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More Signs of Change

Kate seemed unusually confused at lunch today. As we were waiting for our food, she pointed to several military from Fort Jackson which is very near where we live. Then she asked me the name of the base in Fort Worth. I told her that it is the Naval Air Station. .

After a quiet moment or two, I told her that tomorrow is Brian’s birthday. He is our oldest grandchild. She asked, “Who are his parents?” I told her that Kevin and Rachel are his parents. I mentioned that Brian is now 19 and how it didn’t seem that long ago that we had flown out to Texas when he was born. As we talked a little more, she asked, “Who are his parents again?”

She also asked me how long we had been married. I told her we had been married 54 years and that it would be 55 next May. We started talking about other things, and then she asked again how long we had been married. As I sat across from her and listened to her confusion, I felt a deep sense of sadness. There were moments when I fought to hold back the tears.

On the way home, she said she wanted to pull leaves. I told her I knew that was something she really liked to do. She acknowledged that and said, “Of course, when I start my two albums, that will keep me busy.” It is interesting that this comes up once in a while even though it has been about two years since she has done anything on them. At least she said “when I start” on my albums. She must recognize that she hasn’t been working on them.

When I pulled into the driveway, she asked if she could pull leaves. Then she asked about using clippers. After that she asked if she should wear a cap and where she should start. This is just a continuation of a pattern she has established over the past few weeks.

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How Am I Feeling?

I am discovering that successfully getting over a couple of hurdles doesn’t mean that the challenges are over. I am still feeling anxious even after last week’s visit with the nurse and Wednesday’s first visit with the sitter. Today is the first day that I plan to leave Kate with a new sitter who comes at 1:00. I plan to show her around the house and try to set the stage for both of them. I want Kate to be able to continue doing what she normally does at home, pull leaves, work on her iPad, or rest. Since Brittany will be there 4 hours, this will be a bigger challenge for Kate than she is accustomed to. When I am there for a 4-hour period, she might pull leaves for an hour, take a shower and change clothes, and then be ready to get out of the house. I may give Brittany $20 and ask her to take Kate to Panera if she would like to go. That could make it easier for Kate, not only in breaking up the day but also gaining a better comfort level being with Brittany.

Until now, I had always thought that Kate might be especially resistant to being at Panera with a caregiver, but she seems less bothered by things than in the past. The positives could outweigh the negative.

I have tried to analyze why I am feeling so anxious which is not a characteristic of my personality. I believe there are two things that account for it. First, I have worked hard and have derived pleasure out of trying to make Kate’s life run as smoothly as possible. I believe I have done a good job of that, and it is difficult for me to believe that a stranger can come in and be as attentive. In connection with that, I don’t want Kate to experience any difficulty knowing that a stranger is now there to handle things I would have done. In other words, I feel anxious simply with leaving her in the hands of somebody else and also about Kate’s reaction to my leaving.

The second thing that is affecting me is the more ominous one of being a sign of a bigger change in our lives. I have tried to spend as much time as I could with her since her diagnosis while at the same time maintaining many of the activities that also give me a sense of fulfillment. Now Kate is forgetting lots of things that were significant to her in the past. Just this week, she asked me where our son lives. I told her Lubbock, and she gave her usual response, “I knew that.” She really does, but those things slip away so easily now. She followed that by confusing it with Knoxville.

This is to say I feel her slipping away more clearly now than in the past. There are almost daily incidences that let me know just how far along she is. In the past, I have wanted to take advantage of every moment with her. Now those moments become even more precious, but I am facing the reality that there isn’t anything I can do to stop this progress/decline. The only thing I can do is to try to hang on to each remaining aspect of our relationship; therefore, leaving her with someone else for 4 hours a day 3 days a week is tough.

To be truthful, whether or not I have a caregiver for Kate does not change her prognosis. I know that she will still slip away regardless of what I do. I believe I have maintained a very rational outlook toward Kate’s illness. That has carried me a long way. As the readers of this journal know, I have had periodic low points in the past. The one I feel now is not unexpected, and I believe it is appropriate. I am not going to wallow in it, but I can’t deny it either. I would be horribly dishonest if I did. Above all, I have wanted this to be an account of our real experiences and not a work of fiction. At least to me, the reality of our situation has never been more vivid, and I know it will only get worse.

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Get-Acquainted Visit with a Sitter

I can breathe a little easier, at least for the moment. The get-acquainted meeting went well, at least in terms of Kate’s response to the sitter. I did not tell Kate that anyone was coming. When I saw the sitter drive into the driveway, I went out to greet her. I asked if she had been briefed on the fact that Kate didn’t know about my making arrangements for a sitter. She had. I brought her inside and asked her to take a seat in the family room and went to get Kate who was on her iPad in her room. I told her we had company. She didn’t ask any questions or look surprised. She just put on her shoes, got up, and walked with me into the family room.

I introduced them. Kate asked Brittany to take a seat and then took a seat across from her. Kate very quickly assumed the role of hostess. She asked Brittany if she were from Knoxville. It turns out that she moved here from New York about ten years ago when her mother was stationed at Houston Army Base in Kingston.  In a few minutes, there was a slight lull during which time I jumped in with a question or two. We learned that she is 24, has a 20-month-old boy, and that her mother and at least two siblings live in Knoxville.

After that, I asked Kate if she could tell Brittany about our meeting and courtship. She hesitated, and I asked if she could remember where we first met. She did. That led into a discussion of our first and second dates, our courtship, and the role of the funeral home where I was working at the time.
From there we had a little back and forth of our telling about our lives and family and her telling us more about herself. When it looked like we might be running out of steam, I asked Kate if she could tell Brittany about the kinds of things she does with her time. At first, it looked like she would not be able to think of anything. I thought she might mention the yard. What she said was that she was working on photo albums. She started describing what they are like. One of the albums that she and her brother had created about her mother’s family was sitting on the coffee table in front of me. I picked it up and handed it to Kate and said, “You could show her this.” When Kate opened up and started to show her what the book was like, she pointed out a picture of her mother with her mother and father and sister. Brittany commented on how much Kate looked like her mother. It didn’t take long for Kate to become engrossed in the album.

Since they seemed engaged, I decided to step out of the room while Kate showed her the album. I went into the kitchen and got something to drink and to work on a letter I wanted to send to someone at church. Kate was really enjoying the album and being able to share it with someone.

I didn’t stay away long, maybe ten minutes. I went back into the family room where they were seated. It had been about an hour and twenty minutes since Brittany had arrived. I decided we had learned enough on this visit. Before closing the visit, I said, “Kate, you haven’t told her about how much you enjoy working jigsaw puzzles on your iPad and your pulling leaves outside.” I thought it would be good for Brittany to know that because there could be plenty of times that Kate would want to pull leaves or use her iPad while she is here. After that, I thanked Bri for coming and said, “We’ll look forward to seeing you again.” Kate and I escorted her to the door and told her good-bye.

After closing the front door, Kate turned and gave me a puzzled look and asked, “What was that all about?” I said, “Well, we were interviewing her. Do you remember how I have told you that I really hate to leave you alone when I need to go someplace? I thought it might be nice if I had someone who could stay here while I am gone?” She asked, “How did you know her?” I told her that I didn’t, that this was my first time to meet her. Then she asked how I found her. I told her about the woman from agency we had met at Panera 2-3 weeks ago and that she had told me about her. Kate seemed to accept that and didn’t ask any more questions. She didn’t look disgruntled in any way. She said she wanted to get something to drink and then go outside. She got her drink, but she never went outside. I guess she forgot. She went back to her room to work on her iPad. She is still working there even though it has been almost an hour and a half since the sitter left.

Earlier I mentioned that the visit went well, at least from the way Kate responded. That begs for a little more explanation. That has to do with my own reaction to Brittany. She is an attractive young women, but I had hoped for someone that might be a little more (maybe a lot more) extroverted. She wasn’t quick to engage in conversation. Kate did a good job initiating conversation, but there is only so far that she can go. I am glad that I was here to fill in the blank spaces in the conversation, not just by my own comments but through questions or prompts for both Brittany and Kate.

During the visit and since, I have considered that a more introverted personality might not be a bad thing. I know that Kate would tire of someone who talks a lot. That is great for a short time, but big talkers wear her down. I know, she often asks me not to talk.

My plan is to let the agency send her again on Friday and see how that goes. She is supposed to stay for four hours. I plan to go to the Y during that time. That should be a better test for how they get along. I am going to encourage Kate to feel free to either work on her iPad or work in the yard. I will convey the same thing to Brittany.

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A Surprising Positive (?) Change

Much earlier in Kate’s journey, I commented on the fact that she didn’t ever put up her clothes. I have pictures showing clothes stacked on the bed in her office, on the floor, and in two of the guest rooms. This continued for a very long time. I am glad to report that she is considerably better about hanging up her clothes now than in the past. That doesn’t usually happen at night when she changes into her night clothes. At that particular time, she almost always throws her clothes on the floor or the chair beside the bed along with her shoes and socks. Sometimes she picks them up in the morning or later in the day. Other times I get to them first. Over the past two-three years, I have made a point to try to pick up her clothes wherever I find them and put them back in her closet. But I don’t want to take away from the fact that she is actually working hard to keep things straight.

I don’t really know how to account for the change. I consider it positive for two reasons. One is that it makes it a lot easier for both of us to find the clothes she wants to wear. Secondly, I think it is good for her to have a responsibility, something to do besides working jigsaw puzzles and pulling leaves. On the negative side, I also imagine that she is struggling to fight the more natural tendencies of her Alzheimer’s. I see it in moments when she tries to figure out how to put on a night gown or a top. On occasion, I offer my help. She almost always turns me down. These are among those moments when I feel so sad for her. I know it takes an effort for me to face a losing battle trying to prevent or solve problems she has. I can’t imagine how it feels to have them myself.

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A Twist on a New Pattern

I have commented several times about Kate’s having developed a habit of asking my permission to pull leaves, specific parts of the yard in which she can work, and to use her clippers. Today, she opted for another variation of this. As we got near the house, she asked, “What can I not do?” She was asking about pulling leaves. I told her that would be fine. She asked, “Where?” I told her anywhere. Then she said, “Clippers?” When I told her that was all right, she asked one final question. She just held up her cup. She was asking if she could take it with her to the yard. I said yes, and she looked amazed.

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Taking Stock: How am I feeling?

I tend to think that how I am doing/feeling comes through my posts without my explicitly speaking to that point. Once in a while, however, I feel the need to address the issue head on. This is one of those times.

Considering everything, I still believe I am doing well. Although I experience the many frustrations that accompany this illness, I don’t feel worn down in anyway. The most significant emotion I feel is sadness. I don’t see how anyone can watch his spouse gradually lose all (and I mean all) of her abilities to function. Recently, as I have become increasingly reluctant to leave Kate alone, I have felt torn about engaging someone to be with her when I need to go out. For a long time I have wondered how I would know when that time was right. As it turns out, the kinds of changes that I have described in my recent posts have led me to feel now is the time. Intellectually, I am not having a problem with that. Emotionally, it is more difficult to accept.

Two related issues account for this feeling. One is how I can introduce this to Kate without making her feel bad. From everything she says, I believe she doesn’t realize just how far she is into this journey. I certainly don’t think she feels the need for someone to stay with her. On the other hand, as I have noted earlier, she also seems more accepting of whatever I plan for her. My explanation is that she is so tuned out of things going on around her that she doesn’t really understand and just accepts what happens. I was quite concerned about how she would respond to the nurse who came to our house yesterday. Even though I told her that the nurse was coming in connection with her Alzheimer’s diagnosis and the nurse asked a lot of questions she would not be used to answering, she never got suspicious or upset about why the nurse had come or what was to follow. She just seems to have lost her ability to process these events. That is definitely true about other things.

Now that the nurse’s interview is over, I wonder how she will respond to her first meeting with a sitter this coming Wednesday. I am generally optimistic because of yesterday’s experience with the nurse and also her previous meeting about 10 days ago with the social worker from the agency that I have engaged to provide a sitter. At the same time, I am still a bit uneasy and will be glad to have this first encounter behind us.

The second issue that concerns me is the implications of bringing in a sitter for me. It has now been 6 ½ years since Kate’s diagnosis. I have devoted myself to her throughout that time. This is something I was glad to do. We have both derived pleasure from the many things we have done. Throughout this time, I have gradually had to make changes in my own life to meet her wants and needs; however, I have wanted to do this and have never felt that I have sacrificed my life for hers.

Introducing a sitter is a sign of a real change in our relationship. Whereas she has depended on me in the past, she will come to increasingly depend on others. This represents a loss to me not just in my no longer being able to do as many things for her but also the beginning of the loss of our normal marital relationship. Life together is never going to be the same again.

Of course, the changes started long ago even before her diagnosis. Right now, however, I see a clearer departure from the earlier days. We are now entering a period that is what most people think of when they hear the word Alzheimer’s. I have heard and read about the caregivers of Alzheimer’s patients grieving the loss of a spouse or other loved one before their actual death. That is what this feels like to me. This feeling is not brand new. I have always loved music and have found it to be especially comforting since her diagnosis. I have never been one to pay much attention to the lyrics of songs, but the lyrics of some songs have caught my attention and have had a different meaning than the songs themselves then intended by the writer. I can think of two examples. The first is “If I Should Lose My Way, Please Wait for Me.” I can’t hear this without thinking of Kate’s literally and figuratively losing her way in the depths of Alzheimer’s. Recently, I heard another one called “Losing You.” The phrase “I’ll never get over losing you” spoke to me in way that I would never have noticed before.

I don’t mean to exaggerate this feeling of sadness, but I wouldn’t be honest if I didn’t acknowledge it. It seems to characterize my response to Kate’s disease than what I hear from many other caregivers. That is a major reason I say that we have been very fortunate. We still have not had to endure some of the worst aspects of Alzheimer’s. It makes me much more sympathetic for those who do.

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Resting Easy after Interview with Nurse

It turned out that our meeting with the nurse related to the approval of in-home care for Kate went very well. That is, it went well in terms of the way Kate handled it. It unfolded exactly the way I had hoped. Over the past few months, Kate has become more accepting of whatever I tell her we are going to do. As we were coming home from lunch at 2:15, I told her that we had a 2:30 meeting with a nurse that works with our insurance company and that it was in connection with her Alzheimer’s. I don’t recall that she said anything, but I do remember that she was accepting. She did not raise any questions or indicate displeasure.

When we got home, she brushed her teeth. Then she picked up her iPad and started working a jigsaw puzzle in our bedroom. When the nurse arrived, I went to the bedroom to tell her. She came out and greeted the nurse as she would any guest whom we might have invited for a visit. She was very cordial. She was not uneasy at all.

The nurse indicated that she was here to gather some information in connection with out long-term care insurance. As I had suspected, this did not cause Kate to raise an eyebrow. The interview last about an hour and ten minutes. She asked lots of questions from a document on an iPad so that when she was finished it was ready to be uploaded to her company who works for Transamerica.

Now we come to the part that was tough for me to take. The nurse began with the routine background information (address, phone numbers, Social Security number, age, height, weight, etc.) From there she went to characteristics of the home, how long we had lived there, the fact that it was a single story house, several questions about the bathroom, etc. There were also a battery of medical questions (hospitalizations, prescriptions, doctors, date of diagnosis, etc.)

Then the nurse gave her one of the standard tests of memory/dementia. These involved math (subtracting 3 from 20 and so forth to zero), remembering three words (table, chair, and floor), drawing a picture similar to one she showed Kate), day of the week and date, current President and previous President, etc.

Kate didn’t know how old she is, or how much she weighs, or her SS#. Her greatest frustration (and mine) came on the match questions. Several times she asked if she had to answer those. After recognizing that Kate was unable to do so, the nurse moved on. When the nurse gave her the three words to remember and emphasized that she would be asked again what the words were, Kate told her that would be easy and repeated the words. It was a very short time when the nurse asked her for the words. Kate couldn’t remember any of them.

Besides my anxiety about how Kate would react to the nurse, I was also concerned that Kate would do so well that the nurse might think Kate does not need someone to stay with her. Such was not the case. It made me very sad to see her struggle with these questions. It was also disturbing to see how upset Kate was getting. Kate really tried to do the right thing and was not nasty with the nurse. Near the end, Kate said, “You really have a lot of patience. I bet you sometimes get frustrated with people doing this.” Kate would never have let me go through all the questions the nurse asked.

As I was sitting there, I thought about the times I have read about a caregiver like me observing a similar test of her loved one and being so surprised that she was making so many mistakes. This was very different for me. I have observed enough of her behavior to know that she couldn’t handle these things. It is hard for me to imagine that many caregivers themselves are fooled by how far along their loved ones are when they take them for diagnosis.

The good news is that this hurdle is over. I do not expect any problem with the approval process, and Kate is not perturbed. It is as if the interview had never happened. The next hurdle will be meeting the sitter next Wednesday. I am a little more optimistic now but know that I could be fooled.

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New Step on In-Home Care

After we returned home from dinner last night, I received a phone call from a private nurse hired by Transamerica, our long-term care insurer. She wanted to set up an appointment with Kate in connection with my application for her care. I knew that someone would be calling and happy that it had occurred so quickly after my initiating the claim on Tuesday. We scheduled a meeting for 2:30 this afternoon. I told the nurse that I had not told Kate about my application for care or that she would be receiving a visit from a nurse. I also told her that I believe Kate does not feel that she needs someone to stay with her right now. In addition, I gave her a little information about Kate. More specifically, I told her that she can get along pretty well in short social encounters and that many people never suspect her diagnosis.

This is one of those big moments for me. The other will be when the sitter comes for her first visit next Wednesday. I spoke with the agency providing the service yesterday and explained to her that Kate does not know that I have made these arrangements. I wanted to make sure that the companion made the transition a smooth one. The Wednesday meeting should be shorter than the normal 4-hour time period that I have requested. I thought that might make it easier for Kate. Something else that may help is that our son arrives a week from tomorrow (Saturday). For that reason, I have asked that the agency not send anyone while he is here since his main purpose for coming is to be with his mother. That means that Kate will have about a 1 ½ – 2-hour get acquainted period with the sitter on Wednesday and a 4-hour one on Friday. Then she will not have the sitter again until the following Friday. I hope that will make for a gentle smooth transition. I’ll be a bit nervous until I see Kate’s response. Kate has become so accepting of many things that I think it is possible that this may be a bigger event for me than for Kate. I have my fingers crossed.

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More New Things

For a long time I have been sensitive to Kate’s behavior when we are eating out. Up until last night, she hadn’t done anything that was likely to be noticed by anyone who was not actually sitting at the table with her. The thing that has bothered me most is that she often arrives at a restaurant looking as though she is tired. Getting out of the car and walking into the restaurant she often looks sad and tired. When she is seated, she often sits there with her eyes closed as though she were going to sleep or is asleep. This behavior doesn’t bother or disturb anyone but me. I tend to feel self-conscious. I wonder if the servers and people around us might think the two of us have had a serious quarrel.

The other thing that has bothered me is her use (consumption) of paper napkins to soak up her saliva. Fortunately, several of the restaurants we patronize give us an extra supply with our meal, sometimes before. Often, we have only a cocktail napkin under each of our drinks. She goes through hers rather quickly and then often asks for mine. That is consumed quickly as well. Along with the salivation, she sometimes burps. It is not very loud but loud enough to be heard at an adjoining booth or nearby table.

Last night, she did something new. Kate had ordered a pasta entrée, and the server brought her a small dish of Parmesan cheese before our meals arrived. I noticed that Kate took several spoonsful and ate them. When her pasta arrived, she dumped the remaining cheese on top of the pasta. The latter is not unusual. She typically puts the entire dish of cheese on her pasta.

This afternoon she has been outside working in the yard. Most of the time she works in the front flower beds pulling leaves. Today she has been out back. At one point, I went out and noticed that she had cut one of the hydrangeas to the ground. I commented on it. She asked if that were all right. I told her it was fine. I just wondered if she remembered that they will die back for the winter and grow back next spring. I also said they would live nicely for another 2-3 months. I just looked outside. It looks like she cut down two plants and left one.

Yesterday she came in the backdoor and called me. I saw that she had brought a man with her. He told me that he does yard work for some of our neighbors. Then he took me outside and showed me the numerous shrubs whose leaves Kate has pulled off and have not grown back or not grown back fully. He told me they needed to be taken out and that he would do it. I told him I had plans and that I was not going to take them out right now. Kate was with us or I would have fully explained why I didn’t want him to do anything. My plan is to wait until Kate is in a later stage of her illness and to have all of them taken out, the flower beds cleaned out, and have a landscaper put in something new.

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Trouble with the iPad

Kate and I are seated at a table at Barnes & Noble where I have been checking email. She is working jigsaw puzzles on her iPad. It is rather peaceful here. That is an improvement over this morning when we were at Panera. That has nothing to do with the place but with Kate’s problems working her puzzles this morning. She must have stopped a dozen times because she kept hitting a button that took her out of her puzzle. Each time she would close up the cover on her iPad and put it down on the table. She never once asked for my help. Each time, I reached over to pick up the iPad and get her back to her puzzle. She was very discouraged. In fact, I thought that she would give up and want to go back home. That never happened. Finally, it was getting close to 11:20; so I suggested we go to an early lunch. She accepted.

As we walked out, she walked very slowly. Her facial expression looked as though she were struggling to make herself walk. She didn’t speak on the way to lunch, nor during lunch. I didn’t speak much myself. I just let her relax. As she so often does when we are out to eat, she closed her eyes and appeared to be going to sleep as we sat there waiting for our food.

She pulled leaves for a while after getting back home. It didn’t last long. She came inside and worked on her iPad in the family room, something that doesn’t often occur. I was finishing up a letter to a doctor at Kate’s family practice. He is actually the one who started the practice. I have been trying to contact her doctor since June 26 without success. Something strange is going on. I decided to write the senior doctor to ask his help. I first knew him as a neighbor. Later we had contact in connection with my service on the hospital’s foundation board. I have to believe I will hear something by early next week. He won’t get the letter until tomorrow or Friday. My concern is Kate’s salivation problem. Kate still is not swallowing her saliva. Even as I said this, it dawned on me that I have not seen her spitting out any saliva while we have been here. That is a good sign. It may indicate that she only spits it out when she thinks about the saliva.