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.

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.

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.

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.

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.

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.

Application for In-home Care

Today I took another step in the process of securing in-home care for Kate. At the moment, all we need is for someone to be here with her when I have to be gone. In particular, I have become uncomfortable leaving her in the early morning so that I can get to the Y. I plan to change my pattern and go in the afternoon. The plan calls for us to have someone here Monday from Noon to 4:00 and on Wednesday and Friday from 1:00 to 5:00.

With the changes that Kate is making I feel like making these preparations is appropriate. At the same time, I am becoming uneasy about breaking the news to her. Many times I have felt that the anticipation of problems is often greater than the actuality. I hope this will be the case. We are supposed to start next Wednesday. Our son will be here on Saturday, September 9. For that reason the following Monday and Wednesday, I have asked that they agency not send anyone.

Another little thing

Earlier this afternoon I posted a journal entry about little changes in Kate’s behavior that are becoming commonplace. This afternoon she exhibited another one. It is not the first time this has happened, but I don’t recall saying anything about it. Kate came in from outside where she had been pulling leaves. She was hot and sweaty. Naturally, she wanted to take a shower. Typically, she just goes to one of the bathrooms. She chooses the guest room bath most often. Today, she looked at me and asked which one I wanted her to use. I told her could have her pick. She started to walk away. Then she turned around and asked, “Did you say the middle one?” I said, “That would be fine.” This fits the increasing pattern of asking for my advice or permission.

Little Changes

Among the changes in Kate’s recent behavior, I have noticed changes in her mood. I had previously mentioned that she had had several days during which she was in an especially good mood and very cooperative. She seemed to accept just about any of my suggestions. Then she had a day when she was quite irritable. That didn’t last long, and we returned to our usual habits of a mixture of more neutral behavior with a few irritable moments when I make suggestions about things to wear or offer my hand when she is going up or down stairs or a curb. We had a good day in Asheville on Sunday. Then yesterday morning she was irritable without any precipitating action on my part. We had a lunch scheduled with several people from our bank. She was far from excited about that. She seemed to enjoy herself and chimed in several times to make fun of my talkativeness. This is something I didn’t mind at all. It was fun to see, and I think our friends at the bank felt the same way. It was, however, something she would not have done before her Alzheimer’s. It was one of those times that her brother refers to as speaking with his “filter turned off.” I’ve learned that he means that he is insensitive to the possible impropriety of his comments.

This morning as she was getting out of bed she asked me if she should make up the bed. I don’t ever recall her asking this before. The only thing I can relate it to is that she knows our housekeeper comes once a week and washes the sheets. On those days, she did not make up the bed. Over the past 2-3 years, she hasn’t regularly made up the bed on any day. This is worthy of comment although I don’t believe I have mentioned it before. Her mother had taught her to always make up the bed. She has done so throughout our marriage until Alzheimer’s. Another connection to asking me this question is that asking my advice, permission, or confirmation is becoming another of those little changes that are taking place. This one just surprised me.

When we returned from Panera this morning, she asked me if she should wear a cap when she went outside to pull leaves. This was the first time she has asked this. It is an overcast day. Perhaps, she was really asking herself if she needed a cap.

When we got home from lunch, she asked me if she could use the clippers while she was working outside. As always, I told her she could.

Symptoms

We drove to Asheville for lunch, a play, and dinner. We had a nice lunch and Jenny, who works the front desk, gave us an upgrade on our room. A few minutes ago we got back from the play. Before the show began, I got Kate a bottle of water that she took with her into the theater. At intermission, the man in front of her said something to her about squeezing the bottle and making noise during the first act. She said she didn’t squeeze it. He said, rather sternly, “Yes, you did.” She said she was sorry. A few minutes before the second act began I leaned down to him and told him that she has Alzheimer’s and that it was my fault that she had made the noise and that I just didn’t hear it (which was true). At the end of the performance, Kate tapped him on the shoulder and said something about her mother’s having gone to TCU. Then she asked me what her mother’s maiden name was. It was a good thing I had told the man about her diagnosis. He smiled and asked her if she enjoyed the performance. She told him she had. Then we moved on.

As we were walking back to the hotel, she said, “Where are we?” I said, “Do you mean what city are we in?” She nodded. I told her Asheville. She just said, “Oh.”