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Signs of Aphasia

When Kate had her psychological evaluation following her diagnosis, the psychologist told us that she was likely to retain her greatest strengths the longest. I would say that is her gift for conversation in everyday social encounters. I attribute her success in social situations since her diagnosis to that particular skill. It has meant she could get along well without saying anything that would make it obvious that she has Alzheimer’s. That is changing significantly now.

There are two aspects of her aphasia that coincide with fundamental symptoms of dementia. The first is difficulty organizing her thoughts to explain something she wants to tell you. This has been a problem for a long time. I quickly learned not to ask her to explain anything. She would simply say, “Let’s not talk about it now.” The second involves her memory for words. That is happening now.

I am sure this began earlier than I recognized and relates to the difference between all the words in one’s vocabulary and the words that are most frequently used. Now she doesn’t recognize some of the most common words that we all use. I mentioned in an earlier post that I have had to tell her what pizza is on several occasions. I’ve tried to describe a pizza, but the best way to tell her is to pull up a picture on my phone. Ironically, one of the first words to drop out of her vocabulary was iPad. She almost always calls it “my thingy.” That is also used for a number of other words that she can’t recall.

Sometime during the past week, I told her she was up early enough for me to get her a blueberry muffin. She had no idea what I was talking about. This week she looked at the salt and pepper shakers on the table at a restaurant and asked what they were. I explained, but she didn’t appear to understand. On another occasion, I used the word “restaurant.” She didn’t know what I was talking about.

Another type of speech problem is properly pronouncing words. This comes up most often when she asks me the name of something or somebody. I think this occurs because she doesn’t hear the name correctly, but I am not at all sure. It also occurs in other situations. For example, she often pronounces “shoes” as “shows.” The other night she said, “I still want to walk a little bit on my thingy.” (Translation: “I still want to work a little bit on my iPad.”) Similarly, she recently said something about my “bed.” She meant my “head.”

Even though I know this is a common characteristic of this stage of her Alzheimer’s, I find myself concerned about it. Perhaps, I am sensitized because of our experience with Kate’s friend, Ellen, in memory care. We continue to visit her every 4-5 weeks, but her aphasia has made our visits more challenging. I can’t help wondering how long it will be before Kate is in the same position. That would be a major change in our lives.

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Markers on Our Journey

One of my AlzAuthors colleagues and a Twitter friend, Barbara Ivey, has written a unique “book” called Patterns in Time. It is by far the “tidiest” summary of a family’s experience with Alzheimer’s I have read – 8 pages including the front and back covers. Despite its brevity, it includes relevant information about the disease, key resources for help, and a remarkably complete summary of her mother’s Alzheimer’s along with the roles that she and her father played.

I have been particularly taken with her timeline that shows key events that occurred along the way. It reminds me of the admonition of sales trainers that a good sales person needs a strong “30-second sales pitch.” Ivey’s message is brief and to the point, but it tells her story. One reason I find her approach fascinating is that it is the exact opposite of what I have tried to do in this blog. I have saved my journal in several different files and haven’t checked the number of pages since launching it as a blog in January 2018. I seem to remember it was over 1500 pages at that time. It must be over 2000 by now. For the most part, I believe it is accomplishing my objective. It is a detailed account of our experience Living with Alzheimer’s. The problem is that it is too long for anyone other than close friends or family to read in its entirety.

For some time, I have thought about using it as a resource for a book that would tell our story in a more “digestible” format than an almost daily journal. It might have been helpful for me to have kept a timeline similar to the one in Ivey’s book. I didn’t do that, but I have noted a number of markers along the way. During the first few years, there were very few. Now they appear much more frequently. Creating a timeline from those that have occurred and all the new ones could be the basis for editing my blog and turning it into a book.

Some of the key markers of the past include Kate’s diagnosis, our planning for the rest of our lives (travel, eating out, music, visiting family and friends, etc.) Kate’s giving up her computer, our last international trip, giving up her yardwork, our last trip to her home in Fort Worth, our last trip to Chautauqua, our last visits to our children’s homes, the forgetting of the names of her family, our last movie, no longer attending evening music and theater performances, and the near elimination of trips to Panera and Barnes &. Noble. Of course, there were many others as well.

We have recently experienced two new markers. Both of them involve Kate’s increasing problems of mobility. I used a handicap placard for the first time when we met friends for dinner last week. I had just gotten it the week before. We find convenient parking most places we go, so I had not felt a need for a placard before now. In this particular case, we were going to a restaurant in a downtown office building. It can be difficult to find on street parking, and the parking garage requires a long walk. In the future, I am sure I will find other occasions when having the placard will be useful.

Kate has been having more problems getting up from chairs at home as well as the sofa. After lunch yesterday, we drove across town to the La-Z-Boy showroom to look at lift chairs. The only thing I told Kate was that I wanted to look at a chair that might be easier for her to get out of. She wasn’t excited.

When we walked into the showroom, we were greeted by a sales woman who took us to the appropriate section. She had quickly noted Kate’s size and showed us one that she thought might be the best fit. Kate took a seat and loved it. This was before demonstrating how it works. Once we had done that, she liked it even better. I went ahead and bought it although it will be 4-6 weeks before delivery. It will also have the advantage of reclining so that she can rest in the chair rather than the sofa. I think she’s going to like it.

These are just two among many other things that are happening now. I will talk about some of them in other posts.

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A Day of Confusion, Not “Knowing,” and Insecurity

About 4:15 yesterday morning, Kate moved over very close to me. Then she took my hand and held it gently. I often wonder if she knows who I am when she wakes in the middle of the night. Neither of us said anything, but this was a time when I felt sure that she did.

I was wide awake and decided to get up at 4:45. After finishing in the bathroom, I walked toward my closet when I heard her say, “Hey.” I walked over to the bed and could see that she was having one of her moments of confusion. I asked if I could help her. She said, “I don’t know.” I said, “I bet I can. Were you wondering where you are?” She told me she was. I explained that we were at home. She had trouble believing that. I didn’t push it. She asked my name and then hers. She said, “Who are you?” I told her I was her husband. This was one of those times when she didn’t express any doubt or say, “How did that happen?” I told her we had been happily married for fifty-six years and that I loved her. She said she loved me too.

We talked a little longer, and I asked again if there were anything specific I could help her with. She wanted to go to the bathroom. As she got out of bed, she was shaking a little. She held my hand and said, “I’m sure glad I have you.” I said, “And I’m glad I have you.” When she finished in the bathroom, she said, “What now?” I told her it was early and I thought she should go back to bed. After walking her to bed, I was about to ask if she would like me to stay with her when she asked me to stay. We talked about fifteen minutes. During that time, she was very insecure and expressed her feelings about feeling better with me. Then she said, “I’m all right now. You can go.” I told her to call me if she needed me. She said, “What should I say?” I told her she could just say, “Hey.” She wanted to know my name. When I told her, she said, “Okay, Mr. Richard.”

We had a nice relaxing day. It was Labor Day. My Rotary club did not meet, and I gave the sitter the day off. Most of our usual restaurants were closed, so we went to one we like but rarely visit. Then we came back home for the afternoon. Kate was very tired and rested for at least two hours but did not go to sleep. When she sat up, I asked if she would like to go someplace like Barnes & Noble. She said she would rather stay at home. That is now becoming a more established pattern. It doesn’t seem that long ago that we went out almost every afternoon. That is another change that has cut down on our social contact. That means our eating out is becoming more important for us.

Since she didn’t want to leave the house, I suggested we look at an old photo album I had retrieved from a closet the day before. It has pictures of our children at the time of our son’s birth. It had been a very long time (years) since we had looked at them. We spent another hour with it. Kate loved every minute. As she has done with the other family photo books, Kate can never make the associations that would help her guess who the people are. For example, after I identified Jesse and Kevin in one photograph and pointed out Jesse in the following picture, she didn’t know who the boy was even when they were dressed in the same clothes as the previous photo. I don’t mean that this happens every time, but it is very common.

Before leaving for dinner, she said something that reinforces my belief that she recognizes that she has a significant “problem” and depends on me. She struggled with how to say it and ended up saying something like, “I know my problem is not that serious, but I appreciate your taking such good care of me.”

Throughout the entire day she seemed very insecure. She expressed that by her thanking me for taking care of her and asking what she should do somewhat more than during a typical day. As I have said before, her neediness and expressions of appreciation make me more determined to keep her happy and see that the rest of her life goes as smoothly as it can.

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Does she know what lies ahead?

I don’t think I am alone among caregivers when I wonder exactly what Kate knows. By now I realize that she knows very little when it comes to her rational thought/abilities. Many times I have mentioned how often she can’t remember my name or our relationship. I take comfort in the fact that her intuitive thought/abilities are still working well. Through them she almost always recognizes me as someone very familiar and trusting.

For over a year, I have also realized that she no longer remembers that she has Alzheimer’s. At first, I wondered if I should tell her and, on one occasion, I did remind her. She hadn’t remembered, but she quickly forgot, and I haven’t said anything since. I haven’t see anything to be gained by it.

She has always recognized that she has problems and needs my help. It was only a year ago in July that she began to experience anxiety or panic over moments when she didn’t seem to know anything – where she was, who she is, who she was with. Within the past few weeks, I have sensed that she might believe that her problems were of a more serious nature, not just a periodic lapse of memory. Over the past week or two, she has said and done things that lead me to think that she knows she is declining and is afraid of what lies ahead.

Sometime in the past day and again today at lunch I felt strongly that she recognizes that through her intuitive thought. She was awake when I went to get her up for lunch. She didn’t seem frightened, but she was uneasy and insecure. She was especially eager for me to help her with everything. That follows signs of increasing insecurity and appreciation for my helping her during recent weeks.

At lunch, I said something about her mother and father. She wanted to know their names and something about them. When I said that her father was one of eight children, she said, “I know why.” I said, “Why?” She said, “Because in those days, they needed more children.” I was surprised that she came up with this and said, “You know, you are smart.” She beamed and said, “I think so too.” It was as though she was relieved to have me say that. Off and on she has said she is smart, but that has been more frequent recently. I have felt she was trying to convince herself that is true. It would be easy to think she is not given how poor her memory is and how little she is able to do.

During our conversation, she stopped and said, “I want to tell you something.” She looked very serious. I leaned closer to her. She said, “I know that you will always take care of me.” I said, “I will. You can count on that.” Her eyes filled with tears, and she said, “Thank you. I know you will.” I felt we were thinking similar thoughts about the future. There is no way I can be sure, but the look on her face made me think that.

I told her I loved her, and she said the same about me. We began to talk about our marriage, and I mentioned our children. She said, “Who are they?” I told her and she asked if I had a picture. I pulled out my phone and showed her pictures of Jesse and Kevin. She said, “Do you think they love us?” I said, “I know they do?” She choked back her tears.

In a few minutes, we got up to leave. She started whimpering and was loud enough that I saw people at two different tables look up. On the way to the exit she continued to cry softly. We stopped right there in the dining room and hugged for a moment and then went on.

I don’t know precisely what she is thinking, but she seems very concerned and doesn’t see a happy ending. I am glad she still knows that I will be with her all the way.

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Kate’s Final (?) Appointment with her Ophthalmologist

We may be reaching a point at which we no longer schedule routine medical appointments for Kate except for her primary care physician. It is becoming a matter of assessing the risks vs. the benefits.

Yesterday she had a routine appointment with her ophthalmologist. This is one in which I had a special interest. I have commented many times on her eyesight problems. Kate is unable to recognize that she has a problem, but she seems to see some things and not others. For example, she may not see a large object on a counter but notice a small spec of dirt on our carpet or small particles of food on a restaurant table. Until recently, I had attributed her vision issues to her Alzheimer’s rather than a physical problem with her eyes. Two particular issues, however, have made me wonder if it could be something like macular degeneration. In a phone conversation with her ophthalmologist I confirmed that at the time of her last check up in February, there were no signs of a physical problem and that it was unlikely that it would have developed since then. Nonetheless, I wanted to know for sure. Yesterday’s visit provided the answer. It was just what I thought. Her eyes are fine. Her vision problem must be related to her Alzheimer’s.

There is more to report, however. Appointments themselves are becoming a problem. Kate has little patience, and waiting is a normal process in most health-related professions. The notable exception is her primary care physician who is associated with a gerontological practice. The wait time in the lobby is not usually more than 5-10 minutes. The appointments are not scheduled as closely together. Her doctor, and the others we have seen, always take a lot of time with their patients, many of whom have dementia. They know how to relate to patients like Kate.

I don’t mean to suggest Kate’s eye doctor and/or staff are insensitive to the needs of patients with Alzheimer’s. They aren’t, but the system is set up for non-dementia patients. That means waiting times exceed Kate’s patience. Her appointment was at 1:15. She didn’t see her doctor until 2:15. To be fair, she was only in the waiting room about fifteen minutes. She spent another 15-20 minutes with the doctor’s assistant who was getting information, checking her vision, and giving her the necessary drops before the doctor arrived. That left about thirty minutes before she saw the doctor. Kate has trouble understanding the instructions anyone gives her, so that complicates every portion of the examination. Neither does she understand why she needs the exam in the first place. Yesterday’s exam was particularly difficult for both Kate and the assistant.

The good part is that she took it somewhat good-naturedly. She joked a lot, and both the assistant and the doctor got a kick out of her comments. Sometimes she was quite serious. When the assistant checked her eye pressure, Kate was startled, pulled herself away, and told the assistant to stop. Then she did something that surprised me. She looked at the assistant and spoke to her  as though she were a teacher. She said, “Talk slowly. Go one step at a time, and give me clear instructions.” That is exactly what she needs. Of course, not even that will insure that she understands. At the end of the visit, the doctor looked at Kate and said, “Well, I have good news for you. You don’t need to come back for a year.”

When we checked out, it was a challenge finding an afternoon appointment at our preferred location. We finally found one at 11:55 on August 28 of next year. I can’t imagine that Kate will be up to another visit when the time comes around. I feel sure her doctor felt the same way, but, like so many other things, we will see.

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Sleep and Rest

Until a year ago this past April, Kate’s sleeping pattern had been pretty steady. I’m not at all sure that she sleeps any less today than she did, but the time she gets up often varies. More than half the time I get her up between 10:30 and 11:30 depending on whether we have any special obligations. Sometimes, as she has done in the past couple of weeks, she gets up as early as 8:30 or 9:00. It is not uncommon for her to be awake when I go to wake her. She usually goes to bed between 8:30 and 9:30. I don’t think she is usually asleep until 10:00 or later. She must get about 12-13 hours sleep a night. Eighteen months when she was on Trazadone, she slept about 13-15 hours.

The major difference now is the amount of time she rests without going to sleep. Yesterday, for example, I got her up around 11:00. It took an hour and a half for her to shower and dress before leaving for lunch. We got to lunch just before 1:00 and arrived home at 2:30. I suggested that she and I look through one of her family photo albums, but she wanted to rest which is typical when we get back from lunch. She immediately went to rest on the sofa in the family room. She rested until 5:30 when I suggested we go to dinner. There was a short period, no more than 15-20 minutes, when she appeared to be asleep. Otherwise, she was just relaxing.

I am guessing that the strain of social interaction, looking through photo albums, and working on her iPad wear on her in a way that is hard for me to understand. She doesn’t usually show any special signs of fatigue until after we head home from the restaurant. During lunch, she sometimes tells me she wants to rest as soon as she gets home.

As I have mentioned before, the amount of battery life left on her iPad is a good indicator of the amount of time she uses it. Though it remains her primary self-initiated activity, she clearly doesn’t use it as much as she did. That is a result of her resting more because she hasn’t replaced the iPad with another diversion.

The most significant change brought about by her current pattern of sleep and rest is our getting out to Panera in the morning and to Barnes & Noble in the afternoon. That had played a major role in our social engagement. That makes our lunches and dinners our primary means of social contact. That continues to work well for us.

The mornings are times for me to take care of all the routine household chores and other personal obligations I have. I now wash as often as four times a week. A year ago, washing was just once a week on Saturday morning. I also find that the afternoons are pleasant times for us. When she is resting in the family room, I always take my laptop or iPad and stay in the room with her, and, of course, music is always playing. Since Kate is not asleep, we also engage in intermittent conversation. It makes for a very relaxing afternoon for both of us.

Life is different now, but we still get along “remarkably well.” I certainly expect more challenges like the ones we have faced recently, but I am also optimistic that we will handle them well and be grateful for Happy Moments past, present, and future.

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And More Emotional Experiences

When I arrived home to relieve the sitter on Friday, Mary heard me open the door and told Kate I was home. I walked into the family room. Kate had been resting on the sofa and gotten into a sitting position when she saw me. She had a big smile on her face but immediately burst into tears. She couldn’t stop and continued until after Mary had left. I sat down with her and we hugged. She said, “I’m so glad to see you. I was so worried.” This was the way she had reacted when I returned two weeks ago. There was one big difference. She didn’t recover as quickly. Over the next thirty minutes, she continued to express how happy she was to see me. It wasn’t until we went to dinner that she had fully calmed down.

Last night Kate had a very traumatic experience involving a delusion that I had had a fight with her mother who died in 2005. The way she described it this was something that she had just overheard. She had been in bed for about an hour, so I suspected that she had had a dream. After reflecting on it, she probably had never gone to sleep. On several previous occasions, I have noticed that she has had similar experiences, but this one was definitely the most intense. She was angry with me. As I tried to calm her, she shifted her story. Then it sounded like the fighting was between her mother and father. A few minutes later, she settled into its being between our neighbors.

Several times she said she wasn’t going to talk about it anymore. Then she would continue. She kept talking about the “foul” language they were using and how sorry she felt for the children. She was so upset that she said she wanted to move out of the neighborhood. Trying to calm her, I played along as though I believed what she said and suggested that we might talk about moving in the morning. I knew that it would all be forgotten then. I also diverted her attention by talking about how fortunate we have been to have a marriage that has been free of the kind of fighting that she had observed. That seemed to work. She settled down, and we called it a night. The entire episode lasted about an hour and a half.

On the way to lunch today, I played some music. She cried during “Try to Remember.” This is a song she likes, but I don’t recall its leading to tears before. Then at lunch our server approached the table to give Kate a hug. As she did, she said, this is a day when I really need a hug. Then she proceeded to tell us that her neighbor’s dog had killed her cat this morning. That was all Kate needed to hear. She was in tears, and the server felt bad about having said anything.

It’s not just the tearful emotions that are elicited so easily. This morning as well as other times recently, Kate has responded to me with anger when I tried to help her with something that she wanted to do on her own. She is very much on edge now.

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Kate doesn’t always remember I’m her husband, but she still feels secure with me.

It is impossible for me to know how much of the time Kate remembers that I am her husband. I used to be able to identify specific moments when she didn’t. For a while I noticed these moments were longer in duration. More recently, she has brief moments when she knows and doesn’t know. She used to ask my name and our relationship a lot. Sometimes she still does that, but she asks much less frequently than before. She seems to be adapting to not knowing.

What I consider of greatest importance is that she continues to recognize me as someone with whom she is familiar and trusts. Even in those moments when I know she doesn’t remember I’m her husband, she is very comfortable with my helping her with toileting, showering, and dressing. Increasingly, she has become more comfortable just having me around. That has been obvious in her reactions to my returning home after the sitter has been here. In those cases, she has been very relieved when I walked in.

This emotional dependence is also evident in lots of little things that occur on a daily basis. For example, yesterday I had a United Way committee meeting during the lunch hour. Our sitter was scheduled to arrive at 1:00, and I needed to leave the house about 11:30. I asked a church friend, Martha, if she would take Kate to lunch and get her back home for the sitter. Kate has known and liked her for a long time. They used to eat lunch together regularly when Kate was the church librarian and Martha was an assistant to one of the pastors.

It had been at least six months since they had seen each other, and Kate didn’t remember her but had retained a good feeling for her. When Martha arrived, Kate greeted her as naturally as I had hoped. I knew everything would be all right, and it was. Although I had told Kate she would be going to lunch with Martha while I went to my meeting, Kate assumed that I was going to lunch with them. When she discovered I wasn’t, she had a sad look on her face and said, “You’re not going with us?” I told her I was going to a meeting. She said, “I’m going to miss you.” I told her I would miss her too, but I knew that she and Martha would have a good time together. As she got in the car, she said, “I’m almost embarrassed to say it, but I’m going to miss you.”

As I said, this is a little thing, but I took special note of it because she seemed so comfortable with Martha. I hadn’t expected her to be concerned that I wasn’t going with them. I am sure their lunch went well. I haven’t talked with Martha, but I will.

At dinner last night, Kate asked my name. Then she tried to ask our relationship, but she couldn’t figure out how to say it. I said, “ Do you mean ‘How are we related?’” She said yes, and I told her we were married. She said, “No.” I said, “What about being good friends?” She didn’t like that and suggested that we might be like cousins. Then she said, “But that wouldn’t be true.” Then I suggested that she think of me as a helper. At first, she liked that. Then she changed her mind. About that time our food arrived, and we never finished the conversation.

After we were home, I had the impression that she still did not think of us as a married couple. Then our son called. We had a nice conversation with him. Our granddaughter had begun her freshman year at TCU on Monday, and he updated us on how the move had gone. During that conversation, it must have been clear that we are married. She didn’t express any concern or doubts about our relationship the rest of the evening.

It strikes me that she must be experiencing this kind of shift from knowing and not knowing other things as well. That would include other people, our house, and where we are. There were times yesterday that she thought our house was someone else’s house. She has never said anything that suggests she perceives these shifts as strange. What I do recognize are those moments when she doesn’t seem to know anything. That is when her anxiety attacks occur.

This very morning brought another illustration of her dependence on me as a source of security. She had gotten up early to go to the bathroom and gone back to bed. About forty-five minutes later, I heard her call for me. When I reached her, I asked if I could help her. She said, “I don’t know.” In the past, this is what she has said when she was have an anxiety attack. The difference this time is that she didn’t seem to be frightened or unnerved as she has before. I asked her if she would like to bring my things to the bedroom and stay with her. She said she did, and thanked me when I returned. Then she asked my name. I told her. Over the next thirty minutes, she asked the same question again. She didn’t ask, but I got the impression that she didn’t remember our relationship. She did, however, tell me she was glad I was with her. In this case, I wasn’t doing anything but sitting next to her in my chair as she tried to go back to sleep. It took quite a while before she was asleep, but she was relaxed.

In the past few days, I have also noticed an increased desire to hold my hand while we are out. She has said, “I want to make sure I don’t lose you.”

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A Couple of Unpleasant Moments, But a Good Day

Yesterday was a beautiful example of our mixture of good and bad moments. We got off to a good start when Kate woke up before 8:00 to go to the bathroom. She was confused, but she seemed to be in a good mood. Several times she asked where she was and why she was there. When I got her back in bed, I told her I would be in the kitchen if she needed me. She looked frightened and said, “Don’t leave me.” I got my laptop and brought it back to the bedroom where I stayed for about an hour. She was awake a good bit of that time and periodically talked about how glad she was that I was with her. Finally, she fell asleep, and I went back to the kitchen.

A little over an hour passed. I decided it was time to get her ready for the day. I had an 11:30 appointment for my labs before seeing my doctor for a checkup on tomorrow. She got up easily. Then she took a shower and got dressed.

She was fine the rest of the day. After our short visit to the doctor’s office, we went to lunch. She was talkative. We both enjoyed ourselves. We returned to the house for an hour before going for our hair appointments at 3:00. After that, we spent another hour at home before leaving for dinner.

During that time, Kate spent a while going through a book of “word searches” that I had bought for her about six months ago. She has never been able understand the concept that you look at the rows and columns of letters and try to find the words that match the topic for a particular one (Bugs or Islands or Weather, etc.). Yesterday she enjoyed looking through it and created her own explanation of what it was about. I didn’t understand it, but she thought it was something that we could give to trick or treaters at Halloween. I didn’t try to get her to explain. I knew that would be impossible. I was just glad that she found pleasure in looking through it.

After dinner, she worked on her iPad for a longer period of time. She was so engrossed that when I suggested we go back to the bedroom and get ready for bed, she didn’t move. I told her I was going to take my shower and encouraged her to come to the bedroom. She reluctantly agreed.

I put on a YouTube video of an Andre Rieu concert earlier this year while I showered. When I got out she was still working on her iPad. Everything was going smoothly. When I got out of the shower I told her it was getting time for bed. I put the night gown out for her. I try to give her a chance to do this by herself. She prefers this, but often runs into a problem. That was true last night. She asked me to help. That went smoothly, but in the process of getting her to the bathroom, brushing her teeth, and taking her nightly meds, I rushed her. She was angry. That is not something that I am accustomed to seeing. She said, “You just want to control everything I do.”

I realized I had stepped over the line and apologized to her. I told her I really wanted to help her but realized that I can go too far. She began to cry and apologized to me. The crisis was over in just a minute or two, but it made a big impression on me. This was not like anything we have experienced before. Neither one of us likes conflict, and we both work to avoid it.

With that behind us, I helped her into bed and went over to the chair on my side of the bed. I put on some music and was prepared to read for a while as I usually do after she is in bed. This time she wanted me to come to bed with her. I turned off the light and joined her. She said she felt better if I was with her. We didn’t talk much. She began to relax, and we both went to sleep.

As I do so often, I wonder what is going on inside her brain. I recognize that it is possible to calm her. Playing music, being with her, and talking slowly helps her relax. I know that when I rush her, I am asking for trouble. She also has times when she is anxious or afraid. I think the fact that so much of what we do keeps her focused on enjoying the moment that she doesn’t normally feel  anxious. When she first wakes up in the morning, the memory of all the good things we did the day before are gone. She doesn’t know anything. I think I can understand that. I would probably be anxious myself. I also know that I don’t like to be rushed and work hard to avoid it. She is unable to take the steps to avoid being rushed. It takes an external source to do that. I am it, but I have to be very careful to get her ready without her feeling rushed. That is harder now than it has been in the past.

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Lots of Little Things

It seems like each day is a little different now. Kate is much more emotional, dependent, and confused. The combination is making a difference in how much time I devote to tending to her needs. This morning was a good example.

After I was dressed and about to begin my daily morning routine, she wanted to go to the bathroom. I took her and got her back in bed. She seemed especially needy and held my hand going and coming. Several times she thanked me for helping her. As usual, she was confused about where she was. I explained that we were at home, but it didn’t sink in until she looked out the window at the back yard.

Once she was in bed, I told her I would be in the kitchen if she needed me. She didn’t want me to leave her. I asked if she would like me to get my laptop and sit in the chair beside the bed. She was relieved that I would do that. This is the time of morning that I get my breakfast, check the news, get in a little exercise by walking around the house listening to a book, and then tending to my blog. It’s not great problem to make the change in plans, but it is a good example of what is occurring more often than in the past.

Yesterday morning was a different kind of experience. I let her sleep until 11:00. Then I got her up to be ready for the sitter who was taking her to lunch at noon. As we were leaving the bathroom to get dressed, she got a sad look on her face and said, “Just think of all the people who have to go through all this (not sure what this meant) and don’t have all the things we have.” It is not unusual for her to express her feelings about people who are less fortunate than we are, but this was a much stronger expression of those same feelings. She began to cry. I tried to comfort her as I helped her get dressed. Then as we walked to the family room, I saw one of her family photo books and decided to divert her attention to it.

That worked well. She then focused on her family. The tears, however, didn’t stop, but they were now tears of joy. The sitter’s arrival distracted her again. The tears stopped. I told her I would be going to Rotary. She didn’t want me to leave. When I told her that Cindy would take her to lunch and that I would be back later, she was fine.

Kate has continues to pull her hair whenever she lies down. She often talks to me about how much she is accomplishing by doing this. For the first time, she explained that she was “getting all the thingies out.” I asked if she thought they were alive. She said, “I guess.” This is similar to her feeling that she has “bugs” in her teeth and on her body, especially between her toes.

As I have said before, life is different now.