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“Happy Moments” at Unexpected Times

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

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

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

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

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

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

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

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

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

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

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

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

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

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A Nice Day with a Sad Ending

I am often worried that I will have a problem getting Kate up on days when the sitter comes or when we have some other commitment. Yesterday was one of those. I had planned to attend a luncheon sponsored by the health foundation on whose board I had served. It had been a while since I had attended any of their events and was eager to be there. Cindy, Kate’s Monday sitter, had an opening yesterday, so it was all arranged.

To top it off, getting Kate up was no problem at all. She woke up on her own around 8:30. and wanted me to take her home. That meant getting her ready was easy. We drove over to Panera where I got her a muffin and brought her home shortly before Cindy arrived. As usual, Kate was tired and got on the sofa to rest. She was wide awake when Cindy got here. She greeted her warmly and showed no reluctance to my leaving.

I enjoyed the luncheon. I got to see a good number of people I hadn’t seen in a while and sat by someone I hadn’t known and got acquainted with her. It was a therapeutic outing for me.

Kate was still resting on the sofa when I got home. Cindy said she hadn’t moved since I left. She also went to be early.

I watched some of the coverage of the New Hampshire primary and went to bed later. I know that Kate was asleep at least off and on before then. When I got in bed, I discovered that she was very uneasy. We began what turned out to be a long conversation. She wanted me to help her and asked where she was, who she was, who I was, and who her parents were. She repeatedly asked the same questions over and over again for almost an hour. As quickly as I gave my answers, she forgot them. I spoke to her very calmly and suggested that I would be able to show her some photos that might help her understand. She didn’t want to look at anything then. Throughout our conversation she was very comfortable with me even though she didn’t recognize our relationship. I told her we had been together a long time, and she asked if I were her husband. When I told her, she didn’t express surprise. It was a simple acceptance of what I had said. At one point, she told me that these were important things that she ought to know. I agreed and told her to count on me to answer all her questions.

It was a sad situation and one I couldn’t solve. It wasn’t like some other incidents in which she was frightened or desperately worried about why she didn’t know these things, but she was concerned and felt she should know. Finally, we both thought we should get some sleep, and we did.

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Another Good Day and a Reminder of the Kindness of Strangers

As I had hoped, we got our week off to a good start. I didn’t have to struggle with Kate to get her up. When I checked on her around 10:30, she was awake and quite cheerful. We had no trouble getting to lunch and back by the time the sitter arrived at 1:00. Not only that, but Kate was happy to see Cindy and didn’t express any reluctance about my leaving. She was tired and getting ready to rest. When I returned home, she was still resting. Cindy said she hadn’t moved from the sofa the entire time I was gone. She was glad to see me.

We went out for our regular Mexican meal at Chalupas where we enjoyed our meal and conversation. As she does more often these days, she wanted me to sit beside her in the booth rather than across the way I normally do. This was another occasion when we were the recipients of the kindness of strangers. We were earlier than usual, and there were only a couple of other parties there when we arrived. One of them was a young couple seated across the room from us. The man was African American and the young lady with him was Asian. They were almost twenty feet apart, and we never spoke. They left about fifteen minutes before we did. They walked past us, and the man said, “Have a good night.” When it was time for our check, our server told us it was taken care of. I was surprised and thought the restaurant was treating us. That’s when he said it was paid for by the couple who just left.

That is the third time we have had that experience in the past few months. In the other two cases, however, I knew or had a pretty good idea of who the people were. They were people who are well aware of Kate’s Alzheimer’s. This time it was a couple we had never seen before, and our server said he had never seen them in the restaurant before.

I wonder what prompted them to do this. I do know that Kate is very slow, and it took a long time for me to help her take off her sweater and then to be seated. The couple may have noticed and thought Kate was handicapped in some way. Our server suggested that not many couples sit side-by-side in a booth unless they are with another couple. Maybe they were taken with an old couple who are still in love. Whatever it was, it made quite an impression on us.

The rest of our evening went well as it usually does. I am glad that we can have days like this even at this late stage of Kate’s Alzheimer’s.

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Is It Really Possible to Have a Good Day During the Late Stage of Alzheimer’s?

I am frequently concerned that I paint too rosy a picture of what living with Alzheimer’s is like for us. We, especially Kate, experience challenges, frustration, and stress. I don’t know how we could live with Alzheimer’s any other way; however, I believe it is important to communicate the good things that we can still enjoy. Yes, we can even have a “Good Day” at this stage of the disease. I always feel the need to reiterate that doesn’t necessarily mean that Kate’s memory is better or that she isn’t confused. I mean that we have enjoyed, not just a moment, but the day.

Yesterday was one of those. Several things may have accounted for that. She awoke in a good mood. In addition, we were not rushed at all. Her insecurity is also increasing. She seemed more dependent than usual. Finally, we talked a lot about our relationship and our love for each other.

She was also up early again, and we went to Panera and returned home for her to rest an hour before leaving for lunch. It was a very leisurely morning. We went to the Sunset Café for lunch. It’s a cut above most of the other restaurants we visit and they always save a corner table in the bar for us. It’s a quiet place and seems a little more private because the bar is quite small, only three other tables, and not very active at lunch. The setting makes it easy to engage in conversation. Kate and I took advantage of that. We have been eating there for several years and have gotten to know the hostesses, several servers, and shift managers, all of whom stop by our table to say hello. It provides the kind of social occasion Kate can easily handle.

When we returned home, she wanted to rest and did so for almost three hours before we got ready for dinner at Casa Bella. They were having a repeat of the Broadway program we heard last week, so I thought it might be nice to eat  in the front section of the restaurant away from the music. This is where we had eaten most often before they started their music nights. We have shared happy and sad moments there over the years. Last night was one of the happy ones.

We talked almost entirely about our relationship, our families, and how much we have to be grateful for. We also dealt with how we would feel if we lost the other through death. We do this periodically. Both of us feel we would like to die first so as not to live without the other. I feel good when we are able to talk about these things because I often think about her death and know that the odds of my living without her are significantly higher than the other way around. Of course, she doesn’t know that which magnifies her fear of my dying first and leaving her alone. She is very insecure now. She recognizes how difficult it is for her to do anything on her own.

Some might take this kind of conversation to be sad. It is, but there is another side to it. When we talk like this, we also feel very close. Each of us recognizes the depth of our love for the other in a way that doesn’t occur in the course of our daily routine. Of course, we approach this topic from different perspectives. I have a better idea of what is ahead for her. On the other hand, she is keenly aware that something is wrong with her as well as her dependency on me. I believe that when we have discussions like this we are uniting in a way that strengthens each of us. Her trust in me serves to reinforce my desire to care for her, and she is comforted by my assurances that I will be with her all the way.

It could have been an ordinary day. We didn’t do anything extraordinary. But it was a day in which we focused heavily on what we mean to each other. That made it special. It was a “Good Day.”

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Nine Years Ago Today

Most people remember specific dates that represent something significant that happened in their lives. I have a number of those, our wedding date, Kate’s birthday along with those of our children, grandchildren, parents, and siblings. We celebrate dates like these, but there are also dates when something happened that we don’t think of celebrating. January 21, 2011, is that kind of date for me. Nine years ago today, Kate’s doctor delivered the news that she has Alzheimer’s.

At the time, the news was devastating, but we made a commitment to make the most of the quality time remaining to us. I had no idea how long that would last. Here we are nine years later and still able to enjoy life and each other. I am very grateful for that. I can honestly say that these years have been among the best of our marriage.

Today, however, I feel other emotions as well. They are more like the way ones I felt when she received the diagnosis. I am just as intent on making the most of our time together, but at this last stage of her disease, I am more than bit apprehensive. I know that we won’t continue to live the way we have the past nine years. We are at the beginning of the stage people imagine when they think of Alzheimer’s. Our quality time is going to be more limited. This doesn’t mean our experience of “Happy Moments” will cease. It is just that they will be different. Even in the past few weeks, I see the challenges increasing. I mentioned a couple of them in my previous post. Another one occurred yesterday.

Kate was just as tired as the previous morning, perhaps even more so. Off and on for an hour and a half, I worked to gently wake her before my efforts met with success. I began with some soft music and gradually changed to more lively music. The first two two or three times I went to check on her, she was sleeping so soundly that she didn’t hear me at all. That has never happened before. My reward was that she smiled when she finally responded the last time I tried.

She was slow to get up and wanted to rest a little longer after she was partially dressed. While she rested, we talked. She repeatedly asked my name and where she was. This was a time when she didn’t remember me as her husband, but she spoke very comfortably with me. She didn’t express any great surprise when I told her we were married, but that didn’t stop her from asking my name.

She was in a good humor and kidded me a good bit. While lying in bed, she wanted us to sing something. I sang Edelweiss, but she didn’t sing along because she couldn’t remember the words. She wanted me to sing it again. I did and then played it on our audio system. That way I could give her the words just before each phrase. She enjoys singing.  It was an unusual and pleasant way to start our day.

It was our day for the sitter. When she arrived, Kate wondered who was at the door. I told her it was “Cindy, your friend who takes you to lunch on Monday.” She didn’t remember her but was very nonchalant in her response. She greeted Cindy warmly and never hesitated about my leaving with her. I didn’t have Rotary yesterday and almost canceled the sitter, but I thought I could use the time. I have also wanted to strengthen the bond between the two of them. I have had the distinct impression that Kate favors the sitter who comes on Wednesday and Friday and has been with since our second week with sitters. I believe that continuity helps and hope we don’t ever lose her.

The rest of our day went well. Kate was especially taken with some YouTube music videos I played for her last night. That took the place of her iPad on which she had started to work puzzles but lost interest. It was nice to see her enjoying herself. She was still awake when I got in bed. We chatted briefly and expressed our love for each other.

I make a point of mentioning the challenges of getting her up, her confusion and failure to remember my name and our relationship along with the good time we had once she was up. This is a good snapshot of what “Living with Alzheimer’s” is like for us. As long as she is happy, we will continue to live well. I hope I am wrong about the changes I believe will occur in the coming year. Despite my expectations, I am very grateful for the good times we have had in the past and feel sure we will have more in the future. We have, indeed, been fortunate.

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Ken and Virginia’s Visit

Today is the last day we have with Kate’s brother and his wife. The visit has gone well. We have focused on being together. Except a short drive through the continuing care retirement community that we will be moving to next year, we haven’t done anything special apart from eating out. I was interested in learning more about Ken and Virginia’s move to a similar community this past November. They seem to have adapted well. In their case, it involved a change of cities. They are now closer to family. We have had time for conversation.

I was especially pleased when Kate and Ken had an hour or so to look through a book he had recently given her. It contains a large collection of photos of their hometown of Fort Worth. Virginia and I adjourned to the living room, so we couldn’t hear their conversation. The fact that they spent so much time was a good sign that Kate enjoyed it. This was right after returning home from lunch yesterday. That is a time she normally rests. They finally stopped because she was tired. Ken mentioned that she also began cry as he read and told her about several of the photos. One involved the deaths of a basketball team many years ago.

It helps that Virginia and Ken are sensitive to Kate’s need to rest and have gone back to their hotel an hour or two each day. They understand that she has to work hard to keep up with a group. We have followed our daily routine though she has gotten to bed later at night. I think it is good for her to have a little extra stimulation. I feel very strongly that she and Ken should make the most of this visit. The next one is likely to be very different.

The only concern I have had is maintaining Kate’s involvement in our conversation. Virginia and I are the talkers in the group, and we have dominated. There is a certain inevitability to this. The nature of the conversation has to be rather limited for Kate. I also recognize that she is approaching a time when it won’t be possible for her to join in a conversation no matter what the rest of us do; however, I don’t want her to feel excluded from the group.

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Cheerful Days

In many ways the past two days were like a lot of other days we have. The difference was that Kate was cheerful all day long. Both days she awoke early and was in a good mood.

As she got out of bed on Tuesday, she called me by name. I took her to the bathroom. Afterward, she wanted to go back to bed. I told her I would be in the kitchen if she needed me. I added that I would stay if she preferred. She told me it would be all right if I left; however, she looked as though she wanted me to stay. I told I would be glad to bring my things to the bedroom and sit in the chair beside her. That made her happy.

Instead of leaving when she fell asleep, I stayed until it was time to get her up. That worked well because she woke up periodically and saw that I was there. Several times we chatted briefly. When it was time to get her up, I asked if she was ready. She said yes. I didn’t rush her at all. I told her I would get some clothes for her. It was another fifteen minutes before I told her I had her clothes. She got up very easily. I the the gradual process helped.

It wasn’t long before the sitter arrived. I hadn’t mentioned that I was leaving and thought she might be uneasy as I left. That turned out not to be a problem. She greeted Cindy with a hug and wasn’t phased when I told her I would be going to Rotary. The rest of the day went smoothly as well.

Yesterday was Kate’s birthday, and I was hoping she might have another good day. My wish was granted. She never showed any excitement or interest in its being her birthday; however, she did appreciate the emails, cards, and calls she received. She was especially touched by two cards. One of those was from our daughter. Kate was in tears as I read it to her. The other was from our twin grandsons. She was taken by the cards design. It had a pop-up when she opened it. She was fascinated by it and looked at it for a long time.

The celebration continued at dinner last night. After I had given the server our order, Kate noticed shrimp on the menu. The server, whom I had told about her birthday, asked Kate if she liked shrimp. When Kate said she did, the server said, “I’ll treat you to a shrimp cocktail.” Kate has always loved that. Although her eyesight complicated eating it, last night was no exception. Several times she dipped the tail of the shrimp in the sauce and took a bite.

The day ended with phone calls from our children and Kate’s brother and his wife who will be here for a visit tomorrow. That should be good for her as well.

Our experience does not mean there was any improvement in Kate’s memory or her confusion. For example, yesterday afternoon while she was getting her hair done, I went to the ATM at the bank across the parking lot. The stylist told me later that while I was gone, Kate said, “Where is my, uh, boyfriend?”

As we prepared to leave home for dinner, Kate said, “Let’s get out of here. I wanna go home.” There isn’t a way to stop the fundamental symptoms of Alzheimer’s, but, thankfully, we are still able to enjoy ourselves. I am grateful for that.

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A Good Start and Finish

Our routine was altered a bit yesterday. Kate called for me about 9:00. She was smiling when I reached her bedside. She wanted to go to the bathroom. She was confused but did not seem to be bothered. She just wanted my help and accepted it through the whole bathroom routine including showering and getting dressed. It was early enough to get her to Panera for a muffin and get back home just after 11:00. That worked out well because I had asked a church friend to take her to lunch. I had a lunch meeting and needed to leave by 11:30. Kate was tired and wanted to rest a while. I explained to our friend that she had gotten up early and might want to rest a little longer before they went to lunch.

When I got home, Kate was still resting. The friend said that she had tried to get her interested in going to lunch, but she didn’t want to. The friend said to Kate, “I think you wanted to wait for Richard.” Kate nodded. I was surprised because this is someone that Kate likes very much. In fact, everybody I know likes her. My only explanation is that while resting, she completely blanked on who the friend was after being excited about having lunch with her. I know that happens with me. It still surprises me when we have been talking about our  marriage and children and then says, “Who are you?”

It was after 2:00, and I took her to Chick-fil-A for a chicken sandwich. It turned out that she had a hair appointment shortly thereafter. As the stylist walked her to the front to meet me, Kate asked where I was. I stood up to greet her. She was greatly relieved to see me. I have become a security blanket for her.

She rested at home for an hour before we went to dinner at Casa Bella for jazz night. We sat at a table for twelve. She must have felt a little left out. She tried hard to participate. Then she retreated for the remainder of the dinner. The music was good, but neither of us was taken with the singers themselves.

When we got home, it was time for bed. Soft music was playing, and we were both relaxed and happy.

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More of the Same

I had just passed the halfway point in my walk at 7:35 yesterday morning when I saw that Kate was about to get up. I went to the bedroom and discovered that this was another morning of the same kind of confusion and anxiety that I have seen more of in the past ten days. It seems like it’s becoming a pattern. She looked very confused. I am sure she didn’t know me, but I didn’t say anything that might have prompted her to tell me.

I told her I was there to help her. She said, “I don’t know what to do.” I said, “Usually you want to go to the bathroom.” She asked why, and I tried, unsuccessfully, to explain. Then I asked her to come with me. She agreed to go with me to the bathroom although she had a look of apprehension on her face. As on other mornings, she periodically said, “Help me. Please, help me.” I assured her that I would. She was very dependent on me to help her with everything. From the bathroom, I took her back to bed. She said, “I wish you could stay with me.” I told her I would be happy to stay. I went to the kitchen to get my things and returned to the chair right beside her side of the bed. She was asleep very quickly, and I returned to my walk.

The rest of the day went well. She was happy to see the sitter and happy to see me when I got home. She did say she wanted to go home. I told her I would take her. We went to dinner. She never said another word about going home.

She watched the news with me but looked rather bored. I asked if she would like to get ready for bed. She did. I put on a YouTube video of a concert of music from My Fair Lady. She enjoyed it. As usual, she was still awake an hour after the concert but was very much at ease. We ended the day on a happy note.

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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.