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All’s Well That Ends Well

Morning confusion isn’t something new for Kate. She isn’t usually frightened by it, but that happened earlier this week. She was sleeping soundly at 11:00 when I went in to wake her. The look on her face is always the first sign of how she is feeling. She often smiles. Sometimes, she is quite cheerful. Sometimes, I see the look of confusion. This time, I sensed fright and said, “You look scared. Are you?” She nodded.

I launched into what has become a common routine. I try to be reassuring and say, “I can help you. You and I met at TCU and have been together ever since.” She looked doubtful that I could do anything for her. I went on to tell her that I knew a lot about her and her family. Then she said something that I’ve never heard her say before and can’t remember her exact words. She conveyed that she wasn’t able to think of anything, something that fits what I have perceived before as her mind’s being a “complete blank” though she had never been able to articulate it.

When I repeated that I would like to help her, she said, “What can I do?” I told her it would probably help if she could get up and get dressed. I went on to say that I thought she would feel better after she got up. She surprised me when she said, “You’re probably right.” I was encouraged by that, but when I asked her to give me her hand to help her, she said she couldn’t do it.

I sat down on the side of the bed and talked with her a few minutes and tried again. She wasn’t ready. I gave her a little more time but continued to sit with her. When I tried again, she was cooperative. She was very uneasy as we walked to the bathroom and had the normal confusion about what to do once we were there. As we completed each step, she seemed to be more at ease. By the time we walked into the family room on the way to the kitchen, she seemed fine. We stopped a few minutes for her to enjoy the flowers and plants and to rearrange a few things on one of the tables.

Breakfast went well. She enjoyed her food, and the music I was playing. When she finished eating, I asked if she would like for us to spend some time together in the family room. She wanted to stay at the kitchen table. I don’t think I have commented on this before, but she seems very comfortable sitting there. One of the sitters told me that once she wanted to remain there after lunch, and they stayed there for a couple of hours.

That evening she was fine when she got in bed. Two hours later when I was about to get in bed, she had that look of fright on her face and asked who I was. She wasn’t reassured after my telling her. Then I thought of The Velveteen Rabbit. She wasn’t particularly interested, but I read it anyway. Midway through the book, she was making her audible responses to the passages I read. She was fine when I finished. I said, “I love you,” and she said, “I love you, too.” Another rough edge smoothed out.

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Sleep and Rest

Long ago I learned that people with dementia reach a point at which they sleep more. I’ve been mindful that would happen, but I wasn’t prepared for the way that is happening with Kate. I just thought she would simply start going to bed earlier and getting up later.

I’ve not been able to identify a consistent pattern for her. Until two years ago, she went to bed between 8:00 and 9:00 and got up early enough for us to get to Panera for a blueberry muffin between 9:00 and 10:00. In addition, she would rest a while after lunch. That would give us time to spend an hour or more at the café at Barnes & Noble before going to dinner.

When she started sleeping as late as 11:00 or 11:30, we stopped going to Panera. It was time for lunch. Along with that, our afternoons changed. She wanted to rest immediately after lunch. That would last as long as two or three hours which took up most of the afternoon. That put an end to our visits to Barnes & Noble.

This pattern changed with the arrival of COVID-19. Kate was losing her ability to work jigsaw puzzles on her iPad long before then, but she lost it completely after we began sheltering. That was her last self-initiated activity and had a significant impact on her sleep and rest. As recently as a year ago, she could easily spend 6-8 hours a day working her puzzles. That lessened during the day because she was either sleeping or resting, but she continued to work on her iPad for an hour or more each night. That meant she got to bed between 8:00 and 9:00.

Without her puzzles, she had nothing to do after dinner. I tried to interest her in looking at her family photo books, but she really needs someone to identify all the people. That was a time when I would try to catch a little of the evening news and get my shower. The result was her going to bed shortly after dinner. Since we have started eating out some evenings, that means she gets to bed around 7:30 although she is rarely asleep when I get in bed.

Several times a few months ago, she refused to get up when I tried to wake her. Before that, she wasn’t always eager to get up, but she never refused. Since that first time, there have been several other times like that. One day she remained in bed until 5:15 in the afternoon. Then she began to wake up early on a few mornings. I am now used to her getting up early almost once a week, sometimes twice.

Until recently, she has always gotten up rather quickly in the afternoon. The exceptions occurred in the last week or ten days. The first time happened when I wanted her to get up for dinner. After a couple of efforts within 15-20 minutes, I let her rest another hour. Then she got up agreeably.

Thursday afternoon last week we had hair appointments at 3:30. She was resting, not asleep, when the sitter arrived for me to meet a friend for coffee. I returned just a few minutes before we needed to leave. She was still resting. I told her it was time for our hair appointments and fully expected her to get up easily. I was wrong. She was just like she has been in the morning. She was very relaxed but also very firm in saying she wasn’t going. I called the stylist and told her I was having trouble getting Kate up and that I might have to cancel. I gave her another ten minutes and tried again. I could see it was no use and rescheduled our appointments.

I stayed in the family room with her while she rested. An hour later she was ready to get up. She was in a good humor. I feel sure she didn’t even remember that I had tried to get her up earlier. It wasn’t long before we left for dinner at Casa Bella and had a good evening. It was as though nothing had happened at all. We both felt good.

Saturday morning she was up very early. I had just gotten up and walked into the bathroom when I heard her moving. She had gotten out of bed. I helped her to the bathroom and took advantage of the early morning and confusion to give her a shower. When we finished, I helped her dress. She wanted to lie down on the bed. Because it was so early, I was happy to tell her that would be all right. That gave me time to comb my hair, shave, and dress. She remained in bed until time for lunch.

Sunday morning, she was up before 9:00. She was unusually cheerful at breakfast. Afterwards, we spent about forty-five minutes looking at one of her family photo books. It didn’t surprise me when she got tired and rested over an hour before lunch.

She awoke early again this morning, about 7:30. I went to her and found that she seemed wide awake and in a good mood. When I told her it looked like she was ready to get up, she said, “I don’t know.” We talked a few minutes. I told her I would be happy to help her get up and dressed. She said she wanted to rest a little more. It’s my day for Rotary, and I like to have her ready for the sitter who comes at noon. We had plenty of time, so I let her continue to rest. I don’t plan to get her up until 11:00. If she wants to stay in bed, I’ll let the sitter handle it.

The only thing that’s clear is that Kate hasn’t settled into a consistent sleep pattern. I’m not sure whether the present irregularity is something that is long-lasting, or she will gravitate to something else. As Kate herself is prone to say, “We’ll see.”

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Fun at Breakfast

Several times I have mentioned Kate’s arranging her food, plate, and utensils in what I have called “Food Art.” This morning at breakfast she created something and then played with it.

I fixed her blueberries and cheese toast which is rapidly becoming the replacement of blueberry muffins she used to get almost every morning at Panera. I serve her blueberries first while I prepare the cheese toast which I cut into one-inch squares. As I was getting a cup of coffee, she laughed and called me to the table.

She pointed to one specific piece of cheese toast. I didn’t see anything unusual, but it was obvious that she did. I said, “That’s something.” That worked. She laughed. It was clear that she saw something funny, and I laughed as well. Then she moved the piece closer to two other pieces near the center of the plate. As she did, she said, “Now he’s going over here.”

In the process, I discovered that she had already arranged the few remaining blueberries, pieces of cheese toast, and the seeds that had fallen off the toast itself. That was her work of art. Then she began to move all of them around as though she were playing a game. She did it slowly, but she was enthusiastic about what she was doing and very proud of herself. At one point, she popped a blueberry into her mouth and called my attention to it as it sat on her tongue just like a small child might done with her parents. She was having a ball, and I have to admit to enjoying watching her. She was happy.

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Tender Moments

I have a Twitter friend whose wife has early onset Alzheimer’s. She is in memory care, and it is only recently that they have been able to get together. The other day he posted a video of the two of them as he read Love You Forever. As he read, she leaned over and kissed him (through her mask, of course). His tweet said, “Special moments are not always captured but this one was.”

This struck a chord with me because Kate and I have so many moments like this that go unrecorded. Sometimes I try to describe them, but my descriptions never fully convey the feelings of those moments. The past few days they seem to have been more frequent than usual.

Two days ago, I posted a tweet about one of those moments that occurred at lunch on Sunday. Only two other tables were occupied in a restaurant that seats over 200. While enjoying the quiet and comfort of having the restaurant almost all to ourselves, Kate said, “I want you to know how much I appreciate all that you do for me.” I said, “I do it because I love you.” She said, “I love you too. <pause> Who are you?” It was a very tender moment that some might have taken as sad, but it was a special time for both of us.

We had a similar, but longer, experience the next morning. Kate woke up early. I was only twenty minutes into my morning walk (inside the house for those of you who are new to this site). When I got to her bedside, she was sitting on the edge of the bed, her mind seemed to be a complete blank. She said, “What am I doing here?” I said, “This is your home. This is where you live.” It didn’t take long to tell that she didn’t know me and that she was in a deeper fog than usual; however, she wasn’t frightened as she is sometimes. She was just confused about where she was, who she was, and who I was.

I told her we had been friends in college and that I could help her. That didn’t totally reassure her, but I was able to take her to the bathroom without her having any reservations. Once there, she didn’t know what to do. I explained that she should take off her underwear and sit on the toilet. She was still a bit unsure of me and didn’t feel comfortable doing that. I was, however, able to get her to brush her teeth. She began to feel somewhat more at ease with me, and I took her back to the bedroom to get her dressed. She was a little hesitant to let me help but consented. Throughout the process she seemed to get more comfortable. Several times she asked who I was. I gave her my name and repeated that we had met in college and been together ever since.

I took her to the kitchen where I poured her a glass of apple juice, and she took her morning medicine without a problem. I also turned on a Barbra Streisand album and selected songs that I know she especially likes. She commented on how much she liked the apple juice. She seemed pretty much normal though she continued to periodically ask who I was.

I fixed her some cheese toast. She liked it and wanted more. The music was still playing when she finished eating. Streisand and Neil Diamond were singing “You Don’t Bring Me Flowers Anymore.” Kate had closed her eyes and was engrossed in the music. She even mouthed some of the words.

When the song ended, she opened her eyes. Something across the table caught her eye. She said, “This is a nice room.” (Most of the time, she doesn’t know she is in her own home and admires it as though she is visiting a friend’s house or staying in some type of commercial lodging.)

I said, “Beautiful things. Beautiful music. <pause> And beautiful feelings.” She looked at me, nodded, and repeated, “Beautiful feelings.” Then she extended her left hand to me. I put my right hand on hers. She put her right hand on mine, and I followed with my left hand on hers. We sat there quietly for 5-10 minutes without saying a word, just listening to the music.

Kate still had several small pieces of cheese toast on her plate. She asked if I could fix more and that we could share. I did. The music ended, and I put on another album that we have always liked. Then we sat quietly enjoying cheese toast and the music for another twenty minutes or so before adjourning to the family room. Before getting up, she said, “I feel better.” I said, “I do too.”

Did she know who I was? I don’t know. I doubt it. What is important is that we had shared a special moment together. As Kate’s care partner, I’ve read a good bit about caregiving. I’ve learned a lot though never enough. A number of things have seemed especially significant to me. One is the importance of living in the moment. Another is mindfulness. I think this particular experience is a good example of both. I try to take advantage of moments like this and am “mindful” of how much each of us cares for the other and that there is a limit on our time together.

The day began with a rocky start, but in a rather short period of time evolved to that tender moment. It wasn’t that I had done anything of great significance. That wasn’t necessary. I just helped her get ready for the day, served her a breakfast she enjoyed, played music I know she likes, and gave her time to feel at ease with me.

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Kate’s Recent Ophthalmologist’s Appointment

A year ago, I reported on what I thought might be Kate’s last appointment with her ophthalmologist. The visit hadn’t gone as well as any of us would have liked, and the doctor said, “Well, I have good news for you. You don’t need to come back for a year.”

When we made an appointment for August 28 of this year, I couldn’t imagine that Kate would be up to another visit when the time came. I suspect her doctor felt the same way. I knew the potential problem would be Kate’s ability to follow the instructions of the assistant who does the initial eye test before the doctor comes in, but I felt it was worth it just to have the doctor examine her eyes.

This year we had the added problem of wearing a mask. I haven’t had a problem putting it on her, but she doesn’t want to keep it on. She usually asks if she can take it off at least once before we get inside a restaurant or her primary care physician’s office. Her ophthalmologist’s appointment can present a bigger challenge because we usually spend a longer time in the waiting room. We were lucky this time. She was called in with fifteen minutes. By then, of course, she was ready to remove it. Both the assistant and the doctor were very understanding and let her take it off it until she walked out of the examination room.

The real issue this time was the one we faced a year ago. She can’t follow instructions. That is actually worse now than a year ago. Thus, it was very difficult to get her to understand what she was supposed to see when the assistant said, “Tell me what you see.” She looked at everything but the letters used in the eye test. The assistant was very patient and finally got her to see the appropriate letters. Kate was also patient although it was clear that she didn’t understand why she was having to go through this.

Once again, she ultimately tested well, 20/40. That confirms what we have learned in past exams. Her eyes are not the problem. It’s the Alzheimer’s that prevents her seeing well.

We had gotten through two hurdles, the mask and the vision test. The next hurdle was more of a problem. The assistant needed to put drops in her eyes to dilate them for the doctor. Kate quickly closed her eye as she put in the first drop. The assistant was concerned that she didn’t get enough on the first try, so she wanted to try again. Kate was frightened. I got up and held her hand and told her to squeeze it. I’m not sure that made any difference, but we ultimately managed to get the drops in.

When the doctor came in, she had been briefed by the assistant and decided not to put Kate through any more than necessary. She did the pressure test for glaucoma. Kate handled that remarkably well. I was surprised that she didn’t balk at the bright light the doctor used to looked at her eyes.

We made an appointment for another year, but I am doubtful that Kate will be up to it again. Of course, we’ll see. I felt the same way last year.

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Still Having Good Times

I hope I’ve made it clear that Kate and I face more issues to deal with than at any other time since her diagnosis. I am also happy to say what I have said before. We still enjoy life and each other. This past weekend is an excellent example.

Saturday morning she was slow to get up. That meant we didn’t get to have our regular lunch at Andriana’s. Ordinarily, that would not have been a problem. We would simply have had a late lunch; however, this time I wanted to attend a virtual memorial service for a church friend who died unexpectedly. It started at 2:00, and I knew we would be unable to get home in time.

As it turned out, Kate hadn’t quite finished her lunch when it started. I had expected to have finished eating and that she would rest while I watched the service. Instead we watched it together at the kitchen table. She had no idea who our friend was, nor was she able to follow everything that was said. That didn’t keep her from finding the service to be meaningful. She was especially moved by the music and prayers. Periodically, she reached her hand out to me. When she does this, I put one hand on top of hers. She puts her other hand on mine, and I top it off with my other hand.

I have often attended services for other church friends but haven’t been able to do so for a while because they have always conflicted with my responsibilities for Kate. Before that, I had been touched by memorial services because they made me think of a time when we would have one for her. Given that, it isn’t surprising that I found both the service and Kate’s response equally touching. It was a special time for the two of us.

Thirty minutes later, we had a Zoom call with our son Kevin. That, too, was special. Most of his calls are on the phone, and often Kate has been resting or in bed for the night. The result is that she isn’t up for a conversation. To be sure, a Zoom call is a little confusing for her. Her vision problem is part of the reason. She has a hard time seeing anyone on a Zoom call. In addition, is the fact that she can’t quite comprehend that she could be seeing someone on a call. It took a while at the beginning of the call to get her to look at the computer screen and see Kevin. Even after that, she drifted away from the screen.

The good thing is that we were able to talk comfortably. Some of the time, she and I talked to each other. I felt that was a good thing in that Kevin was able to catch a glimpse of the way we relate to each other. It was very much like it would have been if he were not on the line. It was an hour of pleasure for the two of us and, hopefully, for Kevin as well.

The rest of the afternoon and evening went well, and we have added something new to our evenings. I ‘ve been reading a bedtime story just before turning out the lights. I started with The Velveteen Rabbit, but that is a little long. I learned about Love You Forever from a Twitter friend. His wife is in memory care now and still likes it. It is much shorter, and I found that Kate likes it as well. It is short enough that I added I’ve Loved You Since Forever by Hoda Kotb who wrote it for her adopted daughter. Together the two books work out just right for a bedtime story. I plan to add a few more. It’s a nice way to end the day.

Sunday was also a good day. Kate was ready to get up at 8:30. That gave me enough time to get her breakfast, spend a little quality time with her, and let her rest before lunch. The highlight came while we were still at the kitchen table after breakfast. I’ve mentioned before that she often cleans up her plate, but I don’t believe I have said much more than that. She uses her index finger to pick up the final specks of food and put them in her mouth. There are always some things she doesn’t like. She puts those on the table or her placemat.

She did something different yesterday. She likes to arrange things and often changes the arrangement of items on her bedside table and dresser. Not too long ago I reported on her food art. That was when she spent time placing her napkin, utensils, glass, and food in various places on her plate and placement. Yesterday, she did something similar.

I made cheese toast for her using Dave’s “PowerSeed” bread. As the name suggests, it is loaded with seeds, and a lot inevitably fall on the plate or placemat. I noticed her carefully studying her plate. She was arranging the fallen seeds on her plate along with her fork and one remaining bite of cheese toast. I complimented her on her artistic eye as she continued to arrange and re-arrange. She enjoys things like this, and I enjoy seeing her entertain herself. This and other simple pleasures provide us with plenty of good times.

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A Restaurant Experience The Other Night

Although Kate sometimes speaks harshly to me, it is far from an everyday occurrence. She has remained gentle and kind-hearted. Not only that, but she has rarely said anything in public that someone else might take as rude or inappropriate though on a couple of occasions, she has said something to me that surprised the people we were with. Recently, she spoke harshly to the woman who was shampooing her hair. This wasn’t anything serious. She was just frightened by the splashing water. I don’t think the hair dresser thought a thing about it.

A few nights ago at a restaurant, we had a different kind of experience. We had had a nice day. She had been in a good humor, and we had enjoyed our time together at lunch and at home where we toured the house, looked at some of her photo books, and listened to music. She had been resting when I told her I thought it was time for us to go to dinner. She got up easily and wanted to go to the bathroom. As we were about to leave, she looked like she was troubled though she was quiet in the car.

She was very uneasy walking from the car to the restaurant. This is something that is becoming common. Her vision fools her into thinking the pavement is much more uneven than it is, and she is quite afraid of falling. Once we got to the table nothing seemed right to her. She thought it was taking a long time to get our drinks and place our order though it hadn’t.

She was confused and not especially interested in anything she was served. I tried to find something she would like but wasn’t successful. Our server was someone who has served us a long time, but Kate responded as though she had never met her. She wasn’t rude, but she didn’t express any special pleasure in seeing her. That was a surprise. At one point, she was bothered by something in her teeth. The server asked her about it, and she opened her mouth to show her much the way a small child would do. The server asked me if they were her real teeth. Before I could answer, Kate said she had one tooth that wasn’t hers. I was stunned. It was one she got long before I knew her. We’ve replaced it one time, but that was probably twenty or more years ago. I haven’t heard her say anything about since that time, and I had almost forgotten. How in the world she remembered I’ll never know.

I wish I could remember all of the things that happened. I know it was very clear to the server that she was not the same Kate she had seen before..

Her mood didn’t change as we walked to the car. When I opened the car door for her, I started to take off her mask as I usually do. She was angry and snapped at me. I was surprised. She is always eager to take it off and often does so herself before we get to the car. I apologized. After getting in the car she was fine. She did, however, wear the mask all the way home and didn’t take it off until we were in the house. What brought on the episode at the restaurant and why she changed so quickly once in the car remains a mystery.

I haven’t observed anything like it since then although I have noticed an increase in her uneasiness walking to and from the car. That is especially true when going to a restaurant or to her hair dressers. I am sure the same would be true for other places if we were going other places. I think this is largely a result of her poor eyesight. On the other hand, I notice she is more distirbed or frightened by things she hadn’t expected. Noise is one of those. She seems to feel less and less comfortable in a world that seems stranger and stranger to her.

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Issues with In-Home Care

It was almost exactly two years ago that I first engaged sitters for Kate. Except for a handful of exceptions, the schedule has remained the same – four hours a day Monday, Wednesday, and Friday afternoon. We’ve been fortunate to have few changes among the sitters themselves. One of them has been with us the entire time except for the first week or two. That has been especially helpful since, until recently, she came two afternoons a week. We’ve had three or four sitters for Monday, but two of them were with us less than a month. I believe the continuity has been beneficial for Kate.

The past few months have been different. We lost our Monday sitter the first of June. Fortunately, the person who replaced her was a woman who had been with us forty weeks during our first year and quit to take care of her own health issues. I was glad to have her back.

Then our Wednesday/Friday sitter gave up her Wednesdays. She has been in great demand by the agency. That has been especially true during the pandemic. She was moving into a new house with her mother. She needed a break, and I understood. It turned out the Monday sitter was able to take the Wednesday slot. That has worked well.

After that, I had my own mini-crisis with respect to my blood pressure that was no doubt related to the increasing stress of caring for Kate. That led me to make a few changes. One of those was to add a sitter for Thursday. At first, it looked like that might be a problem. When I talked with the agency, I learned that they have been impacted by the pandemic. They don’t have as many people who are willing to accept assignments, and it is more difficult to recruit new ones. As it turned out, they were to arrange for our Monday/Wednesday sitter to add Thursday as well.

Over the weekend, the agency called to say that she had injured her back and would not be able to come on Monday. They called back that morning and told me they could not locate anyone else who could. Unfortunately, that was my day for Rotary, so I missed that.

It was also a day when I had a 2:00 appointment with my ophthalmologist. That meant I would have to take Kate or find someone else to stay with her. At first, I thought I might take her with me. I have done that on other occasions; however, she is bothered by wearing a mask. It is a challenge for me to get her to wear one from our car to a restaurant. Knowing that we might be there over an hour, I preferred to leave her home.

That prompted me to call someone we had met through our music nights at Casa Bella. Last fall, she started a business providing services to seniors. I know someone who uses her as a driver, but she does a wide variety of other things. I put in a call to her. She was available and came to my rescue.

I know that Kate didn’t remember her, but she must have seemed familiar. We sat together many times over the past five years. At any rate, they got along well, and Kate didn’t object when I left. She was resting when I got home two hours later, but according to my friend, things had gone well. I am glad I called her. She is an appealing person in whom I have confidence. If I encounter another situation like this, I won’t hesitate to call her.

The question now is “Will the sitter who injured her back be able to return soon?” I have no idea nor does the agency. Yesterday afternoon, I received another call from the agency saying they had been unable to locate anyone for today or tomorrow and are working on a replacement for next Monday. In the meantime, I placed a call to my friend who is available if the agency is unsuccessful. I have a dental appointment a week from today and told the agency about it. I plan to call my friend today to see if she could be a backup for that day as well.

Suddenly, my rather stable in-home care arrangement is no longer stable.

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An Experience I Couldn’t Handle

This morning I ran into a problem with Kate that had me stymied. She had just sat up after a short rest. I sat down beside her with the intent of looking at one of her photo books. It turned out that she believed she had to be someplace about that time. She said she was supposed to meet a group of women at her house. I didn’t think much of it because I am usually able to distract her so that she forgets whatever she has imagined.

This time was different. She thought she was running late and had promised “people” she would be there. Knowing that she didn’t have any obligations, I told her I didn’t think her meeting was today but tomorrow. If she accepted that, I was confident the whole issue would have been forgotten; however, she was sure that she was right. It was about time for lunch, so I suggested we order a takeout lunch and then I would take her to her house. She was fine with that and off we went.

On the way, she forgot that we were going to pick up our lunch. She became increasingly worried about being late. I assured her we would go directly to her home after getting our lunch. When we arrived, she didn’t recognize our house as hers. I mentioned that she might be thinking of her house in Fort Worth. She was adamant that I was wrong. I said, “I do remember that you have a meeting tomorrow, but I didn’t know about the one today.” She remained sure that it was today.

I told her we had lived in the present house for twenty-three years but that we had lived in two other houses in Knoxville before that and suggested she might be thinking of one of those. I added that other people were living in both of those.

She was almost in tears as we ate our lunch. She told me that she didn’t know what to do. I told her I wanted to help her but was in the same boat. I didn’t know what to do. Then she surprised me by saying, “It’s not your fault. You are trying to help me.”

Again, she asked if I would take her home. It was only thirty minutes before the sitter was to come, and I hesitated leaving but told her I would take her. I drove her by each of our previous homes. Fortunately, one was just around the corner and the other only two miles away. She didn’t recognize either one as her home.

She began to calm down as we drove. By the time we returned home, she was fine. The sitter arrived shortly thereafter. When we saw her, I said, “Look who’s here. It’s Mary.” Kate beamed and greeted her. They began chatting, and I got my things together and went to my office. She had suffered for almost two hours, but the crisis was over. I think the only thing I did that was helpful was to convey my desire to help her. None of my specific efforts to solve her problem was successful.

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Feeling Needy and Appreciative

I am sure I am not alone among caregivers in wondering how Kate perceives her own situation. I make my own interpretations based on what she says and does, but I would really like to know what she thinks and knows. One thing I do know is that she recognizes that something is wrong with her, and it often bothers her. As on other occasions, she made that very clear yesterday.

It was a day when she appeared unusually needy. All day long, she seemed to want to be with me, holding my hand and asking me what she should do about everything. It is not unusual for her to be dependent. It was simply a day of her feeling especially needy. Except for being uneasy when walking, she didn’t appear to be particularly disturbed. Even when I left her with the sitter, she seemed to accept my departure although she was disappointed and said, “Don’t stay too long.”

At dinner, she expressed her appreciation of my care for her. We were holding hands across the table. She said, “I can’t live without you.” With a concerned look on her face, she said, “I don’t know how I would get along if something happened to you.” It was a moment when I believe our thoughts were in sync. It was one of our tender moments when we convey as much or more to each other through our non-verbal expressions as the words themselves. That isn’t everything I would like to know from her, but it is very powerful. It reinforces my commitment to give her the best care I can.