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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.

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A Day of Ups and Downs

As I said in my previous post, Kate was resting peacefully yesterday morning though not asleep. When I felt it was time to get her up for lunch, I encountered what appeared to be a combination of anxiety and depression. She didn’t want to get up. I quickly sensed that this wasn’t something I had faced before. She seemed more frightened. It was also one of those times when she wasn’t sure who I was and wasn’t as trusting as usual.

I decided not to worry about getting her up immediately but to see if I could comfort her as I have done in the past. I brought in the photo of her mother from the hallway. She looked at it but didn’t say anything nor did she express any interest in seeing it. I put it back and brought in the “Big Sister” album with the photo of her and her brother on the cover. She was mildly interested. She did recognize herself, but it didn’t do a thing to change her mood or readiness to get up.

I said, “You look frightened. Are you?” She nodded her agreement. I said, “I would like to help you if I can.” She said, “I know you want to help, but there isn’t anything you can do.” I asked if she could tell me about it. She couldn’t. I continued to talk with her very gently focusing on making her comfortable with me. That paid off.

After what was probably fifteen minutes, I asked if I could take her to lunch. She said, “I don’t know.” Then I suggested that she might feel better if she got dressed and we went to lunch. She didn’t buy into that immediately, but I assured her that she would feel better if she got up. She finally agreed.

When she got to the family room, she started to recover. She took an even longer time looking at the plants on the patio and the trees behind our house. She also perked up when she saw her ceramic cat just before entering the kitchen. All of this stimulation took her mind off of her fright. It looked like she was fine. Then as we stepped out of the house into the garage, she became frightened again. She didn’t know why.

We got into the car, and I put on some music that I hoped would help to calm her. That worked. By the time we reached the restaurant, she was all right. We encountered only one issue during lunch. She asked my name. I told her, and then she became very sad about not remembering it. Then she asked her name. When I told her, she tried several times to repeat it, but was only able to do it with great difficulty. The rest of our lunch went well, and we got back to the house without any problems.

As she often does, she asked what she could do. I gave her the usual options. She decided to look at a photo book. I decided to let her look through it by herself. I read the introductory information. Before I finished, she was tired and wanted to rest.

She rested about two hours before I asked if she would like to look at some of our old 35 mm slides that I had converted to digital a few years ago. She usually declines. This time she surprised me. I got my laptop and sat down beside her. I started with photos from the Fall of 1968 when our daughter was born. She enjoyed seeing them. It had been years since we had looked at them. We spent almost an hour doing that before going to dinner. It was a highlight of the day.

As we drove home from dinner, she became concerned about “the other people” who would be “there.” I explained that we were going to our house and that no one else would be there. I told her it would be a time for us to relax without any obligations. That seemed to relieve her. At least she didn’t say anything more about it.

At home, she surprised me again by working on her jigsaw puzzles for over an hour without much help. After that she was tired and wanted to quit. We adjourned to the bedroom, and she was in bed around 8:00. It is almost 10:00 this morning, and she hasn’t gotten up. I’ll let her sleep until 10:45 if she doesn’t wake sooner. I am hoping for a better day.

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Dependence and Anxiety

Kate’s dependence on me continues to increase. That is particularly true in the morning when she wakes up. The way I explain it is that all of the circuits in her brain shut down as she sleeps. When she awakes, they start to connect again. Her memory fails, and she can’t make sense of where she is. Some mornings it is much worse than others. That can lead to anxiety as it did yesterday and today.

Day before yesterday, as she has done frequently in recent days, she got up to use the bathroom around 6:30. She needed my help getting to the bathroom and back, but that was no different from other mornings. Around 10:30, I noticed on the video cam that it looked like she was about to get up. When I got to the bedroom, she was still lying down. She looked frightened. I asked if I could help her. She said, “I don’t know.” That is a frequent answer when the only thing she knows is that she doesn’t know “anything – where she is, who she is, etc. In moments like these I assume that she doesn’t remember my name or our relationship. I focus on trying to comfort her and relieve her anxiety. I sat down on the bed beside her and said, “I am here to help you with whatever you need.” She said, “What do I do?” I explained that she it was about the time she usually got up to dress and that we could go to lunch together.

I got her up, and we went to the bathroom to brush her teeth. As we walked, she shook with fright. I assured her she was going to be all right and that I would be with her. She held my hand very tightly. When we got to the sink, I started to put toothpaste on her toothbrush. She snapped at me saying, “I can still do some things by myself.” She quickly apologized for talking to me that way. Then she said something I can’t remember, but I took the meaning to be “I just want to be myself again.”

That and a similar comment she made while dressing confirmed the suspicions I have had for some time. Her self-awareness is still strong. She knows she has a serious problem and at times like that it is painfully frightening. What she doesn’t know is that she has Alzheimer’s, and that she is not going to improve.

I told her I would be able to help her. Then I relied on diversion once again. It has worked well in the past. It worked again this time. I repeated my usual routine. I showed her photos of her mother and grandmother in our hallway. Then we walked to the family room and let her respond to the flowers, photos, and all the greenery behind our house. She recovered and was fine the rest of the day.

Yesterday I forgot to turn on the iPad I use to monitor the video cam until I was about to serve up my breakfast. When I did, I saw that the door to the bathroom was closed. I got to the bedroom as she was just coming out. She was not as disturbed as she was the day before, but she was certainly uneasy. I helped her back to bed, and she thanked me. Then she said, “I feel better knowing you are here.” I said, “Would you like me to bring my things back here and stay with you?” She did, and I stayed until it was time to get her up for lunch. She slept about an hour and a half. Then I saw her running her fingers through her hair. I had music playing softly. She was very peaceful.

These two experiences are unusual, but her dependence on me steadily increases. It’s expressed in little things like wanting to hold my hand while we are walking. I’ve grown accustomed to hearing her say, “Take my hand.” or “Hand.” She also says things that more directly communicate that dependence. Yesterday, for example, she said, “I don’t feel scared when I am with you.”

I will report on the rest of the day in my next post.

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Yesterday’s Happy Moment: An Example of Kindness

I don’t recall exactly when Kate and I began eating out for lunch and dinner. It was at least eight years ago, perhaps longer. In January, it will be nine years since her diagnosis. I was still working then, but I started taking Kate to lunch almost every day. For our evening meals I prepared a meal at home or brought in something from a nearby restaurant.

I soon tired of fixing dinner and cleaning up afterwards. The meals themselves didn’t seem special. That’s when I decided to eat out for all our lunches and dinners. I was motivated by convenience and a desire to concentrate on having a good time with Kate. As I learned long ago, change brings about unintended consequences. Yes, I did find it easier to eat out than to prepare or bring something in, but that turns out to be a smaller part of the story. What I discovered is that eating out became not only a time for Kate and me; it became a moment of social engagement that has been a lifeline from the very beginning.

As a result of our going to the same restaurants on a weekly basis, we have come to know the servers, hostesses, and other personnel. Just as important, they have come to know us. From the beginning, I informed them of Kate’s Alzheimer’s. This was long before I had my printed Alzheimer’s cards. I wanted them to be aware so that they would understand if they ever noticed something that might seem a bit strange.

Much is written about caregivers and their need for support. Earlier this week, I saw a Tweet that indicated that 74% of caregivers never ask for help. I understand that; I’m not prone to ask for help myself.

I’ve also read about the importance of a caregiver’s “building a team of support.” That caused me to reflect on our own situation. I had never thought about doing that for Kate and me, but that is exactly what has developed because of eating out. Yes, it consists of many short-term interactions and is not like the long-standing relationship of close friends. However, it provides a good bit of support and not just to me as a caregiver, but to Kate as well. We experienced a good example of that yesterday at lunch.

A month ago, the young woman who had served us the past three years for our Saturday lunch left her job for another one. We continue to go to the same restaurant and are getting good service, but I have missed the one with whom we had gotten so well-acquainted. Last week, I sent her a text and invited her to be out guest at one of our other restaurant. I didn’t know when I asked her, but it turned out to be her birthday.

We had a nice conversation under more leisurely conditions than when she was serving us. She has always given a lot of attention to Kate and did so again yesterday. I was careful to seat Kate directly across from her to make that easier than if I had been seated there. I’ve done this on several other occasions and sense that it makes a difference.

I made reservations and requested a server that has taken care of us frequently. When I introduced her to our guest, I mentioned that she had been our server at another restaurant. That opened the door to a little conversation between the two of them. The obviously shared a number of things in common.

The big surprise came after we had finished our meal. I told our server I knew we wanted a dessert since it was our guest’s birthday. I expected that she would bring the dessert menu. Instead, she came back with two desserts, a crème brûlée cheesecake with a candle and a large chocolate cake with raspberry filling between the layers. She said she had bought the cake especially for Kate who was touched and broke into tears of joy. Then the server left and brought a beautiful potted plant for her. Nothing could have been better. We have added that to Kate’s other flowering plants in our family room and on the patio where she can enjoy it every day.

It was a beautiful way to end our meal. It was also a reminder of how kind people can be. Incidentally, this was the same restaurant where some anonymous person paid for our meals two weeks ago and where that same server had brought her mother in to meet us. None of the restaurant personnel think of themselves as playing a role as members of our “support team,” but they are and have been. It really makes a difference in our lives and is just one other example of how fortunate we have been.