather good at seeing small spots. It is not unusual for her to eat everything on her plate and then look for tiny specks of remaining food that she picks up with her finger.

Her sleeping pattern is more erratic. She had a long period of time when she slept regularly until 11:00 or after or when I woke her. More recently, she went through a period when she would wake up early and go to the bathroom then go back to bed. I’m not sure there is a pattern anymore.

She has more problems with eating. She is particularly confused when she has both a fork and a spoon. If she has soup, she usually begins to eat it with a fork. Then I show her the spoon. After she uses the spoon, she uses it for everything else.

She also uses soups and condiments as sauces for other parts of her meal. For example, we eat lunch at Bluefin on Saturday. They prepare excellent grilled salmon that she likes. It is not unusual for her to dip her salmon in the ketchup that accompanies her sweet potato fries. I brought some lobster bisque home from lunch on Christmas along with Our sweet potato casserole. She used the bisque as a dip for the casserole.

As she was finishing her meal last night, she poured all of the remaining ice and tea onto her plate with a few pieces of chicken and began to eat the dozen or so flat, square pieces of ice along with her chicken. She didn’t leave a speck of anything on her plate or the two cups with her side dishes of strawberries and applesauce.

She is beginning to forget how to take her pills. Sometimes when I hand her a pill and a glass of water, she asks what to do with it. She occasionally puts the pill in her mouth, drinks the water, and doesn’t swallow the pill. When I hand her the next one, she says, “What do I do with this one?” I have to watch her more carefully than in the past. She can take one pill and forget the others.

Yes, life is changing. There are more things that demand my attention. Having said that, we still have a good time together. I’ll say more about that in another post.

A Christmas Afternoon Conversation

Kate and I had just returned from a late Christmas lunch around 4:30. We went to the family room, and Kate asked what she could do. I told her I could read something to her or she might like to look at one of her family photo books. She was unsure. I picked up a photo book of her father’s family and suggested we go through it together. I handed it to her and let her look for a few minutes while I brushed my teeth.

When I returned, she was looking at the first page. She told me she didn’t know anything. I told her I would help her. For about ten minutes we went through a few pages with my commentary on the people and places. She said she was interested but this was too much for her. She couldn’t absorb or remember anything. I suggested that it might be a good time for her to take a break and just rest. She said, “Let’s just do a couple of pages.” I agreed, but she stopped me again to say it was too much. This time she accepted my suggestion to rest. We closed the book and began an interesting and touching conversation that I was able to record. I have transcribed the beginning portion below.

Richard:         So you don’t remember anything right now.

Kate:               No. <pause> No. I don’t.

Richard:         Do you remember anything about your mother?

Kate:               No.

Richard:         What about your daddy?

Kate:               You know, right now, I just can’t even (Trails off)  This is so much to remember. It’s just too much right now.

Richard:         You know what you do remember though, I think? You can tell me if I’m wrong. You remember that you liked your mother very much. Do you remember that?

Kate:               No.

Richard:         You don’t?

Kate:               But that would be wonderful thing.

Richard          Do you remember what a nice and great woman she was?

Kate:               I don’t know much about her. I hardly know anything about her. I know I’ve been told, but I <slight pause> I mean, I must have, must have, but I have no (Trails off)

Richard:         No memory.

Kate:               This is why I don’t want to go too fast, and  I’d rather just go (Trails off)

Richard:         We don’t have to hurry at all. There is no reason to rush.

Kate:               Well, see, uh, that’s, that’s good.

Richard:         There are a couple of things I’d like you to know from me.

Kate:               All right. If I could tell you, I will.

Richard:         No, I just want to tell you something, and it’s the way I, it’s something I feel. One is that I love you very much.

Kate:               I love you too.

Richard:         Second is I want you to know you can depend on me.

Kate:               I think so too.

Richard:         I will help you with anything you need – anytime, and I believe that you know that I will.

Kate:               Oh, I know. Definitely.

Richard:         We’ve always cared for each other.

Kate:               Yes, we have.

Richard:         And we always will.

Kate:               That’s right too.

Richard:         You know, it takes us back to our wedding vows, doesn’t it? We said we would always stick together. For better or for worse.

Kate:               And we have.

Richard:         And, fortunately, its been mostly, almost entirely, the better for us. Hasn’t it? Haven’t we been fortunate?

Kate:               Oh, yes, yes, yes. I don’t remember much of it, but, you know, I’ve never had an anybody that . . . No <pause> no problems, they were all. I mean I don’t remember in (Trails off)

Richard:         You’re right. We just have had good times. We enjoyed the places we have lived. We enjoyed the people we’ve met. We’ve enjoyed our experiences in our work and going to school. You know, one of the things you enjoyed most was being a church librarian. It was one of the most fulfilling things (for you), and, you know, you did a good job. You helped so many. . . You’ve led a fulfilling life.

Life is Still Good, But Changing

Yesterday morning, I replied to a Twitter friend who posted the following message.

Today is my fourth year anniversary since my diagnosis of Posterior Cortical Atrophy which is a variant of Alzheimer’s Disease. It affects my vision more than memory. In 4 years I’ve done really well, achieved a lot and still going strong. Power to me.

I congratulated her, and she sent the following reply.

Thank you, Richard. People think it’s strange for me to celebrate each anniversary, but it’s my way of coping and surviving.

I admire the way she is coping with her disease. It doesn’t mean she is free of all the frustrations that accompany dementia, but she is working to make the best of it. I have found that approach personally beneficial and have tried to capture the joy that Kate and I experience. There are times when I feel I may not fully convey the reality of the rough patches we also experience, and I want to make clear that we are now facing the most significant challenges that have occurred since her diagnosis. I have mentioned each of them at sometime in the past, but all of them are becoming more common.

NOTE: I completed this part of the post just before 11:00 yesterday morning when I went to the bedroom to waken Kate for lunch. My intention was to finish it with examples of some of the rough spots. Our experience yesterday led me to use it as an example. I wrote about that in the following section when we returned home from lunch about 2:30.

2019-12-18 (3:00 p.m. EST)

Another Recovery Following a Rough Start

It’s been about a year and a half since Kate first showed signs of anxiety or panic related to not knowing where she is, who she is, or what to do. Thus far I have been able to relieve her, but each time this happens I wonder how long I will be successful. From the beginning, simply trying to comfort her, rather than giving her information, has seemed to be the key factor in each recovery.

This morning (now yesterday) was no exception. About 10:45, I put on some gentle Christmas music to wake her. Fifteen minutes later, I went in to see if she might be ready to get up. She was awake, but it didn’t take long to discover she was confused and very uneasy. She wasn’t cheerful, and she didn’t greet me at all. I told her I would like to take her to lunch. She shook her head to say no. When I asked if I could help her, she gave me the same response.

I told her she looked frightened and asked if she were. She nodded affirmatively. I told her I would like to help her. I could tell that she didn’t recognize me and decided not to push her but just talk to her very gently. It wasn’t long before I said, “I don’t think you remember me.” She confirmed that. Then I gave her my name and told her I had I had known her a long time and could help her with any questions. I also asked if she felt she could trust me. She said yes. I said, “Other times when you have felt this way, you have felt better after you got up and dressed.” She wasn’t ready. I asked if she would like me to read something. She did, and I got Charlotte’s Web and read a couple of chapters. When I finished, I got up from my chair. Her eyes were open, and she looked at me. I spoke to her. She didn’t respond at all. She looked very strange, like she was asleep with her eyes open. Then her eyes closed, and she was asleep. This was the first time I had ever seen her like this. I let her sleep a little longer and then went back to wake her. When I returned, I asked if she thought she could get up for lunch. She asked about her clothes. I told her I had them ready for her.

She was still uneasy as she got out of bed. She didn’t want my help although she did want to hold my hand as we walked to the bathroom. She took a long time brushing her teeth. She got irritated with me when I tried to help her. I pulled back and let her take her time. She didn’t want help dressing and was irritated when I tried to help. I apologized for pushing her. I feel sure she didn’t recognize me and felt uneasy about dressing in front of me. Ultimately, she needed my help and accepted it; however, I didn’t take over. I let her do as much as she could.

When she was dressed and walked into the family room, her mood quickly changed. She stopped to look at the poinsettias and the back yard and commented on how beautiful things were. We walked to the kitchen where she took her morning meds. She was just fine and has remained that way since. We had a nice lunch, and she has rested a good bit since we returned home. I am hopeful that the evening will go well, but I know that we may not be so fortunate in days ahead. In the meantime, I am happy that we experienced a good recovery today.

NOTE: I finished the section above about 3:45. I started the following part last night at 9:20 and finished this morning.

At 4:30, I saw that Kate had opened her eyes. She seemed to have rested comfortably for almost two hours. I know she didn’t sleep that long because I saw her open her eyes and look around several times and spoke with her a couple of times. This time I asked her if she would like me to read something to her. She wasn’t enthusiastic and said, “What would you read?” I mentioned The Velveteen Rabbit, but she wasn’t interested. I mentioned Charlotte’s Web, and she accepted that. I read about twenty minutes. She didn’t respond at all. I went over to her chair and kneeled down beside her and asked if she would like me to take her to dinner. I encountered the same experience we had had that morning. Her eyes were open, but she didn’t respond at all. Again, it looked like she was sleeping with her eyes open. Shortly thereafter, her eyes closed. I waited a few minutes. Then I asked if she would like to go to dinner. She asked me to go without her. I continued to talk softly to her and told her that I didn’t want to eat without her. She agreed to go.

I was sure by the way she related to me that she didn’t know who I was. Before we left, she confirmed my suspicions when she asked who I was. On the way to dinner she asked my name. When I told her, she said, “Nice to meet you, Richard. Do you know my name?” After I told her, she tried to repeat it and failed. She asked me again. She tried again. We went through this several times, and she ended up saying her name about three times in a row and expressing confidence that she now might remember. We had a pleasant time, but she knew neither my name nor our relationship and was a little more formal or distant that usual.

On the way home, she asked where we were going. I told her we were going home. She wanted to know what that meant. When I told her we lived in the same house, she said, “But where will you be?” I told her we would be in the same bedroom. She was very uncomfortable with that. I promised her that I would not create a problem and that we had lived together a long time. She still seemed a bit puzzled.

When we got home, she didn’t recognize the house. Once inside, however, she must have felt a little more comfortable because she started to behave the way she always does. I am not sure that she knew me as her husband, but she was perfectly comfortable as I got her ready for bed. It could have been that she was totally dependent on me as to what she should do and simply had to trust me.

I stayed up another hour after she went to bed. When I got in bed, she was glad. She was perfectly comfortable with me. She was like she is any other night. Did she know me? I don’t know if she remembered my name or our relationship. We had just finished a full day during which she didn’t. That is a new record.

The good news is that the day ended on a happy note and that she was as comfortable with me as she has ever been. Despite challenges like these, we focus heavily on the good times we have, and I intend for us to continue doing so as long as we can. At the same time, I can’t deny the reality of Alzheimer’s. It takes its greatest toll on Kate, but that, in turn, has an impact on me. I remain optimistic about how I will adapt as the disease progresses, but the most difficult part remains watching her lose so much of her ability to survive on her own. It is especially hard in those moments when she suffers as she did off and on yesterday.

Morning Crisis

Yesterday, like a number of days recently, Kate was up at 7:30. That meant I didn’t get my normal walk, nor did I have time to upload a new post. This morning I was up at 5:20. I thought this would be a good opportunity to write a post about an experience we had last night. My plans changed quickly. I was about to walk out of the bedroom when I noticed that Kate was awake. I walked over to the bed to let her know I was going to the kitchen to fix my breakfast. When I reached the bed beside her, I recognized the look on her face. I said, “Are you afraid?” She nodded. I told her I could help her and that she was going to be all right? Then I said, “Would you like me to stay with you?” She said, “Oh, yes.”

She wanted to go to the bathroom. As I helped her up, she said, “You’re very nice to me. You’re the only one I can talk to.” I wasn’t sure if she knew who I was and said, “My name is Richard.” She said, “I know that. <pause> What’s your name?”

After using the toilet, she wanted to brush her teeth. I asked if she were still afraid. She said she was. I asked what she was afraid of. She said, “I don’t know. I don’t know what to do?” She talked a couple of minutes about that and said things like “I don’t know what’s going to happen to all of us.” “I just want to get out of here. I don’t really mean that, but . . .” (She didn’t finish.) “Thank you for helping me. You’re the only one I can talk to.”

I assured her that I could help her, that she could depend on me. I said, “Right now, I think you need to get back in bed and rest. We’re going to have a very nice day.” I started to leave for the kitchen for my computer, and she said, “Please stay with me.” I told her I was just getting my things from the kitchen and would be right back.

As you might expect, I turned on some soft soothing music and sat in the chair beside the bed. It wasn’t long before she was asleep.” I began to think about leaving to fix my breakfast, when she awoke and saw me. She had a smile on her face and said, “You’re here. How nice.” She seemed like herself, but now I feel I should stay a while longer. At least for now, the crisis is over.

A Terrific Morning

Yesterday morning before Kate was up, I posted a tweet that said, “Feeling grateful today. At Stage 7 #Alzheimers, Kate often fails to remember my name or hers, doesn’t know her way around the house, needs help with everything, and is losing her ability to speak, HOWEVER, we still enjoy life and each other.”

I thought a while before posting it for two reasons. First, I don’t want people to think we have escaped all the negative aspects of Alzheimer’s. We haven’t. Second, I don’t want other caregivers whose situations are much different than ours to think they must be doing something wrong or they would also be enjoying life the way we have. From the start, I have wanted to provide an accurate description of our lives. It seems like being able to enjoy life while living with such a devastating disease needs to be told.

After posting the tweet, I realized that my grateful feeling could be easily followed by something that would bring me down from my perch. That could have happened. It is not unusual for us to experience such swings from high to low and back again. I am happy to say that our morning turned out to be a confirmation of our good times.

Kate was up at 7:30, in a cheerful mood, and ready for the day. We were at Panera before 8:30 and back home before 9:30. I wasn’t surprised that she wanted to rest. While she did that, I did a few household chores.

At 10:00, she had rested enough. I asked if she would like me to read a little of Charlotte’s Web. We spent the next hour reading. We both had fun, but I found my voice was getting a bit hoarse. For the better part of the day yesterday and the day before she didn’t recognize our house as ours. I’m not sure whose she thought it was. I suggested that I show her around the house. She was ready.

We spent the next hour walking first through the kitchen, then the dining room, through the living room, and back to the family room. Along the way we made numerous stops as I told her the stories behind many of the pictures, furniture, and other items some of which had come from her parents’ house. She was enthralled. As I expected, she was particularly excited about the variety of things that had been her parents. You might think that because we had so many things of her parents and that I talked about our having them in our home she would have come to realize that she was in our home; however, I never got a sense that she recognized it as ours. In fact, three or four times she asked, “Who owns this house?” Each time I told her that we did, but it never seemed to stick.

Once again, we had had an experience that can be looked on with sadness – sadness that she doesn’t recognize her own home or the many things that should be treasured memories for her. I am just glad that with my help she can experience them in the moment. Yesterday morning was a very Happy Moment for her and for me. I am grateful.

Our Thanksgiving

Like so many other things, Thanksgiving has come and gone. Despite the rough beginning in the early morning hours, it was a nice day though it was bitter-sweet. There was no denying the dramatic change in Kate since last year when we were in Texas with our son’s family. I predicted then that it might be our last Thanksgiving with family, and it was.

I’m not at all sure what next year will be like, but I know Kate’s changes will not be for the better. Kate is unable to grasp this, but I am convinced by the things she says that she recognizes her condition is not good. She was essentially saying that when I went in to get her up for lunch yesterday morning. I said, “It’s Thanksgiving, and I’m thankful that I have you.” She reached up and grabbed both of my arms and said, “And I am thankful for you.” I said, “I know that.” She said, with emphasis and with a slightly sad expression on her face, “I want you to know I really mean it. I mean it.” She knows she couldn’t make it without my help and is very appreciative. I continue to be amazed at her self-awareness.

Since we eat out for lunch and dinner, finding a place to eat on Thanksgiving is a challenge. We did, however, have a good Thanksgiving meal at Ruth’s Chris. For a long time, Kate has been able to get along quite well without anyone’s suspecting she has Alzheimer’s. That is one of the big changes that has occurred in recent months. It was evident yesterday.

As the hostess walked us to our table, she was walking rather quickly. Kate is always very slow. The hostesses at our regular places are well aware and take their time. I decided to let this one know. We hadn’t gone far when I looked behind me and saw that Kate had stopped to talk with a woman at another table. I walked back and discovered that she was complimenting the woman on her hair. She was overdoing it, and I know the woman thought it somewhat strange. When we got to our table, we went through something with which I am accustomed. I am sure that our hostess was not. She was, of course, supposed to wait until we were seated and hand us our menus. It took what must have seemed to her an interminable amount of time for Kate to realize which seat was hers and to be seated. I was glad I had informed our hostess. She was very understanding.

After Kate’s making a few initial comments to our server, I handed her one of my Alzheimer’s cards. I was glad that I had although she might have guessed anyway. Both when I ordered and when the food arrived, Kate asked, “What is that?” She was referring to the sweet potato casserole. She also asked the same question when I ordered a filet for us to split. I think she was confused about the whole situation. We are not regulars at Ruth’s Chris, and it had an air of formality that we don’t experience at most other restaurants. She was very concerned about doing something wrong and asked my advice a number of times. That is not something unusual, but the way she asked sounded like she was more uneasy about this situation.

Despite these things, the lunch went quite well. There were two other couples seated at the tables beside us, but the sound was quite muffled. We felt a certain measure of privacy even though the restaurant was packed. We had a good conversation and talked about the many things for which we are thankful.

Once we were home, Kate wanted to rest and did so for about an hour before getting up. I asked if she would like me to read The Velveteen Rabbit to her. She did. She was more enthusiastic this time than before. Once again, I was also touched. It is so good to see her enjoy herself in this way.

It didn’t take long to finish. Then I asked if she would like me to read some of the Diary of Anne Frank. In spite of her previous interest, I was a little afraid this would sound like too much for her. I am glad to say I was wrong. We read another 20 pages. As I did before, I asked if she wanted me to continue after each entry. We only stopped because it was time for dinner.

It was another good day for us. The meaning of this holiday did not fall on deaf ears. Each of us experienced the spirit of Thanksgiving.

Mornings Are Unpredictable.

Predicting what Kate will be like when she wakes in the morning is challenging. Some mornings she is cheerful. Other days she seems disturbed. Recently we had experienced several especially good days in a row. That came to an end yesterday.

I went into the bedroom about 10:15 when I noticed that it looked like she might be getting up. She was awake, but I quickly recognized that it was one of those times when she didn’t know anything. Her mind seemed to be a complete blank. I spoke to her very calmly and explained that I could help her. I began to tell her a little about her mother and father and mentioned that we had some photo books I could show her. She didn’t want to get out of bed, so I brought in her “Big Sister Album.” I showed her a few pictures, but the light was too dim for her to see well as she was still lying in bed.

We went through our usual routine of her asking and my telling her my name and hers, but nothing sounded familiar. Very early I told her I was her husband. She didn’t take to that, and I said, “Just let me be your friend.” That worked.

She told me she didn’t know what to do. I suggested that she get up and go to the bathroom and then get dressed. She surprised me by taking my suggestion. She was a bit insecure as we headed to the bathroom and held my hand all the way. Once there, she depended on me to tell her what to do.

When we finished in the bathroom, we went back to the bedroom where I proceeded to help her dress. She had everything on but her shoes when she wanted to lie down. About twenty minutes later, I told her I would like to show her something that I thought she would like. She got up without a problem. She put her shoes on, and we walked to the hallway outside our bedroom where I showed her pictures of her mother and grandmother. She wasn’t as interested as usual but did enjoy seeing her mother’s photo. Things were getting better. Several times she asked, “Who are you?” I gave her my name without indicating our relationship. That seemed to suffice.

Once in the family room, I picked up the “Big Sister Album” and showed her the cover photo of her and her brother. She sat down in a chair to look at it. She took interest in the photos of the little girl but didn’t know who she was. I pointed at one in which she had taken special interest and said, “That’s you.” She said, “What’s my name?” I told her. She was elated and said, “Now I have a name?” It was a special moment of joy for both of us.

A few minutes later, the sitter arrived. I met her in the garage and explained what had been going on. She asked if she should still take her to lunch. I told her I thought that would actually be helpful for her. Then we walked into the family room. I said, “Look who’s here. Your friend Cindy, and she is going to take you to lunch.” Kate received her enthusiastically and said a loud “Yippee!” I was relieved and left for Rotary. Kate didn’t express any reservations about my leaving. She was happy, and so was I.


This Morning

At 7:35 this morning, I glanced at the iPad connected to the video cam and noticed that Kate was getting out of bed. She was already on her feet when I reached her. She smiled at me, and I said, “Looks like I got here just in time.” She said, “Yes, I’m glad to see you.” She wanted to go to the bathroom. I took her hand, and we headed that way. She said, “You’ve done this before.” I said, “Yes, I have.”

She was a little unsteady on her feet; otherwise she seemed perfectly normal and recognized exactly who I was. I had to explain what she was supposed to do when we got to the bathroom. She almost always looks at the toilet as though she doesn’t know what it is for.

I took her back to bed and pulled the covers over her. She thanked me. I told her I would be in the kitchen and to call me if she needed anything. She said, “What’s your name?” I told her and said, “And what’s your name?” She looked at me as though I should know, and I said, “Kate.” She smiled and said, “That’s right.” I am sure that she hadn’t remembered but was covering herself by waiting for me to tell her. She still has at least some ability to hide her memory problem though she almost always asks me her name. She never seems bothered by asking me the names of other people even those closest to her like her children and her mother and father.

We Still Have Happy Moments

In my last post I mentioned a sad moment Kate and I had experienced when she was so disturbed about the way she looks. I’d like to balance that with a couple of happy moments. We still have them, and they seem more important now than ever before. I think about “moments” more lately because it seems harder for me to describe a full day in a single word.

Two times in the past few days we have had an especially good time looking through her family photo books. Both of those occurred after her afternoon rest. In each case, I took the initiative of suggesting we sit down side by side and look at one. I make a point of that because she often looks at the cover of one of her books, but she doesn’t spend much time with them by herself. I think it must be that she doesn’t recognize the people, at least most of them, and she doesn’t have the ability to recall or imagine anything about the pictures or the people in them. She needs someone to give her specific names and information that provides the context for what her eyes see.

As it is for other activities we share together, I have as much fun going through the photo books as she does. Of course, a significant aspect of the pleasure for me is seeing her eyes light up and hearing her enthusiasm as we look at each photo. She continues to comment on people’s smiles and their eyes. Her primary interest appears to be in the mood of each person. I don’t recall her mentioning anything about clothes that people wore or anything else. She does say good things about her family as a group. Her strongest feelings are for her parents, especially her mother, but she expresses those mostly when she looks at some of their framed pictures around the house.

I find these moments a good substitute for our afternoon trips to  Barnes & Noble. We rarely go there now. When we finish, it is about time for dinner. It sets a nice tone to our relationship that extends until bedtime. That remains the most predictable good time of the day. I think that is because neither one of us feels any pressure. It’s a time when we just relax together.

Yesterday Kate was in a good mood when she got up, and it lasted all day. At lunch we had another happy moment. Kate was unusually talkative. I can’t begin to remember all the things she said. A lot of it involved how fortunate she and I have been. She was upbeat about everything.

There was a sad moment, however, when the server stopped at our table and said something nice to Kate. After she left, Kate commented on that. She specifically noted that the server had talked to her and that people usually talk to me. I have noticed the same thing. She didn’t seem disturbed about it. I think there are two things that account for that. One is that people don’t know what to say. The other is that Kate is slow to respond. That makes it hard for her to play an active role in a conversation with three or more people.  The conversation then drifts to one between the others and me.  Maybe that is why conversations like the one we had yesterday mean so much. She is relaxed and can be herself.

Last night we had dinner with a couple we know from our music nights at Casa Bella. We arrived first, and Kate already seemed like she needed to prepare herself. As she often does when it is just the two of us, she picked up the menu. She quickly found that she couldn’t read it and asked me what she should get. I explained that she usually gets either the Tortelloni alla Stephania or the Tortelloni alla Panna. I told her I would order for her and that she had the Stephania last week, so she might like the alla Panna this week. She tried several times to pronounce it.

About that time, our friends arrived. As soon as they were seated, Kate asked their names. She tried to repeat them back and was able to do so after a couple of tries. Of course, she forgot them immediately, so she asked again several times back to back before stopping.

Then she gave her attention to what she should order. I told her I thought she would like the Tortelloni alla Panna. She tried unsuccessfully to pronounce it. Then she asked Lisa. She and Lisa worked on the pronunciation a few times. Fortunately, the server came for our order a few minutes later, and I gave her our orders. Kate was off the hook. She must have felt a sense of relief to have that hurdle behind her.

She really wanted to be a part of the conversation, but it was too hard for her. Lisa is a fast talker. Ben speaks softly. At first, she kept asking each of them to repeat things that she didn’t understand. After a while, she just gave up. Because it was such a challenge for Kate, I thought this was likely to be one of the last times we get together. When we said goodbye, I asked Kate how she had enjoyed the evening. She said she enjoyed it.  She didn’t seem bothered in any way. Nevertheless, I believe situations like this may become even more difficult in the future. I will certainly stop them if that happens. Until then, I think it is good for both of us to have the additional stimulation of being with other people.

Experiences like this make our happy moments together even more important. I am optimistic that we still have a lot of them in the days ahead whether it is just the two of us or with others.