A Different Kind of Monday

So much of my attention is focused on Kate and the changes she experiences that I often overlook the fact that change us occurring for everyone on a daily basis. I think of that now because Kate hasn’t even stirred yet, and I know this Monday will be different for us. Last night, I received a phone call from the agency that provides the sitters for Kate. Marilyn, who was supposed to be here from noon to 4:00 is sick and will not be able to come. They were quite willing to send a new person, but I declined. I would rather change my plans for the day than bring in a sitter that Kate has never met. Actually, I am rather glad to have another day without a sitter.

Kate’s morning routine continues to be erratic. After thinking that she was settling into getting up late, she got up early several days in a row. The past few days she has gone back to sleeping late. Yesterday was another day when I had to get Kate up earlier than she wanted. Fortunately, she was very cooperative, but I felt bad about it. She has been very tired in the morning. I thought it might be good to let her sleep this morning but knew that the sitter comes at noon on Mondays, and I didn’t want her to wake up after I had left for Rotary. It’s not that I don’t think she could handle it. I just know that she often needs my help when she gets up. Of course, at some point, I will probably have a sitter to help in the morning. I don’t think either of us is ready to do that right now.

I often mention that Kate either sleeps late or surprises me by getting up early. She has experienced one other change in the past week or two. She doesn’t seem to go to sleep as quickly as she used to. There are some nights when she hasn’t gone to sleep as long as an hour or two after going to bed. I don’t ever recall that before. Of course, that could easily play a role in her needing to sleep in the morning. At dinner, she frequently tells me that she is going to “crash” early; however, she seems to get her second wind after we are home. When she was on Trazodone, she went to sleep rather quickly, but I don’t want to go back to that just yet. On the whole, I think she has been more alert since we discontinued it six or seven months ago. Her only groggy moments occur when she wakes up in the morning. Trazadone could exacerbate her confusion.

At any rate, I don’t plan to go to Rotary today. I also had a United Way meeting scheduled at 2:00. I will skip that as well. Kate and I usually have nice days together. I’ll take advantage of this change in the sitter’s schedule to enjoy the day with her.

I should add that yesterday was another good day. Since Kate got up late, we went directly to lunch. That gave us a brief time at home before going to see the musical Buddy at one of our local theaters. We had a good time. From there we went to dinner and then back home to relax the rest of the evening.

A Good Experience with the Sitter

As you may recall, I have expressed some concern about Kate’s recent response to our sitters. My guess is that as her dependence on me has increased, she has felt less at ease when I leave her with a sitter. As with other behaviors this varies, and I am always glad to report the good experiences as well as those that fall short. Yesterday was a good one.

We arrived at Panera later than our normal time. I am not sure why I say “normal.” We haven’t had a normal time in several months now. We were early enough for Kate to have a muffin and then lunch before I had to leave for Rotary. Kate was in an especially cheerful mood, so I was hopeful that she might be more receptive to the sitter. I didn’t say anything about my leaving for Rotary until twenty minutes before Marilyn arrived. Kate’s only concern was Marilyn’s name. Several times before and once after she arrived, Kate asked me to repeat her name. She showed no concern other than that. I may have facilitated things when I set up the TV to play a series of videos of the Mormon Tabernacle Choir. Both Kate and Marilyn were interested in watching.

When I returned home, Kate was resting on the sofa in the family room. Marilyn was in a chair nearby. Everything appeared to go well. They had watched the choir for two hours before taking a break. I had left earlier with a good feeling and glad that nothing happened while I was gone to diminish it.

Good News for Me

If you have been following my recent posts concerning Kate’s acceptance of a sitter, you know of my concerns. In a nutshell, as she becomes more dependent on me, it appears that she has also felt less secure when I leave her. I am glad to report that her response today was very different. I should add that she got up in a cheerful mood this morning. I hoped that was a good sign, and it was.

Usually, I don’t say anything about a sitter’s coming until shortly before she arrives. Today, I decided to give Kate a little preparation. While we were at lunch, I told her this was one of my days to go to the Y and that Mary would be with her while I was gone. I mentioned that they could stay at the house or go to Panera. She seemed to like the idea of Panera which is typical. Then she asked what she should do for money. It is interesting how often she asks this since she has never had to pay at all. I told her that I had a card that Mary could use. She accepted the news without any further questions.

When the Mary arrived, I told them they could watch a DVD of one of our musicals and mentioned Fiddler on the Roof and Les Miserables or one of the others. They liked the idea and were both very agreeable regarding which one. Mary had never seen Fiddler, so I chose it. I explained that it is almost 3 hours in length and that they might want to take a break at some point. I also pointed out to Kate that she could go to Panera any time she wanted. As I left, the movie was playing, and Kate seemed happy. I left with a good feeling. Now, I’m eager to see how they got along during my absence. Since they got off to a good start, I suspect it is going well.

Reaction to My Leaving Her with the Sitter

Sometimes there are dramatic moments that one can recall as a point when life changed. The moment Kate’s doctor delivered the news of her diagnosis was one of those. It was mid-day on January 21, 2011, exactly one week after Kate’s 70th birthday. That was a clear marker in our lives. Most other changes are less defined. They just creep up on you. That has been the pattern for Kate and me the past 7 years and 8 months.

Although our changes have been very gradual, I frequently wonder if we are entering a new phase when I notice any difference in Kate’s normal pattern. The changes in her sleeping late in the spring made me think that a signal of an important change. Of course, I couldn’t be sure at the time. Looking back, it appears I was right. Since then, Kate’s changes in memory and confusion have increased more significantly than at any other time since her diagnosis.

One of those changes has been her behavior in connection with the sitters. For months, she happily greeted them. That made me feel good as I left her. Over the past few months, I’ve noticed less enthusiasm when the sitter arrives. On several occasions, Kate has asked if she could go with me. She seemed disappointed when she couldn’t. Along with that reaction, there have been some occasions when she and the sitter didn’t go to Panera. She is also spending more time resting while the sitter is here.

During this same period of time, she was growing more dependent on me. I have mentioned several times, once in the last day or two, that Kate has told me she likes being with me, that she feels safe with me. She hasn’t said this around the time the sitter has been here, but I have always wondered if there might be a connection. An experience yesterday strengthened that suspicion.

We arrived at Panera for lunch a little later than I had wanted and called the sitter to meet us there rather than at home. A few minutes before Mary arrived, I reminded Kate that I would be going in a few minutes and that Mary would take her home. She gave me a big frown. I said, “Do you feel like I am deserting you?” She said sternly, “Yes, and I don’t like it.” All of a sudden I felt like a parent leaving her young child on the first day of school.

When I got home, Kate was resting on the sofa in the family room with the sitter who was watching TV. I walked the sitter to the car and asked if they had stayed long at Panera. She told me they stayed “a little while.” She said Kate had wanted to go back home where she rested for a while. Then she got up several times and returned to the family room. She worked on the iPad a little but also rested a good bit.

In our conversation, I suggested that if this happens again that she might take her back to Panera. She seemed a little surprised. I told her it is not uncommon for us to go back more than once in a day or to Barnes & Noble. I also told her that Kate gets bored staying at home for long stretches and that we are rarely home for more than 2-3 hours in a day. I will convey this to our other sitter the next time she is here. I am hoping to work with the sitters to address the issue. I feel that is a better direction than reducing the sitters’ time.

First Day With the New Sitter

Yesterday was Kate’s first day with Marilyn. She’s the interim sitter while Anita is out. Having interviewed her last week and spending time with her at lunch, I felt comfortable leaving Kate with her. It turned out that we got to Panera a little later than I wanted, so I called Marilyn and asked her to meet us there. Just before she arrived, I reminded Kate that it was my day for Rotary and that someone new be with her while I was gone. A few minutes later, Marilyn arrived. I re-introduced Kate to her. When I did, Kate said, “I really don’t need anyone, but it’s nice to have company.” I took that as a positive sign even though she was making her point about not needing anyone. It is likely she was doing that more for the sitter than for me.

When I got home, they were in our family room. Kate was resting on the sofa. Over the past several months, she has frequently been resting when I arrived. I have also discovered from the sitters that they have not been spending as much time at Panera as they had before. Had this occurred earlier, I might have thought it was a result of some embarrassment to be out with a sitter. She has never shown any concern about that.

I am speculating that it may relate to her increasing dependence on me. It’s not just that she lets me do more things for her. It’s that she periodically tells me that she “feels safe” with me. The first time she said this I didn’t attach much significance to the word “safe.” Since it comes up occasionally, I’m thinking she really feels more secure when I am with her outside the house. That is when she would be most puzzled by her surroundings. At Panera yesterday, I walked her to the restroom because she was unsure how to get there. If she is unsure there, I can only imagine what it must be like other places. That insecurity, of course, may extent to her feelings when she is with the sitter at home. I know that the sitters have told me that she asks when I will be home.

Last night, she got in bed shortly after 7:30. I was a little surprised because the sitter said she had rested most of the time I was gone. I took a phone call from our son and went into the family room so that I wouldn’t disturb her. After his call, I went back to the bedroom to get ready for my shower. She was still awake and asked if I were coming to bed. I told her it was a little early for me to go to bed and that I would be close by in my chair right beside the bed. After my shower, she asked again about my coming to bed. I got into bed with her. She was very calm, but she was relieved that I had come to bed and said, “I’m glad you’re here. I feel safe when I am with you.” That was just the beginning. She talked for a good while. It was like many other conversations in which she talked about how fortunate we are. She never gets very specific because her memory won’t allow that, but she clearly retains her feelings about her family, our marriage, and our children.

Looking back, she had been in a good, but calm, mood earlier before Marilyn arrived. I wonder if she might have felt insecure because I wasn’t there. That might have led her to think about her memory loss and inability to do so many things. I know that she was quieter at dinner, but she didn’t really look depressed. I’m not going to speculate too much. This is something I may never understand. I will, however, be looking for any patterns that may be developing.

Update on In-Home Care

It’s hard to believe, but it was a year ago on September 8 that I engaged a sitter for the first time. I chose to work through an agency that was one of several recommended by Kate’s doctor’s office. I had thought about bringing in sitters for at least six months before making the commitment. I just wasn’t ready until I felt I could no longer leave her alone. That was a specific problem for my exercise at the Y three days a week and my weekly Rotary meeting as well as a monthly meeting at United Way.

There were a few rough edges in settling into the two people we have had for all but two weeks since then. The good news is there was no problem introducing them to Kate. I had dreaded telling her because I thought she might resist. It turned out that she only asked why I was having someone stay with her. When I told her I was feeling less comfortable leaving her alone and thought it would be better for her to have some company, she said, “Okay.” That was it. She’s always been very cordial with both of them. There have been several times when she wanted to go with me or frowned when I told her the sitter was coming. Most of those times have been recent. I believe that relates to her growing dependence on me.

Knowing that Kate doesn’t like to remain at home for very long at one time, I  purchased a Panera gift card and told the sitters they can use it for themselves as well as for Kate. Until recently, they have always spent time at Panera. Now, it seems like they go most of the time but spend less time there on each visit.

We are introducing a new sitter next week. Anita, who comes on Monday, is having a surgical procedure that will prevent her being here. The agency did not tell me the problem but said they were not sure if she would be out more than one day. This morning at 11:00, Kate and I will interview a new sitter. I thought we would meet here at the house for about 45 minutes and then go to lunch. I would like to get to know her as well as possible in the time we have. Following our time together, I will call the agency and let them know if I would like to have her come on Monday or interview someone else.

From the start, the biggest problem was my accepting someone else to care for Kate. I now have a better appreciation of why my dad was uneasy about in-home care. Even now, I am not fully adjusted to having a sitter; however, I really believe this is a wise thing to do. Having sitters has enabled me to continue going to the Y, to attend Rotary and other meetings, as well as running errands and meeting my friend, Mark Harrington for coffee on Friday afternoon.

I should also say that I have been pleased with the sitters themselves. They are not CNAs (Certified Nursing Assistants), but the only need we have had so far is simply to be here with Kate and to take her to Panera when she wants to go. In other words, they simply spend time with her.

Overall, having sitters has worked for us. It has enabled me to continue my life apart from caregiving. Although I have never thought of it as a way to minimize stress, I suspect it has served that purpose as well. Having additional help has also been a good transition for Kate and me as we look toward the future when she will require more care. I haven’t been ready to increase the time, but I suspect that may happen soon. I’m not sure what part of the day I will need it most. If Kate were to start getting up at night, I might want someone to be here during that time. On the other hand, Kate will eventually need help with her shower. That would mean having someone in the morning unless I decided to switch her shower to the evening. As with other things, I’ll take this one day at a time and see where it takes us.

I love it when things go well with the sitter.

Recently, Kate has indicated that she likes being with me and that she feels “safe” with me. I suspect that she means something more than safe. I think she is expressing her dependence on me. She feels secure with me because she can ask me anything. I don’t  believe she feels the same way with our sitters. Several times lately, she has given me a scowl as I left her with them. She has been very careful not to convey this to the sitters themselves, at least when I am there.

Yesterday, when I got back from Rotary and a meeting at the Y, I found Kate and Anita sitting on the sofa in the family room going through one of her family photo books. This one focused on her mother’s family. While I was bringing in some things from the store and looking at our mail, the two of them continued for another ten minutes. They both seemed to be happy. That really made me feel good.

A little later at Barnes & Noble, Kate was working on her iPad when she needed help with several of her puzzles. This was far from the first time, but the specific problems suggest how difficult they are getting. She gave up on two of them and let me finish them for her. On another, she had only three pieces to complete the puzzle and was stumped. This is a 16-piece puzzle, so the pieces are large. One of the pieces was a corner. I showed her the piece and explained that it had two flat sides and would have to go in one of the corners. Then I showed her the three corners that were already filled and pointed to the empty space at the bottom right corner. I told her the piece would go in that spot. She didn’t understand. I put it in for her.

Next, I showed her the empty adjoining spaces and the two pieces that would go there. She couldn’t tell which one went where. This must be getting frustrating for her. I do hope that she doesn’t have to give up her puzzles.

It wasn’t long before she asked my name. I told her. She started to repeat it. Then she said, “Tell me again.” I told her. Within minutes, she asked again. I told her. She asked again. I told her again. Then she said, “And I am?”

We went straight from Barnes & Noble to Chalupas for dinner. Then we came back home. She went to brush her teeth. When she didn’t come into the family room, I looked for her. I found her in the hallway. I said, “There you are. I was looking for you.” She said, “Where do you want me?” I told her our bedroom and that she might want to get ready for bed. She asked me to get her something to wear. When I got back to her room, I found that she had been in bed in the guest room next to our bedroom. It was obvious that she had gotten confused about where she was to go.

At dinner, she told me she was tired and not likely to last long. She was right. She called it a night just before 9:00. Before she got to sleep, I walked into the bedroom humming something. She laughed and said, “You’re cute.” Then she said, “What’s your name?” And then, “What’s my name?” A few minutes later she said, “Where are we?”

It was a nice day, but I really wish she didn’t have to go through this.

A Minor Bump in the Road

It has been almost ten months since I engaged the services of an agency to provide a sitter for Kate three afternoons a week. I agonized over this for several months prior to taking action. I was concerned about how Kate would respond. It turned out I didn’t need to worry. She responded quite well. During the first couple of weeks we tried several sitters that didn’t work out, but we quickly settled into the two who are with us now. Anita comes on Mondays. Mary comes on Wednesdays and Fridays.

Although things have gone well, I have never completely adjusted to leaving her with someone else. On several occasions, one of the sitters has been unable to be here. In these cases, the agency was prepared to send a new person. Each time I declined. I didn’t want a new person to come in without our meeting her ahead of time. I know we are going to need more sitters as time goes on, but to me it is important to have them come out to the house for an initial interview before I leave them with Kate. That leads me to what happened yesterday.

Last week, I received a reminder of a meeting of an advisory board on which I agreed to serve several months ago. I called the agency to see if they could arrange for either of our current sitters since my meeting is in the morning and this is not one of our regular days. The person with whom I spoke said that they were both assigned to other clients at that time, but she would see if she could do some switching. I waited until Monday and called back to see if she had been able to make a change. She said she was still working on it.

When I hadn’t heard anything by yesterday, I called again. The person who answered the phone told me they were sending a new person. Of course, I told her I didn’t want a new person and that if that were impossible, I would just miss my meeting. I felt the person giving me the news was not as understanding as she should have been. I did not have a problem with their not being able to provide the regular sitters. I did object to their not calling me to let me know. I felt the person I spoke with yesterday was being too defensive and didn’t show  proper concern for Kate’s or my feelings about the situation. That was especially true since I would have to leave for my meeting before Kate would be up. I didn’t want her to wake up and find a stranger to greet her.

This is not a big issue, but it is the second time in the past few weeks that they have surprised me. The first one was a phone call asking me if I still wanted a sitter on Monday. I told them I did but was curious as to why they should ask. She said, “We noticed that you haven’t had anyone that day in a while.” I told her that one of those days was because the sitter was sick. The other was Memorial Day. They had specifically called to see if I would need them on that day. I told her, as I have for other holidays, that would not be necessary. I felt that should not have been construed as a desire or intention to reduce our in-home care. In fact, when we began the service I had conveyed my desire to keep Kate at home. That would eventually involve 24/7 care. It just seemed like they didn’t understand our situation.

As with so many things, I believe the situation could have been handled better on both ends of the line. I should have been more specific about my desires for sitters. I depended on that’s being conveyed to the staff by the representative with whom I made the original arrangements. I think I need to go into the office and meet with each of the staff personally. Communication is always so difficult, especially when you are dealing with multiple people. There are at least 4 different people I talk with at the agency. I believe each of them has individual responsibilities and skills that are different from the others.

As I say, today’s issue is not a major one. I just want the agency to be more of a partner in Kate’s care. They need a better understanding of situation and our long-term plans. I’m going to see if I can facilitate that.

Update on Sitter

Last Monday, Kate didn’t seem eager for her sitter. When I got home, Anita told me that Kate had been very quiet and not herself. Since I knew she was fine during the morning, I was concerned that we might have a problem with the relationship between Kate and Anita.

Kate got up late this morning. I had to wake her in order to get her lunch before leaving for my Rotary meeting. As I have done at least once before, I gave her the option of staying in bed and having Anita take her to lunch or going with me. She wanted to go with me and got up quickly. She met me I the kitchen when she was ready and asked how I was doing this morning. I said, “Just fine now that you are here. I love you.” Using her hand signals, she conveyed that she felt the same way about me. As I backed out of the garage, she said, “Tell me your name.”

We were running late, so I asked Anita to meet us at Panera. When I saw her walk in the front door, I told Kate that Anita had arrived and that I would be leaving for Rotary. She gave me a concerned look and said something that I interpreted to mean that she didn’t see a need to have someone stay with her. Then Anita walked up to the table, and Kate greeted her warmly.

When I returned home, everything seemed fine. They were both in the family room. Anita had the TV on. Kate was on her iPad. I walked Anita to the car and asked how things had gone. She said Kate was fine today. When I walked back inside, I asked Kate the same question. She also thought things were fine.
I did point out a photo album that Kate’s brother Ken had made for her. Anita said she had not seen it. I suggested that next Monday she have Kate show it to her. I felt better today than I did last week but will continue to be sensitive to any potential issues that arise.

As usual, Kate was ready to leave the house after I came home. Before leaving, she asked, “Where are we?” I told her we were at our home in Knoxville. She went to the bathroom. She asked the same question again. She asked again before we got in the car. She asked another three or four times before we got to Panera where I got her a bagel.

She was very tired at dinner and immediately got in the bed and under the covers when we got home. I let her rest for almost an hour. Then I suggested that she might get up so that she would be able to get to bed at her usual time tonight. She got up quickly and is now working on her iPad.

Yesterday’s Experience with the Sitter

I’ve noted before that Kate has received the sitters quite well. There have only been a couple of times when she seemed hesitant for me to leave. One of those occurred yesterday. She was getting along fine yesterday morning. When the Anita arrived, she didn’t greet her as warmly as usual, but nothing seemed strange. When I said I was getting ready to leave, Kate said, “I want to go with you.” I told her I was going to Rotary and the Y and that she and Anita could go to Panera or stay at home and do whatever they would like. She told Anita she would like to go to Panera.

When I got home, Anita said Kate was resting. She said that Kate didn’t talk much and that she had not tried to push her. I told her that was fine. She doesn’t talk a lot with me. Then Anita told me that Kate didn’t seem herself and suggested that maybe she wasn’t feeling well.

After she left, I went back to the bedroom where Kate was resting. She got right up and was ready to go out. She was perfectly fine, but I can’t help thinking that she was just reacting to not being with me.

Whatever was going on, I feel the need to see what I can do to avoid this again. There are a few things I can think of suggesting to Anita that might help. For example, we have several photo albums in the family room. She could ask Kate to show them to her. I suspect Kate would love that. She could ask Kate about her family or growing up in Texas. Her memory for details is poor, but she has strong, positive feelings about her family, especially her mother. I’ll get her to try that next time.