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.

Alzheimer’s Doesn’t Know It’s a Holiday, But We Do.

Kate and I talk a lot about the many things for which we are grateful. We’ll do more of that today. Let me say first that I am grateful to those of you who take time to read my often rambling accounts of our lives. I hope it provides an accurate glimpse of what “Living with Alzheimer’s” is like for us and that you may be gaining a little insight into the world of Alzheimer’s. The overriding message for us is how well we have gotten along. That easily claims first place among the things for which I feel most fortunate. I only wish that could be true for everyone who lives with this disease, but I am very mindful that others face far greater challenges than we have.

I am grateful for the kindness of family, friends and acquaintances who provide support, often without realizing it. I have also been touched by those who serve us in restaurants and customers in places we visit. Just this week I took Kate to the restroom at lunch. I’m always a little concerned in these situations because she has on several occasions locked a door to the stall or the restroom itself and been unable to open it. Sometimes she doesn’t know where to go once she is in the restroom or how to find the exit door. That day I opened the door and peaked in to see if anyone else might be in there. A lady was washing her hands. I pointed Kate in the direction of the stall and told her I would be right outside the door. It wasn’t long before the door opened and the lady who had been washing her hands invited me in. She told me she was a nurse and would stay with Kate. That wasn’t the first time people have helped in that situation. Little gestures like that have made the road smoother for us, at least emotionally.

It is a beautiful day. The sun is shining, and the today’s temperature will be in the low 60s. I look forward to this day with Kate. It will be the first we celebrate alone. Now don’t feel sorry for us. We will certainly miss being with family, but it will be easier on both of us that we are not traveling or hosting this year. I have an increasing recognition that our time together is limited, and I treasure the good times that we have when it is just the two of us.

Now let me segue to another aspect of our lives. Although we have many “Happy Moments,” they vacillate with more trying ones. Thus far, we have been able to handle each one of those. That includes one we had early this morning.

At 3:00, Kate said, “How do I get inside?” I said, “You’re inside right now. You’re in your own bed.” She wasn’t buying that. She asked again. I said told her I would show her but that it was the middle of the night and thought it would be better to do that in the morning. That wasn’t of any help. Then I told her I would show her. The first stop was the bathroom. Then we walked hand-in-hand through the bedroom, down the hallway outside our room, into the family room and kitchen, stopping in the laundry room. During our walk I tried to comfort her. She kept asking if we were going inside. I assured her that I was taking her inside. I turned her around and we walked back to our bedroom where I helped her into bed.

As I pulled the covers over her, she said, “You’re not going to leave me, are you?” I told her I would never leave her and that I would be right there on the other side of her. When I turned around to walk to the other side of the bed, she must have thought I was leaving. She said, “Don’t leave me.” She seemed very frightened. That didn’t stop immediately. I got into bed, moved close to her, and put my arms around her. She gradually felt at ease. By that time it was about 4:10. She was quiet until 4:30 when she asked again not to leave her. I assured her I wouldn’t, and I didn’t hear anything more from her. I think I went to sleep pretty shortly after that. I know I slept until 6:50 which is unusually late for me, but I know I needed it.

My best wishes for a Happy Thanksgiving to each of you.

Another Success with Reading

Having been successful with The Giving Tree and The Velveteen Rabbit, I decided to try another book that I bought at the same time, Anne Frank: The Diary of a Young Girl. I knew this could be a more challenging read for Kate but thought it was a worth a chance. I tried it Sunday evening after dinner.

I began by telling her a little about the book and that we had visited the place where Anne Frank and her family had hidden for two years. She was interested from the start. I am sure this was a book that she had recommended many times to her students when she was a librarian, but, of course, has no memory of it now.

When I finished the first entry, I asked if she would like to stop or if she wanted me to read some more. She wanted me to continue reading. After each entry, I asked if she wanted me to go on. We read twenty-five pages before I suggested we stop for the night and pick it up later. I was quite surprised she retained her interest for so long. Once again, I was encouraged about my adding reading as a source of pleasure for her.

The Velveteen Rabbit

One of the major themes running through “Living with Alzheimer’s” is change and adaptation. That has been continuous since Kate’s diagnosis. Of course, it really started before that, but I can’t pinpoint a specific date. I can for the diagnosis, so I always use it. At first, our lives changed very little. The primary difference was a focus on the bad news and how we were going to handle it.

Over time, we dropped many things that we had done in the past. Most recently, that has involved Kate’s difficulty working jigsaw puzzles on her iPad. For several years that has taken up 6-8 hours a day. That is now less than an average of an hour a day. This past week there were three days when she didn’t use it at all.

That has put me in the position of creating more activity for her. The sitters and I have been doing that with the aid of her family photo books. That is going well, but I felt the need for something else.  She tries reading magazines, but she doesn’t see well enough. Since she enjoys my reading the text that accompanies the photo books, I began to think about reading other things to her. Several things increased my motivation. One of my Twitter friends reads to her mother and said her mother enjoys it. I also have a colleague at the office who read to her mother in the latter stages of her life. It meant a lot to both of them.

In addition, our Rotary club has recently adopted a new project that involves placing children’s books in public places frequented by children. It made me think of buying several children’s books and trying them out with Kate. Two weeks ago, I took Kate with me to Barnes & Noble to browse the children’s collection. It was right after lunch, a time when she almost always wants to rest. I didn’t have much time to do any serious looking.

Last week, I had a conversation about reading to Kate with my colleague. She mentioned The Velveteen Rabbit and The Giving Tree as good possibilities. I went back to Barnes & Noble on Wednesday and looked for them along with other possibilities. They have a pretty large collection, but I didn’t see either book. The next day I checked Amazon and got them along with two other books.

Prior to their arrival on Friday, I looked on some of our book shelves to see what I might find. I saw a book by Erma Bombeck, Family: The Ties that Bind . . .and Gag! I read the two short introductory chapters to her Friday morning. In her humorous way, she first relates what her own birth family was like when she was growing up. Then she describes her present (present being some time ago) family as they take their annual Christmas photo. It’s a funny contrast of the generations. I wasn’t sure how Kate would react, but she enjoyed it, and I plan to read more at another time.

Sunday morning she was up a little earlier than usual. I didn’t want to go to Panera for a muffin and the quickly go to lunch, and Andriana’s wasn’t going to be open for almost an hour. I didn’t want her to feel my reading children’s books to her was, well, too “childish.” I explained about our Rotary project and that she might help me decide if the books I had bought would be suitable for me to give to our project. She, of course, was happy to do that. My first experiment was reading The Giving Tree. It didn’t take long for me to discover that she liked it. She audibly expressed her feelings as I read. I was encouraged by her reaction.

We still had plenty of time before we needed to leave for lunch. I picked up The Velveteen Rabbit and read it. This was a blockbuster. She was touched the whole way and in tears before I got to the end. I admit that I was touched as well, especially by her response, and shed a tear or two myself.

When I finished reading, I put the book down in my lap. We were seated side-by-side on the sofa. She picked it up and started to look through it from the beginning. She looked at the title page and the page of illustrations. I hadn’t paid much attention to the illustrations as I read, so we looked at them. Then I suggested we go to lunch. She held the book up to her chest with both arms around it and asked if she could take the book with us. I told her she could. She said, “Should I take it into the restaurant?” I said it would probably be better to leave it in the car. Then she decided it was best to leave it home. I mentioned that we could read it again if she would like. She said she did.

It was a beautiful experience for both of us. I was hoping she might enjoy my reading to her since she has enjoyed my reading from her photo books, but I wasn’t at all sure she would understand the stories well enough to appreciate them. I feel sure that she missed a lot, but it was clear that her intuitive skills were working. She was clearly moved. Her reaction encourages me to try more. Wouldn’t it be nice if her love for reading that seemed to have been lost could be rekindled in this way? How appropriate for someone who was a lifelong reader until Alzheimer’s entered our lives.

Friday Lunch Conversation

In my previous post I commented on how talkative Kate was this past week. We had another good conversation on Friday. It was an ordinary lunch at Applebee’s, but it was a time when we both felt the impact of the words we exchanged. We talked about how much each means to the other. We briefly touched on the subject of re-marrying if one of us died. At this point, that is something neither of us can imagine. Each of us expressed our feelings about the other and the difference that made in our lives.

Kate asked me about a number of things. She was soon overwhelmed with information and asked me to stop. She said, “You know I won’t be able to remember. I will have to ask you again.” I told her I would always be there to answer any of her questions. I also reminded her of a nickname she had given me in the early years after her diagnosis – “MM” for “My Memory.” It was no surprise that she hadn’t remembered. I would have been surprised if she had.

It was a moment when each of us spoke very candidly. She was clear about not remembering. I was equally clear in my commitment to be with her whatever the future holds. That commitment is an important source of strength for me. I believe it keeps me from dwelling on the sad aspects of living with Alzheimer’s. There is no doubt that caregiving is stressful, but it has its rewards. I think of it as a privilege to care for Kate during this last chapter of her life. Overall, I still believe things are going “remarkably well.”

Ups and Downs This Week, Mostly Ups

It’s been a busy week. My daily schedule has been interrupted more frequently than in the past. That means I’ve been less regular with my posts. Several times I have started one and not been able to finish because of something else I needed to do. Kate has required more attention than usual, but that doesn’t explain everything. The other things have involved household chores.

Tuesday was one of those days about which I didn’t say anything. I was especially interested in writing about the events of the day as a follow up to Monday when she had a rough beginning. Fortunately, I jotted down a few notes so that I can cover the highlights.

The day started like the day before. Her brain seemed to be “blank.” She was very dependent on me; however, she didn’t appear to be disturbed the way she was on Monday.

I don’t know that my own behavior played a role in the way she responded. I do know that I tried to be more careful in waking her than I had done the previous day. I played a full 20 minutes of relaxing music before going to the bedroom to wake her. When I entered the bedroom, she was awake. I said hello and sat down on the bed beside her. This wasn’t planned or intentional, but I think it may have played a role in conveying a relaxed morning, not a moment when I was eager to get her up.

She didn’t know her name or mine nor our relationship. When I said I was her husband, she couldn’t accept it. As I have done on other occasions, I suggested she think of me as a friend. She liked that. I mentioned a shower, but she didn’t want it. I didn’t push.

I told her I loved her. Though a bit unclear, she responded with what she meant to be “A Bushel and a Peck.” I pulled it up on the audio system, and we sang it together several times. Then I suggested she get up so I could take her to lunch. She got up easily. I had started to wake her with plenty of time for her to take a shower. When she didn’t shower, we were left us with additional time to get ready.

As a result, we got to lunch earlier than usual. She was very talkative and initiated a conversation as though we had never met before. She asked me what I did for a living. I explained that I had started out as a college professor. She wanted to know what I taught. When I told her sociology and social psychology, she asked me to explain. I did, and she said that sounded interesting. I went on to say I ended up with my own market research company. She didn’t know what market research is. I explained that, and she also thought that was interesting.

When I finished, I said, “Why don’t you tell me about yourself.” I knew this might put her on the spot but thought my question wasn’t especially threatening. She handled it well and said, “There really isn’t much to tell.” I told her I knew a lot about her. Then I recounted her academic background and teaching career. I pointed out that she had been a good student and had earned two masters degrees. Then I told her about her volunteer career as our church librarian. She was quite interested and added her own comments.

It had been almost a year and a half since she had had a cortisone shot for the arthritis in her knee. Over the past couple of months, she has complained about it periodically, so we went directly from the restaurant to the orthopedic clinic. She was very childlike throughout the visit but handled herself well. We waited in the lobby for about fifteen minutes. Assuming we might have to wait a while, I took along her “Big Sister Album.” I thought that would occupy her for a longer period of time than her iPad. She enjoyed looking at it and made a lot of comments. There were only a couple of others in the room. I am sure they wondered a bit as they heard me identify all the people including Kate herself as she responded much like a child listening to a parent read a book.

We didn’t wait any longer after going back to one of the examining rooms. We met with two different people. Kate didn’t understand a lot of what was said and asked for clarification. I helped interpret what they said. She never understood, but she was satisfied. As we left, she thanked everyone including those in the waiting room.

The most important thing I should say about the day was that it was one of the nicest days we have had in a long time. I think that relates directly to her mood. She was very happy and quite at ease. Her memory wasn’t any better nor was she any less confused about things like whether we were in Texas or Tennessee, but she enjoyed herself. I couldn’t understand everything she said in our conversations, but she was surprisingly sharp in terms of her understanding about the importance of values and the role of parents in teaching them to their children. She has lost so much of her rational ability that I really enjoy hearing her express her opinions, beliefs, feelings, and values that remain intact. It keeps me in touch with the Kate I have always known.

Recently, especially this week, our lives have vacillated between highs and lows. The highs have been very special, and we experienced them every day. They far outweigh the lows. I know greater challenges are on the way. I am counting on the Happy Moments to sustain us.

Another Morning Surprise

It was just a few days ago that I reported on the unpredictability of our mornings. That continued this today. Kate was awake, or woke up, when I got up at 5:50. I thought she might want to go to the bathroom, but she declined. I had been in the bathroom only a few minutes when she opened the door. I walked over to assist her to the toilet but found that it wasn’t the bathroom she wanted. She said, “Is she all right?” I did what I should know not to do. I said, “Who?” She gave me a dirty look. Often she says, “You know who.”, but just as often she gives me a look that communicates the same message. Fortunately, she asked “Is she all right?” several more times. That gave me a chance to say the right thing. Each time I said, “She is fine.” That seemed to provide her with momentary relief, but she continued to be concerned. During the next few minutes, she made other comments like “Are you sure she is all right?”  “I love her so much.” And “Could I see her?” I feel sure she must have been thinking about her mother but never found out.

When we got back to bed, I asked if she would like me to stay with her. Of course, the answer was yes. Unlike the other recent times when she has wanted me to stay, I hadn’t already dressed. I put on an album of very soothing music and got back in bed with her. I stayed there until just before 7:00. She was still awake but relaxed.

I knew she was likely to go to sleep and expect I wouldn’t hear from her until I woke her at 10:45. I was wrong again. I saw her on the video cam at 8:10. She was sitting up. When I reached her, she was wide awake and ready to get dressed. This was another day when she wanted me to take her “home.” That has become more frequent in the past few weeks. I told her I would. Strangely, she wasn’t persistent this time. She mentioned going home a couple of other times but seemed to have forgotten before we left for Panera. We got here about 9:15. She is just now finishing her muffin. I suspect it won’t be long before she will be ready to leave. How long depends on how well she is doing with her puzzles.

Concerned About Not Doing What She Believes She Should

When Kate got in the shower yesterday morning, she got upset. At first, she was using the soap. I told her to use it. Then she got very teary and said , “Will you still love me?” I told her I loved her from the day the day we met and would always love her. She gradually calmed down .

As I was helping her into the car after lunch, she said she wanted to tell me something. Then she said, “You have told me a lot of things, but I know I won’t remember them. Promise me you won’t be mad at me?” I assured her that I wouldn’t get mad and was happy to tell her as many times as she needs to ask.  She said she knew I wouldn’t but some people would. She said, “I know you must get tired of me asking you all the time.” I found her concern about my reaction strange. I felt almost like she was afraid of me. It was hard for me to imagine that because it is so out of keeping with our relationship.

She went on to say something else but stumbled on the words. My interpretation was that she couldn’t understand why she has so many problems. I don’t know that I am correct though I do know this is an ongoing concern of hers. Earlier at Panera she wondered why she does so many “stupid things” when she is so smart. Periodically she talks about being smart. I think that is because she is aware of so many things she does that seem to contradict that. I don’t usually feel sad, but this is one of the things that does it. I don’t like to see her suffer.

This Morning at Panera

Kate was up this morning at 7:00 to go to the bathroom. She took a shower and then went back to bed. She was up in time for us to make a trip to Panera. As we got out of the car, she said, “Help me. Why do I do stupid things when I’m so (stumbles on the word) I said, “You’re smart.” She said, “Tell people that when I do something stupid.”

We walked in the front door, and she said, “What’s the name of this place?” I said, “Panera.” She repeated it as we were about to walk by a woman working on her laptop. Kate stopped at her table and asked, “Do you know the name of this place?” The woman nodded. Kate started to say the name but forgot it and turned to me. I told her again, and she told the woman. She said this in a childlike way but also very outgoing.

After I had gotten our drinks and her muffin, I took a seat across the table from her. She was unusually talkative. She said, “What’s your name?” I told her. Then she said, “What do people call me when I am with you?”  A short time later she asked again and then said, “Am I your nephew?” When I told her I wasn’t, she said, “You’re not my ____?” I said, “Yes.” She frowned. She brought up our relationship several other times. At least two times she was happy about our being married. Other times she wasn’t.

While there, she asked my name almost as many times as she asks Frank Sinatra’s name at Andriana’s each Sunday.

At one point, she said, “I’m learning my colors.” Then she looked at her gloves and said, “Look. They’re black.” I pointed to the lid of her cup and asked, “What color is this?” She wasn’t sure. I told her it was blue. The lid has a small plastic part on the top of the lid that slides over the hole. I pointed to it and said, “If the lid is blue, what color is this?” She hesitated a moment. Then she said, “Light blue.” I told her she was right, and she was as excited as a child might be.

Throughout our conversation she made references to growing up as though. Once she mentioned her age. I said, “How old are you?” She thought a minute and said, “Thirty or forty. Forty. I’m more mature than thirty.”

We left after she finished her muffin. We walked by a table of women who were there for a meeting of their book club. We know one of them from church and spoke to them briefly. Kate was very talkative. She would have continued talking longer if I hadn’t encouraged her to move on.

As we got in the car, she said, “What would I say if I were introducing you to someone?” I said, “This is my husband Richard.” She didn’t want to accept that I was her husband. I said, “You could say, ‘This is my very good friend, Richard.’” She wanted to drop the word “very” and just say good friend.

On the way home, she talked about our marriage and mentioned my name at least twice. She also commented on my being nice to her. She said, “You’re nice to me. You take care of me.” “You have taught me a lot of things. You’ve taught me to be polite.” Again this was said the way a little child might have said it.

When we walked into the house, she asked my name. It’s a good example of how quickly her brain works and then doesn’t work. It had been no more than two or thee minutes since she had called me Richard. Continue reading “This Morning at Panera”

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.