A Change in In-Home Care

Until sheltering came into our lives, we have had the same schedule for in-home care for the past two and a half years. One sitter comes at noon every Monday and stays until 4:00. That allows me to make my regular Rotary meeting, go to the Y, run errands and attend occasional meetings for the balance of the time. Another sitter comes on Wednesday and Friday between 1:00 and 5:00.

I have always preferred the 1:00 time for both sitters, but that wouldn’t allow me to make Rotary. Our club suspended its meetings in April, and I took advantage of the change to request that the Monday sitter come at 1:00 until the resumption of our Rotary meetings. I thought that had worked fine, but last week the Monday sitter showed up at noon just as Kate and I were getting ready to leave to pick up a takeout meal from Panera. It turned out that she had thought that we had made the change only for the month of April.

In our conversation, I discovered that she has other commitments after 4:00 and had only been staying until 5:00 to help me out for a short time. As it turned out, I haven’t felt the need for her during this time. I continued the service for two reasons. First, she has been with us over a year, and I didn’t want to risk losing her if I temporarily discontinued the service. Second, I didn’t want her to sacrifice the income in case she couldn’t find something else until we started again. When I finally understood the situation, I told the agency not to send anyone on Monday until Rotary begins its regular meeting schedule.

So, for the month of May, I only have a sitter two days a week. Ironically, I feel good about this arrangement. While sheltering, I have only run sporadic trips to the grocery or pharmacy and taken a short walk around the neighborhood. I’ve spent the bulk of the time at home. As a result, I haven’t worried about getting Kate up as early as I had been. Quite a few times, we have been eating our lunch when the sitter arrived. She would take a seat in the family room until we finished eating. After that, Kate usually rests for the balance of the afternoon, and I have worked on other things and made phone calls without any interruptions. I think Kate has been comfortable with the arrangement as well. This means there is never any abrupt time when I am leaving for an extended period of time. I generally say something like, “I’m going to run to the grocery and will be right back.” That is something she has been able to accept without any problem. Thus, I have felt more relaxed during our sheltering.

The question now is what is going to happen when Rotary begins. As it stands, the agency will return the same sitter when I tell her it’s time to change back to the noon to 4:00 schedule. That assumes that the sitter has not been assigned to someone else. I am wondering about the possibility of changing sitters even if the same one is available. I have never felt as comfortable with her as I do with the other sitter. On the other hand, Kate doesn’t require a lot of attention. She rests most, and sometimes all, of the time the sitters are here. Like most changes of this nature, I can’t be sure that the replacement would be better, perhaps not as good. Of course, I could try another one or several, but that would mean introducing Kate to more than one new person. I am leaning toward accepting the same sitter if she is still available, but I have almost two weeks before I have to make a final decision. We’ll see what happens.

Update on In-Home Care

It’s been a while since I’ve commented on Kate and her sitters. That’s a good sign. Everything has been going well. Yesterday was a good example. Kate was up much earlier, and we returned from Panera about 10:15. She was tired and made her way to the sofa as soon as we walked in.

The sitter, Cindy, arrived about 11:50. She is always early. I like that because it gives me a little more time to get to Rotary before 12:30. I met her at the door and walked with her to the family room. Then I walked over to Kate and said, “Guess who’s here? Cindy. And she’s taking you to lunch.” Kate immediately sat up and with a big smile told her she was glad to see her.”

When I got home, I walked into the kitchen and said, “I’m back.” I heard Kate say enthusiastically, “Good.” She was happy to see me, but it didn’t seem like she was greatly relieved. That kind of departure and return home is what I like to see. I want her to feel comfortable with her sitters. The more comfortable she is the better I feel about leaving her.

That has taken a long time. In fact, it has been two years and two months since I first engaged the sitters. It is only in the past 4-6 weeks that I have felt good about leaving. Sometimes she still asks, “What are we going to do?” (as she did yesterday) when I am ready to leave, but she doesn’t seem uneasy about my departure. On Mondays, I tell her that Cindy is taking her to lunch. That seems to take care of any concern she has. Sometimes she says, “I don’t have any money.” I tell her that Cindy can pay with a gift card I bought.

I started with two sitters, one on Monday and the other on Wednesday and Friday. Each visit is four hours from noon until 4:00 on Monday and 1:00 until 5:00 the other days. When I began, I fully expected to increase the number of days and/or the amount of time they are here. I haven’t because I don’t feel the need. Our insurance covers eight hours a day. That gives me plenty of room to increase Kate’s care at no cost, but I still enjoy being with her.

Having said that, I do find that my personal time is declining. That is true largely because I need to be more directly involved in entertaining her. That relates to her not using the iPad as much. Some of that is offset by her resting more, but I don’t want her to rest solely because she doesn’t know what to do. Given these changes, I may find myself open to adding more time in the next six months or so.

We have been lucky in that Mary, the Wednesday/Friday sitter, has been with us since almost the beginning. That continuity has made me feel better. I think it has been good for Kate as well. We have had several changes with our Monday sitter. Cindy, the current one, has been with us several months. I am comfortable with both of them and hope they will be around for the forseeable future.

Kate’s Latest Insurance Evaluation Interview

Tuesday afternoon, we had an appointment with a nurse representing the insurance company that provides our long term-care insurance. They send a nurse out every six months to conduct an evaluation interview with us. It is part of their due diligence effort to prevent fraudulent claims. I understand why they do it, but these are often uncomfortable interviews for Kate. They ask many questions that she simply can’t answer. In addition, she thinks many of the questions related to activities of daily living are silly. They include things like “Can you turn the shower on and off?” “Can you dress yourself?” “Can you touch your toes?” And “Do you have any problem walking?” Although Kate recognizes her dependence on me, she still thinks of herself as “normal.” A lot of the questions call that into question. To say the least, they annoy her. It is also awkward for me since I want to give them accurate information and don’t like to say that Kate can’t do things that she tells the nurse she is able to do. Most of the time the nurse looked to me, and I was able to shake my head or silently mouth to confirm or deny what Kate told her.

Coincidentally, I read a section of A Most Meaningful Life: My Dad and Alzheimer’s by Trish Laub that very morning. She and her dad had a problem with these interviews as well. Her father suffered depression afterward. She contacted the insurance company and told them they would not accept such evaluations in the future. I had this in my mind when the nurse arrived at our house.

This was the second visit for this particular nurse. I had spoken with her in advance of her visit and explained that Kate is now at Stage 7. She wasn’t familiar with the stages and didn’t remember having seen Kate before or that she has Alzheimer’s. I found that disappointing. As a nurse doing evaluation of someone with Alzheimer’s, it seemed to me that would be a given. On the phone she agreed not to go through the routine dementia test questions (“What day is it?” Who is the President?” etc.), but it became clear that this would have been a better interview if I had been answering the questions without Kate’s presence. Late in the interview, I asked if she and I could talk privately. Fortunately, she wanted to see our bathroom to check it out for handicap accessibility. We left Kate in the family room, and I was able to respond more openly to her remaining questions. She closed the interview after that. I will make sure that I exercise more control over the next interview.

Although Kate was quite annoyed at many of the questions, she didn’t immediately give any signs that it had a negative impact on her. She started to work on her iPad. Then she said she was tired and got in her new recliner to rest. It wasn’t long before she asked if we couldn’t go out to get something to eat. It was only 3:30, but we hadn’t been to Barnes & Noble in several weeks. I took her there. She didn’t say anything more about eating, so I only got her something to drink. In a short time, she wanted something to eat. I got her a cookie. As soon as she finished it, she wanted to go home. She had been working on her iPad and was frustrated, but it also seemed like she was restless and needed a change. I don’t ever recall her being this way before. Coming off the interview, I couldn’t help but wonder if the experience might have affected her mood. There is really no way to know, so I am withholding judgment; however, the change did occur after the interview was over even if it wasn’t immediate.

We were home about forty-five minutes before going to dinner. She enjoyed the dinner but wasn’t as cheerful as usual. When we got home, she worked on her iPad for a while but got frustrated and quit. She decided to go to bed. While brushing her teeth, she said, “Maybe I’ll be all right in two or three days.” I said, “You’ve had a rough day.” She agreed.

I am still left wondering how much, if any, the interview influenced her. I know that she has trouble working her puzzles anyway, but she was especially discouraged. The good thing is that she still felt optimistic that, perhaps, she would get better. This is not unusual. Many times, when she is trying to remember things, she mentions improving in the future.

Once again, I take note of the fact that even at this stage of her disease, she knows something is wrong with her and is still bothered by it.

Update on In-Home Care

It has been two years since I began in-home care for Kate. I spent about eight or nine months considering the move. Then I agonized over how to tell her. Because of her memory problem, I decided there was no reason to bring up the subject too far ahead of time. I told her a few minutes before the sitter arrived for her first visit. She asked why I was having someone stay with her. I told her I was feeling uneasy about leaving her alone and that I would feel better if someone were with her. She said, “Okay.” That was it. I was surprised at how well it went.

We started with sitters three afternoons a week (Monday, Wednesday, and Friday) four hours each visit. We continue that same schedule two years later. Fortunately, we have kept the same sitter on Wednesday and Friday. We have had three different sitters on Monday. Each one has worked pretty well although I have a preference for the one who comes twice a week and have felt that way from the beginning.

Kate and I have both adjusted well to the sitters themselves as well as the schedule, but we have responded differently. At first, Kate seemed to do pretty well. She may have even enjoyed having the companionship. As she became increasingly dependent on me, she also became more insecure about my leaving her. She would act surprised (I’m sure she really was) when I told her I was leaving and would say something like “You’re leaving? Why don’t you stay with us.” That left me to explain why I needed to go. She always gave in, but she also looked disappointed. More recently, even though she is more dependent on me now, she has been very accepting of the sitter. She often expresses enthusiasm when they walk in. In the past 2-3 weeks, she has shown no sign of disappointment that I am leaving. Of course, that makes me happy. I just hope it continues.

I have adapted differently than Kate. From the outset, I hated to leave her. Over time, however, I have been more comfortable. That is especially true recently as Kate has responded more positively, but I still feel a little uneasy when I leave her. My own experience has made me think about my dad who never wanted to have someone stay with my mom. My brother and I tried to get him to accept help and succeeded in getting him to try it. He let her go after one or two visits.

Despite my feelings, I have continued because I felt it was the right thing to do. I believe it is important for me to keep up with some of my outside activities. My plan for Kate’s care has always included bringing in help as needed. I am actually surprised that I have not felt the need to increase the number of days we have a sitter. In many cases, caregivers don’t have paid help because of the expense. In our case, we have long-term care insurance that will pay up to eight hours a day seven days a week. The only reason I don’t take advantage of that is my desire to spend as much time with Kate as I can. I know that we are approaching a time when I may not be able to take her out with me as we have done before. I have a stronger desire to enjoy all the quality time we have left than to use the insurance just because we have it.

I think I am in a good position. My intent is to continue monitoring our needs and increase her in-home care as needed.

Update on In-Home Care

Sometime during the past year, I mentioned my having to get up with Kate during the night. At that time, I was speculating (as I often do) about the future and whether I would feel my greatest need for in-home care would be at night rather than during the day. Fortunately, she hasn’t gotten up at night since then. I wish I could say the same for myself. At the moment, I plan to continue the same schedule of in-home care that I currently have had since starting a year and nine months ago. That involves two different sitters. One comes on Mondays so that I can go to Rotary, the Y, an occasional meeting, and run errands. The other comes on Wednesdays and Fridays. Those are also days for the Y. In addition, I use them to meet friends, run errands, and occasionally take my laptop and/or iPad to Starbucks or Whole Foods to check email or work on my blog.

This schedule has worked out well for me. I still don’t feel the need to add any additional time, but that may be coming. I have just accepted membership on another United Way committee. That makes two. I have also been asked to participate on a panel at a conference sponsored by a chapter of the Alzheimer’s Association in Nashville the last of August. In that case, I will take Kate along with me. The conference sponsors are going to provide someone to help with Kate at lunch and during the panel session. I may explore other such opportunities locally. Unless engagements like that occur during a time I currently have a sitter, I will need to arrange for someone to be with Kate.

I feel good knowing that our long-term care insurance cover 8 hours a day. (I originally thought it was 12.) I am a long way from needing that amount of time, but as Kate declines I realize that could change any time. I feel a sense of security knowing that my commitment to move to a local continuing care retirement community in a year and a half opens other options for me. We are now considered members of the community and can eat there (at our own cost), use the exercise facilities, and attend events. It also includes access to their adult day care program, assisted living, skilled nursing, and memory care should we need them.

So at the moment, I feel I am well-covered with respect for Kate’s care. That’s a good feeling.

Another Good Experience with the Sitter

I don’t have a good explanation, but Kate has seemed to accept the sitter happily over the past three weeks or so. Yesterday’s experience was the best yet. It reminded me of another experience in that I didn’t leave immediately after Mary arrived. I was trying to take care of some last-minute tax business and continued working at least another thirty minutes. I was in the kitchen and could hear the two of them talking but had no idea what they were talking about.

When I was ready to leave, I walked into the family room where Kate and Mary were seated side by side on the love seat. They were looking at one of Kate’s photo books. I assumed it was one of the family books. When I got closer, I could see that it was a photo book I had made two years ago with photos taken during several of our summer visits to Chautauqua. I stopped a minute and just listened. Kate was telling her about the beauty of the places in the photos. She came to one and said, “I don’t know what this is?” I told her.

Knowing that recently Kate has been unable to remember Chautauqua, I couldn’t help but wonder what she had been telling Mary. It was clear that she was saying something about the various pictures. I was just happy to leave her while she was having such a good time.

When I got home, they were seated in exactly the same place. This time they were looking at photos from an old album that I believe her father had put together. Kate said, “You should have gotten here earlier. We needed you.” I said, “What for?” She said, “To help us identify who all these people are.” I identified her mother and father. Before Mary left, she told me that they had taken a break during the afternoon. Kate took a nap. Then they went back to their photos. I felt good knowing that Kate had been perfectly comfortable while I was away. The way I saw them interacting was just like two friends talking. I consider that a real victory.

After Mary left, I sat down with Kate. We spent the next fifteen minutes looking at photos before she said she was getting tired. It was getting close to dinner time, so I suggested we get ready for our Friday night pizza.

I should add that one thing Kate has lacked the past four years is a close friend. Prior to that she and her friend Ellen ate lunch every Monday while I was at Rotary. They also got together one or two other times during the week. Ellen’s stroke changed everything. The stroke occurred while she was visiting her daughter in Nashville. She was never able to return to home and has been in memory care for almost two years. Kate and I visit her regularly, but that is very different from the kind of relationship the two of them had for so many years. Thus, the development of a closer relationship with the sitters could go a long way in filling the vacuum that Ellen left behind. I don’t expect the relationship to be the same as it was with her, but I feel encouraged by the way things are going.

Another Good Day: Two Victories

It’s been a year and a half since I engaged the services of sitters for Kate. From the outset I was concerned about her accepting them. She surprised me by doing so immediately. She was never enthusiastic, however, just accepting. As she has become more dependent on me, she has seemed more reluctant for me to leave without her. Recently, she has enjoyed being with both sitters. That continued yesterday when Mary arrived.

When she came in, I was in the back of the house. I heard Kate greet her. A few minutes later, I walked in the family room. They were chatting. It looked just like Kate was talking with a neighbor who had dropped in to say hello. She did say, “Where are you going?” when I told her I was leaving, but she was perfectly at ease. There was no sign that she was bothered. As on several other occasions, I left feeling at ease myself.

When I walked in the house later, I heard Kate say, “Perfect timing.” It turned out that she and Mary had just returned from Panera. Kate told me they had had a good time.  I considered this another victory. It has been months since she has let the sitter take her to Panera in the afternoon. Prior to that it was a regular event. I hope this continues. Before Mary left, Kate said, “Have you ever seen her drive?” I told her I had only seen her drive in the driveway. Then she told me what a good driver Mary is. This is a consistent pattern for her. She regularly talks about well people do things. It’s one of the things I like about her.

Even after Mary was gone, she repeated they had a good time and how much she likes her. That was quite a victory. I couldn’t have had a better welcome home. I’ll feel much easier the next time I leave her. Even though I hadn’t spent much time with Kate earlier in the day, I was ready to say it was another good day. The rest of the day also went well.

Last night was pizza night. When we got home, she said, “What can I do now?” I suggested we go to the family room and that she could look at one of her family photo books, work jigsaw puzzles, or look at her “Memory Book,” the three-ring binder I had put together with information about our families and memories of our lives together. She started with the memory book while I watched the evening news. In a while, she picked up a history of her family’s church in Fort Worth. It was published in 2001 on the church’s 100th anniversary and had been a gift to her mother. It’s a book of over 200 pages with normal type (small for Kate).

As she went through it, she was thoroughly engaged although she had difficulty reading it. I was still impressed that she continued to work at it for about thirty minutes. She could not have done this before her cataract surgery. I should add that she also needed my help. I was seated on the sofa across from her. Every few minutes she would see a photo but couldn’t read the type indicating the person’s name. Sometimes she could read a heading but couldn’t read the text. She finally reached a section she wanted to read and asked me to read it for her. For another thirty minutes, I read to her. Her interest never waned, but I don’t believe it was because of the content per se. Some of the things I read were about people she didn’t know at all. There were also accounts of committees appointed to conduct a search for a new pastor or construct a new building, but it was her family’s church, the church in which she grew up. I was touched to see the pleasure she enjoyed looking through it.
That has to count as another good day.

A Big Success with the Sitter

A year and a half ago, I engaged sitters for Kate. On the whole, it has gone quite well. Kate accepted having them from the start; however, she has never been enthusiastic about them. More recently, as she has become more dependent on me, she has sometimes wanted to go with me when I leave or for me to go with her and the sitter if they are going to lunch. Each time I have managed to let her know that I needed to go to Rotary, the Y, or a meeting, and she didn’t protest.

Despite Kate’s acceptance, I’ve never felt fully comfortable leaving her. I’ve done it because I feel that it is important for me to have time away to do other things. It also sets the stage for increasing the sitters’ time in the future. Two experiences in the past five days have made me feel better about leaving her.

The first occurred last Friday. As I walked into the family room where Kate and the sitter were seated, I heard the sitter tell Kate that she would see her “next week.” Kate apparently misunderstood and thought she might not be coming back. Kate looked frightened and said, “You’re not coming back?” Mary repeated that she would be back next week. Kate said, “Good, because I need you.” I was happy to see that she not only felt comfortable with the sitter, but there seemed to be an emotional bond.

On Monday, we had a different sitter, Cindy. When I got home, they were engaged in a conversation, and Kate was playing a very active role in it. Cindy told me that Kate had not taken a nap and that they had been talking all afternoon. That was another victory. We had two good experiences with two different sitters.

I found both of these experiences encouraging, but the biggest victory came yesterday with Mary, our Wednesday/Friday sitter. Normally, I would leave for the Y as soon as s arrives. We had just returned home from lunch, and I wasn’t going to the Y but a dental appointment at 2:00. I didn’t need to rush, so I talked with Kate and Mary about ten minutes. I think that worked better than my leaving as quickly as I usually do. When I told Kate goodbye, she didn’t show any sign of disappointment that I was leaving or that she couldn’t come with me. The big surprise came when I arrived home. I found the two of them were still seated in the same chairs they were in when I left. I asked if they had gone out. Mary said they stayed at home and never left the family room. They talked and listened to the music playing on my audio system when I left. She added that they both rested in their chairs a short time. After Mary left, Kate said, “She is really nice.” It wasn’t just the words. It was the emotion she expressed as she said them. She had a really good time with Mary, and I felt better about having sitters than at any time since we began a year and a half ago. That was a victory.

Another Dementia Test

Yesterday a nurse contracted with our long-term care insurance company came by the house for a periodic check up on Kate’s condition. I spoke with her in advance to let her know that Kate no longer remembers that she has Alzheimer’s and that I don’t want to remind her. She was mindful of that, but the test itself was a struggle.

There seems to be no way around some of the things that are required of the people who check on the insurance company’s clients. When the nurse came in, the first thing she did was show us her photo ID. She explained that she was there in connection with the in-home care Kate is receiving and mentioned the name of the company that provides our sitter. I don’t believe Kate has understood that she has in-home care from an agency. I have only told her that the sitter is someone I have asked to stay with her while I am gone. Kate accepts that because she doesn’t want to be left alone; however, I don’t believe she thinks of herself as having a caregiver. I know she recognizes that I do just about everything for her, but I don’t think she sees me as a caregiver or that she needs one.

At this stage, I suppose none of this matters since Kate doesn’t remember that the nurse came by at all, much less what she said or asked. Nonetheless, I felt uncomfortable for Kate throughout the thirty-five-minute interview. By far the worst part was observing her miserable performance on the “test.” The nurse handled it well by explaining that there are no right or wrong answers. She was very encouraging when Kate struggled for her answers. Several times she said, “This is ridiculous.” I should add that she also said “Thank you. I appreciate your understanding.” when Kate tried very hard to remember something and couldn’t.

The test seemed rather long to me. That may well have been because Kate was only able to answer one question, and that one surprised me. The nurse asked, “Where are we right now?” Kate hesitated a moment and said, “Home.” I was ready for her to say, “Texas.” Here is a sample of questions she couldn’t answer: Her date of birth, her age, the state where she lives, her address, the President, any president, as well as the month, date, year and season we are in. The nurse also pointed to her watch and asked Kate to tell her what it was. Kate said she couldn’t see it. The nurse got up, walked over to Kate, and let her hold the watch. Kate couldn’t think of “watch.” That was one of two of Kate’s answers that surprised me. The other was correctly identifying where we were. Near the end of her questions, the nurse asked her if she thought she had any problems with her memory. She didn’t hesitate and said, “No.”

By this time, Kate has had quite a few such tests. I suspect I am not the only spouse or child to feel uncomfortable watching his loved one go through this process. Although I am concerned about the next one, I suspect that she is now reaching a point when it may not frustrate her. I know this has to be done, but it runs counter to the way I try to relate to her.

Sleep and the Monday Sitter

It was almost a year ago that Kate began sleeping later. That has continued to the present although she sometimes surprises me by getting up much earlier. During the past month, she seems to have had less trouble getting up even when I wake her. I am doing that more now, especially on Mondays. That’s the day the sitter comes an hour earlier (noon) than on Wednesday and Friday. We have had a new sitter, Cindy, for four weeks. On two occasions, Kate hasn’t gotten up the entire four hours she was here. I have a sense that Kate didn’t feel as comfortable getting up with her as she did with the previous sitter.

That is leading me to make an adjustment in the way I prepare Kate. Yesterday, I made sure that Kate was up and dressed before Cindy arrived. In fact, we were ready early enough to make it to Panera for Kate’s muffin. We returned home at the same time Cindy arrived. That made for a smooth transition.

I made another change I feel good about. In the past, I would have gotten lunch for Kate. That meant that Kate and the sitter had a full four hours to fill. A year ago that would have been no problem. Kate and the sitter regularly went to Panera for part of the time and spent the remaining time at home. Since that time, Kate has not wanted to go to Panera with the sitter. I suspect she felt less comfortable going there with a sitter as she became more dependent on me. I have kept them occupied by providing DVDs of musicals as well as musical videos on YouTube. On some occasions they have spent the whole four hours watching them.

I’ve been looking for another diversion and think I have found something for them on Monday. Although I enjoy taking Kate to lunch, it is just too rushed for me that day. Even before Kate started sleeping later, I were too pressed for time getting her to lunch and back home by noon to meet the sitter. Sometimes I’ve asked the sitter to meet us at Panera or wherever we were having lunch that day. Yesterday I decided to have Cindy take Kate to lunch at Applebee’s. I thought that would offer them an informal situation where they could visit over lunch. That went well. Cindy said they were there quite a while. I plan to do that again.

I wasn’t surprised to find that Kate was asleep when I returned at 4:00. She has often napped in the afternoon, but that has become more common lately. It is not unusual at all for her to get up in time for lunch and then take a nap immediately after lunch. At first, I was concerned that she might have trouble going to sleep at night, but she didn’t. Recently, that has changed. She used to go to bed around 8:30. Now it is closer to 9:30 and sometimes 10:00. In addition, she doesn’t fall asleep as quickly as she used to. She is almost never asleep when I come to bed.

I haven’t worked out a plan to address the issue. Since it has been easier to get her up in recent weeks, I may try getting her up a little earlier. I would like that. That would enable us to have a more predictable lunch time. Like so many other things, I’ll have to see how it goes and be flexible.