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A Rare Experience

Kate and I have been married fifty-six years, and I can’t recall a time when we have sat down to breakfast together except when traveling or the few occasions when she has attended a YMCA breakfast with me. The reason is simple. I like breakfast, and she doesn’t. In addition, I have always gotten up earlier than she does. When she was working, she used to have some juice and yogurt just before leaving the house. She continued this after retiring until we started going to Panera for a muffin. Since she started sleeping late almost a year and a half ago, she hasn’t been eating breakfast regularly because we go directly to lunch.

I am not expecting that routine to change, but yesterday morning was quite different. She wanted to get up to go to the bathroom at 5:30. She was back in bed in twenty minutes. I stayed up and got ready for the day. As I was about to dish up my scrambled eggs, I looked at the video cam and saw that she was about to get out of bed. I went to the bedroom and found that she was wide awake and quite cheerful. I assumed she wanted to go to the bathroom again, but she said, “Do we have anything to eat?” I told her I had some scrambled eggs and some granola but no milk. She wanted the eggs. That was quite a surprise, I can’t remember the last time she had scrambled eggs. The only times I recall her having eggs at all is when we have been out for breakfast, and then it is usually pastries, pancakes or Eggs Benedict.

I walked her to the kitchen, got out two plates, and split the eggs between us. She enjoyed every bite and chatted too. I didn’t notice any of her usual grogginess. Having given her half of my breakfast, I needed a small dry serving of granola, but it was a special occasion. It’s a rare day when we have breakfast together.

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Two Happy Moments

As Kate continues to decline, I expect that we will experience more sad moments than we have had in the past. I hope that I will be able to say that we still have happy ones as well. That is certainly true right now. Two days ago, for example, she got up early. She seemed to be in a good mood. She did ask my name and our relationship multiple times before she got dressed. Each time I mentioned that I was her husband she was surprised but accepting.

When she was dressed, she asked if she could lie down. I told her she could and then said, “I love you.” As I said it, I remembered the old song “I Love You a Bushel and a Peck.” When I mentioned it to her, she also remembered it. Then she said, “We could sing it together.” I took out my phone and searched for the song. Then I played it through our audio system. We forgot most of the lyrics, so I pulled them up on my phone. We must have sung the song five or six times. It may have been a little silly, but it was fun. Kate really got a kick out of it. I think it also made it easier for her to get up since her already good mood got better. I just know that right after our singing, I said, “Now, I’d like to take you to lunch.” She got right up.

We had another Happy Moment at dinner that night. We were having dinner at Chalupas when I mentioned how nice it was that we enjoy the simple pleasure of being together. She picked up on that and began a conversation about how fortunate we are in so many ways. From there, she gravitated to talking about the people who are not as fortunate as we are in our marriage and many other aspects of our lives.

I enjoy hearing her speak so naturally. She didn’t seem to have a care in the world. She is often concerned about what she should or shouldn’t do or say. She isn’t that way a lot of the time, but she does frequently ask me to watch her or to keep her from doing “something wrong.” She knows she does a lot of things that aren’t right. It’s good to see her at moments when doesn’t have those concerns. They make for quite a few Happy Moments for both of us.

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Thinking about Travel

Following all our trips, I consider whether or not we are likely to take others in the future. I am glad to say that our overnight trip to Nashville this past weekend went well. I think Kate should be able to continue this kind of trip a while longer. The key is not the travel itself. It seems like the distance is not a problem for her. I believe it involves the type of situations in which we find ourselves that is more relevant.

For the most part, the kind of things we did were very similar to those we experience at home. Kate wasn’t under any additional pressure. We arrived at our hotel on Saturday with enough time for her to rest about an hour before going to dinner. The restaurant was right behind the hotel. We could easily walk the short distance. We went early, 5:30, and were back in our room by 7:15. It was a pleasant evening. Kate was tired and relaxed in bed while I watched the LSU/Alabama football game.

Kate was able to take it easy Sunday morning. She was awake for about thirty minutes around 10:00. I turned on the TV and watched “Meet the Press.” I woke her at 11:00 to get ready for lunch. She didn’t want to get up, but I was able to use the excuse that we needed to check out of our room. That worked, and we arrived for lunch at 11:45.

We ate at Maggiano’s which is less than a five-minute drive from our hotel. I used valet parking at the mall where the restaurant is located. I did the same thing last time and found that much better for Kate. She can’t remember the restaurant by name or even recognize that we have been here for lunch during each of our last four or five visits, but I like to think she has a comfort level being there. The manager remembers us and always drops by our table to greet us.

From there we drove to see Ellen and were there a full two hours. Although she appeared to have declined a little since our previous visit with her, the visit went well. We arrived in Knoxville around six and stopped at Panera for a quick bite to eat before going home. A couple from our church came in shortly after our food was ready. We invited them to sit with us. We had a nice visit with them and then went home.

The weekend had gone well. It was an easy one for Kate. That is the way these visits to see Ellen usually go. I think we will continue to visit her for a while longer but recognize that both Kate and Ellen are declining. I suspect that when our visits end it won’t be a result of the challenges of travel but their respective health issues that are the cause.

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“On the Road Again”

“Real” travel is a thing of the past for Kate and me, but we occasionally take one-nighters. I am writing from Nashville where we will visit our friend, Ellen, this afternoon. She has been in memory care for almost two years. We have visited her about every 4-6 weeks since here stroke four years ago this past August except for a couple of times when she was in the hospital or rehab. Sometimes we also visit with other friends who live here. We’re just visiting Ellen on this trip. As we have done for the past 6-8 months, we stayed in a hotel overnight. That makes it a little easier than going and coming in one day. Besides that, we have a nice meal at one of several restaurants we like. It makes a nice change from our regular routine.

We got off to a good start when Kate woke up early. After a trip to the bathroom, she took a shower and returned to bed. I let her rest until 11:30 when I got her up for lunch. We had a relaxed lunch at Bluefish before leaving town and had an especially good time. Kate said something that led into a discussion about religion. It wasn’t a deep discussion, but she talked about the contribution that make religion makes in support of programs designed to help others.

We had an unusually good time at dinner. We ate at a very nice Italian restaurant. I am grateful that we can still have experiences like this. At some point, I suspect we will discontinue eating out. In the meantime, we both enjoy it and living as normal a life as we can at this stage. I gave out two of my Alzheimer’s cards, one to the hostess who seated us and another to our server.

There were only a few things that might have given clues to her diagnosis. The first was getting to our table and getting seated. She performs both tasks with great care. That’s because she is unsure of what to do. We had to go up one step to the area where our table was located. That adds an extra challenge for her. Getting into her seat presents two problems. One is knowing which chair is hers. That happens even though I pull out the chair, stand there to help her, and tell her “This is your chair.” That seems a simple thing but not to a person with dementia.  The other issue is getting into the chair. She is as cautious with that as going up and down steps.

Along with our bread, we were served a bowl of white beans in olive oil. She prefers butter with her bread, but she asked about the beans. I put a few on her bread plate. She started eating them with her fingers. She liked them. She took the bowl and used the spoon that came with them to eat them as she would a bowl of soup.

The manager stopped by our table near the end of our meal. Kate told him “We come here a lot and really liked the meal.” He looked at her a bit strangely. I suspect he wondered why he didn’t remember her. The answer was clear. This was only the second time we have had dinner there. The first time would have been almost a year ago. We have eaten there for lunch, but that would have been more than five years ago.

Kate went to bed early but not to sleep. She has been up twice this morning to go to the bathroom, once at 5:00 and once at 8:00. She is sleeping soundly as I write this post. I’ll get her up in time to make our noon reservations for lunch. We should be at Ellen’s by 2:00 and head back to Knoxville around 4:00.

For years, I left Kate for a short time to eat breakfast in the dining room or area. I remember preparing signs with large lettering telling her where I was and that I would return soon. I gave that up about a year ago when I no longer felt comfortable leaving here for even a short period of time. Now I just order breakfast from room service. It’s not quite the same, but I like to eat right after getting up. Kate likes to sleep later. With room service we both get what we want though I much prefer breakfast in the dining room to our dark hotel room. Like so many other things, this is something with which I can adapt.

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Dreams, Delusions and Hallucinations

Here’s another post in which I will never be able to capture the details. Let me start and see where it goes but understand you will not be getting the whole story.

Kate has talked in her sleep off and on during her life with Alzheimer’s. In the early years, the focus was almost always her teaching and library career. Most, if not all these experiences, involved her speaking to students. She was very deliberate in what she was telling them. Her memories of those days faded away long ago, but she continued her talking just in different situations.

Yesterday morning at 3:00 she had another “dream” experience similar to one she had a week or two ago. She seemed wide awake and very clear-headed. She wanted to go to the bathroom. On the way and back to bed, she looked and sounded normal but she appeared to be “dreaming while awake.” That’s hard to describe, but she talked as though we were someplace away from home. She mentioned other people. Then she said, “What do we have planned for tonight?” I told her we were going to have dinner at Casa Bella. She asked if we were going with anybody. I told her we would go by ourselves and sit with the same people with whom we usually sit. She was pleased we were going by ourselves although I thought she missed the fact that we would sit with others.

I thought that was it, but after we were in bed we spent the next fifteen minutes or so repeating the same conversation. Then we both went back to sleep. This kind of thing has occurred several times in the past. I think she has a dream about some obligation and is concerned about it. In a couple of instances, it was clear that she thought she had an appointment and needed to get ready. Most often, she just asks the question and the repeats it a number of times without any expression of anxiety.

About 10:15, I noticed that she was sitting up in bed. I went back to see if she wanted to go to the bathroom. She smiled as I got near the bed. It looked like everything was fine. We chatted a few minutes. She said, “Where am I?” When I told her we were at home, she wasn’t satisfied with the answer. She wanted to go home. At first, I told her she was at home, but that didn’t sink in.

I tried to divert her attention by taking her to the family room. She enjoyed seeing all things she usually admires, but she still wanted to go home. She was also tired. I led her back to the bed. She didn’t want me to leave her although she didn’t remember who I was. I brought my laptop and sat with her for another thirty minutes before suggesting that we go to lunch. By that time, she had forgotten about going home, and she didn’t say anything more the rest of the day.

When we got home, she had a brief hallucination as we got out of the car. She pointed to something leaning against the side of the garage. She thought it was a girl. There wasn’t anything I could see that might cause her to think that, but I just went along.

She had another unusual experience after she was in bed. She pointed to the ceiling and mentioned something about the “people over there.” I was never able to make much sense out of what she was saying. Then she said she wanted me to help her understand what was going on. I told her I would be glad to and asked what she needed to know. She pointed around the room and said something I never understood. It was another sign of her aphasia. She used a word that had nothing to do with whatever she meant. I think she was talking about all the objects in the room, but I was never clear. Periodically, she would say, “See them over there.” A couple of times, she mentioned animals in the room.

We got through the night without any special “happenings.” She was up early to go to the bathroom and was in a cheerful mood. She has been back in bed for almost two hours. I noticed on the video cam that she is moving around in bed. I’ll check on her. It’s about time to get her up for lunch. I wonder what’s up for today. Clearly, her brain is making changes. I never know where it will lead.

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An Example of Kate’s Self-Awareness

Over the past few days, Kate has snapped at me several times. As in the past, she quickly apologized with tears in her eyes and said, “I shouldn’t have said that.” I’ve been struck by her awareness that she has spoken to me in a way she hasn’t done before Alzheimer’s entered the picture. Two nights ago, I was even more surprised.

We had just finished a very pleasant dinner at Bonefish Grill. I started the car, and she said, “May I tell you something?” Her tone of voice made me think she was going to say something nice about my caring for her as she often does. I was surprised when she said, “I know I’ve been hard to deal with lately, and I want you to know I’m sorry.” I was both touched and stunned. Here she is trying to adapt to the changes taking place in her brain, and she feels bad about the way she has treated me. Apart from that, I was amazed that she said this “out of the blue.” I think it had been more than twenty-four hours since she had last snapped at me. That tells me this is something that really disturbed her. That matches her other concerns related to not knowing “anything.” To me it is a remarkable example of her kind heart and self-awareness. It also increases my desire to see that she gets the best care I can give her.

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Life Can Be Frightening for People with Dementia.

I have frequently mentioned that Kate’s emotions seem to be on “high alert.” That was certainly evident the past couple of days. She was up early yesterday, and we went to Panera for an hour before going to lunch. As usual, I got her seated and set up her iPad with a puzzle for her to start while I got her drink. When I brought the drink back to her, I set it down on the table. It gave her quite a fright. She sat back in her chair and made an audible noise that was clearly noticed by the people near us. At first, I thought it was the noise on the table, but I believe it was a combination of that and the surprise when I put it down. She was probably focused on her puzzles and not aware that I had come back to the table. Whatever it was, it was an unusual response to a very ordinary event.

Our Rotary club is working on a project to place children’s books in several locations around town where children might be waiting with their parents. I am out of touch on children’s books and wanted to browse through the collection at Barnes & Noble. We stopped by after lunch. She was unusually cautious as we walked across parking lot to the store. I think her vision is the cause of her concern, but I also think her not knowing where she is or where she is going adds a measure of fear that leads to her more extreme response to things like that. She never knows what to expect. We didn’t stay long. Kate was tired and wanted to rest. As I helped her into the car, the door closed slightly. She reacted as though the door was about to hit her even though it would have hit me first.

She was glad to be home and rested for about two hours. Then we looked through a small part of one of her photo books. She was enjoying it, but she was tired and wanted to rest a little more before going to dinner. I believe that her resting is really because he is worn out. She had gotten up earlier. I’m sure that accounts for part of it, but I also think she has to work so hard to do everything that it wears her out.

We had a nice dinner at Bonefish Grill last night, but Kate was eager to get home. She asked a number of times how long it would take to get there. She didn’t waste any time getting to bed although she didn’t go to sleep right away. That has become typical. I don’t think she goes to sleep for at least an hour or two after getting in bed.

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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.

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Update on In-Home Care

It’s been a while since I’ve commented on Kate and her sitters. That’s a good sign. Everything has been going well. Yesterday was a good example. Kate was up much earlier, and we returned from Panera about 10:15. She was tired and made her way to the sofa as soon as we walked in.

The sitter, Cindy, arrived about 11:50. She is always early. I like that because it gives me a little more time to get to Rotary before 12:30. I met her at the door and walked with her to the family room. Then I walked over to Kate and said, “Guess who’s here? Cindy. And she’s taking you to lunch.” Kate immediately sat up and with a big smile told her she was glad to see her.”

When I got home, I walked into the kitchen and said, “I’m back.” I heard Kate say enthusiastically, “Good.” She was happy to see me, but it didn’t seem like she was greatly relieved. That kind of departure and return home is what I like to see. I want her to feel comfortable with her sitters. The more comfortable she is the better I feel about leaving her.

That has taken a long time. In fact, it has been two years and two months since I first engaged the sitters. It is only in the past 4-6 weeks that I have felt good about leaving. Sometimes she still asks, “What are we going to do?” (as she did yesterday) when I am ready to leave, but she doesn’t seem uneasy about my departure. On Mondays, I tell her that Cindy is taking her to lunch. That seems to take care of any concern she has. Sometimes she says, “I don’t have any money.” I tell her that Cindy can pay with a gift card I bought.

I started with two sitters, one on Monday and the other on Wednesday and Friday. Each visit is four hours from noon until 4:00 on Monday and 1:00 until 5:00 the other days. When I began, I fully expected to increase the number of days and/or the amount of time they are here. I haven’t because I don’t feel the need. Our insurance covers eight hours a day. That gives me plenty of room to increase Kate’s care at no cost, but I still enjoy being with her.

Having said that, I do find that my personal time is declining. That is true largely because I need to be more directly involved in entertaining her. That relates to her not using the iPad as much. Some of that is offset by her resting more, but I don’t want her to rest solely because she doesn’t know what to do. Given these changes, I may find myself open to adding more time in the next six months or so.

We have been lucky in that Mary, the Wednesday/Friday sitter, has been with us since almost the beginning. That continuity has made me feel better. I think it has been good for Kate as well. We have had several changes with our Monday sitter. Cindy, the current one, has been with us several months. I am comfortable with both of them and hope they will be around for the forseeable future.

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Trying to Get Back to “Normal”

About 10:45 yesterday morning, I put on some music to wake Kate. Ten minutes later, I approached her bed. She looked up at me and smiled. I knew it would be a different day. I didn’t test her, but she appeared to recognize me. She was still very relaxed and not ready to get up. I chatted with her for another few minutes before telling her I would like to take her to lunch.

She still didn’t want to get up, but finally, with a little encouragement, she did. It was a shower day, and she wasn’t enthusiastic about that. Again, she delayed a little but agreed it was good to get one. Then it was back to bed for another twenty minutes before I got her dressed.

It was a morning when she wanted to exercise her independence and let me know it rather sternly when I tried to help. This is a tough situation for her because she always ends up recognizing that she needs help even though she wants to do everything for herself. I really felt for her. I am always struck by her self-awareness when she responds so harshly to me. She apologized several times before going to lunch. I may say more in another post, but I want to emphasize something I have said before. I don’t interpret her irritation with me to be a direct symptom of her Alzheimer’s. It appears to be result of what is a symptom – an inability to understand what I want her to do and/or my intentions. In her confusion, she strikes back in defense then intuitively recognizes that is not the way she has traditionally acted or wants to act.

Our walk through the family room was not as long as it often is, but she did react positively to the usual things that appeal to her. It was the drive to lunch with music she enjoyed that brought her back.

We didn’t get to the restaurant until 12:45. They were “slammed.” As a result, we didn’t get home until almost 3:00. She was ready to rest and did so for the next two hours. I was on a phone call with my brother fifty minutes of that time. She appeared to sleep a while, but she was awake most of the time. She often mentions the trees outback, especially the tops of the trees she sees through the skylights. She didn’t talk at all yesterday. A half hour before we left for dinner, I thought about looking at some of our old photos, but that didn’t seem to appeal to her.

Throughout the day, she was confused about a variety of things. Most of them were the usual ones I have mentioned before. I had a hard time getting her to understand about using soap when she showered. When I attempted to show her by putting the soap on her, she said, “Don’t touch me.” I think that was a moment when she didn’t recognize who I was. She is also beginning to get confused about the use of her toothbrush and toothpaste. At dinner, I brought her an extra napkin. She didn’t know what to do with it. I explained it was just an extra one she could use if she needed it. (She always does.) She said, “Where should I put it?” I showed her a place on the table to the left of her fork. She couldn’t understand what I meant. I finally placed it for her. She still looked confused.

The best part of the day, and it was really good, came after we got home. I turned on the TV to a YouTube video of a concert version of My Fair Lady with Kiri Te Kanawa and Jeremy Irons. I have played this several times before, but she was never as taken with it as she was last night. She sat in her chair and devoted her attention to it for almost an hour. That is unusual. It is more typical for her to lie down in bed and listen without watching. When the video was over, I got her ready for bed. I had intended to stay up a little longer as I usually do, but she wanted me to come to bed as well.

Ending the day on a high note is one of the most predictable times of the day. The morning continues to be the most unpredictable; overall, however, we still have more happy times than sad ones. I am grateful.