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The Sitter’s First Full Visit

I have often said that we worry about lots of things that never happen while we are surprised by things that we never anticipated. That certainly applies to the first full visit of our sitter for Kate.

Kate went outside about ten minutes before the sitter was to arrive at 1:00. I told her that I was going to the Y and asked if she remembered Brittany who came to our house the other day. She didn’t remember at all. I would have been surprised if she had. Then I told her that Brittany would be here while I was gone. Kate asked why she was coming. I told her what I had said before her visit on Wednesday. I told her that I was just feeling bad about leaving her alone when I go out. Then without any coaxing she said okay. I was thrilled. It was so much easier than I had expected. I had worried about something that didn’t happen. At the same time, I interpreted this as another indication of the progression of her illness. I told her I wanted to give her a hug before I left. I did so and told her I loved her. I held her tight and tears welled up in my eyes. We kissed. Then she went outside to her yard.

The sitter arrived a little late (1:06 instead of 1:00). I started to tell her that I was a stickler for time, but I decided not to make anything of it. I could just wait and see if it is a habit. Kate was working in a flower bed in the back yard. I thought that worked out well so that I could show Brittany around the house and tell her a little more about my expectations. I reminded her that Kate has no short-term memory and would not remember her. I also told her that I thought the most important thing she could do was to make friends with Kate, “just get acquainted with her and also let her know more about yourself.” I told her that Kate could stay outside as long as she likes but to keep an eye on her.

It was 1:30 before I left for the Y. I left there at 3:45 and went to a Panera store in a different location from the one we usually visit. I did so to buy a gift card for the sitter to use if they went there sometime while I was gone. It was almost 4:30 when I got home. Brittany was sitting in the family room watching TV. She told me Kate was still outside. I looked and noticed that she was in almost the same place as when I left. That is the longest Kate has spent outside since the spring when the weather was cooler. Today is one of the most pleasant days we have had.

I went to the bedroom to take my gym clothes out of the bag and put them in the clothes hamper. Then I went to the closet and opened my top drawer to return the Y membership card that I had taken out of the drawer right before I left for the Y. I noticed that the top drawer was in more disarray than usual. I can’t claim that it is usually or ever neat, but I know where things are and can see them pretty easily. At first, I wondered if I could have messed up the arrangement of things in the draw that much when I took the Y card out. Then I opened the top draw to the right of the one where I keep my keys, wallet, and some cards. When I opened that drawer, I immediately saw that the contents were very differently arranged than usual. I use a microfiber cloth to clean my glasses. I keep it on top of the other things. It is a good size cloth and covers almost the full width of the drawer. I could only see a trace of it under several envelopes and cards. It was obvious that someone had gone through the contents. The last time I opened the drawer was yesterday morning. I went into the family room where Brittany was watching TV. I asked if she was sure that Kate had not come inside while I was gone. She said she was. Then I asked if she could have gone into two of my dresser drawers. She said she hadn’t. I didn’t push it. I didn’t expect her to say she had. It was still about 15 minutes before time for her to leave. I told her she could go. Then I went back to the bedroom to see if there were any other unusual things. The only thing I noticed was that a top drawer to Kate’s dresser was pulled out slightly. I think Kate has completely forgotten about having anything in it, and I have never opened that drawer at all.

I can’t be sure that Brittany was the one who got into the dresser drawers. It is possible that Kate had done it. I just think that is very unlikely. I have known her to go into one of the other drawers that has socks in it, but not the top two drawers. Despite not being sure that Brittany did it, I just didn’t feel comfortable having her back again. I called the agency immediately. They apologized and jumped right on a replacement for Monday. They seemed very pleased with this person who has worked with them a while. They said that everyone has liked her, and the person for whom she had been carring had died and would probably be available on a permanent basis. I shall look forward to meeting her on Monday.

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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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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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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.

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Progress on In-home Care

This morning at Panera, Kate and I met with the social worker from the agency that is going to provide in-home care. I had arranged for the social worker to arrive after Kate so that we could make it appear to be a chance encounter. This worked beautifully. I saw her when I got up to get a cup of coffee and brought her back to the table where Kate was seated. I had left the seat across from Kate open for the social worker. I introduced Kate to her and told her that she and Marilyn had something in common. Then Marilyn explained that she had been the social worker at the primary care practice where Kate goes and where Kate’s mother and my parents had gone. That led into a very natural conversation. Marsha was with us about 30 minutes before leaving.

The agency that will provide the care requires an interview the person who will receive care before they assign a caregiver. At first, I had wondered how to explain this to Kate without saying that I was getting ready to bring in someone to care for her. Then I thought it would be natural for us to have this kind of meeting at Panera. It was like so many others we have there. It turned out to be a good idea.

The next step, of course, is to explain the presence of a caregiver. I have been struggling with this, but Kate has been increasingly accepting of whatever I do. I think that I may be able to tell her truthfully that I don’t like to leave her alone and thought that she might like to have someone with her who could be a companion and also help her with anything she needs. I may mention some help organizing clothes. It would be wonderful if she and Kate could work together to sort through the things that she is not likely to wear any more and organize her closet with just those things that she will wear. We are scheduled to have the first visit on September 6 after Labor Day. That gives me time to talk with the social worker again and to think through the best way to make this transition.

Although I am concentrating on making this go well for Kate, I am also mindful of the transition for me. This is a big step symbolically. In addition, I have enjoyed and become adjusted to being her sole caregiver. That will be hard to sacrifice, especially since I am not doing this to relieve the stress of caregiving. It is more an effort to make me feel comfortable when I need to be away from the house. For example, this will enable me to continue going to the Y, to Rotary, the grocery etc. I am confident that she and I will adjust. It is just a big step.

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How am I Feeling?

Observing Kate’s decline over the past few months and finally taking steps to get in-home care for her has left me feeling a bit sad. It also makes me think about what other caregivers have said about “grieving” for their loved one long before their death. I can see (feel) exactly what they mean. Recognizing the need for in-home care is not really the beginning. For much of the time since her diagnosis, I have come to understand that our lives together have been permanently changed. As all my entries in this journal convey, that hasn’t meant that we have not enjoyed life. I still maintain that these years have been the best of our marriage. That is because we have worked hard to make the most of the changes. We have lived to make each moment special. The reality is that our lives have changed continuously since the first signs of her illness 11 years ago.

Reaching the point of in-home care is a significant one symbolically. It signals a time when the severity of her illness requires more help. Although we will begin with minimal help, that is our first step toward full-time care. In the meantime, I plan to continue doing as much as we can socially. We will continue to go to Panera each morning. We will continue lunch with local friends. We will also visit our friends in Nashville. This Sunday we are going to Asheville for a show at one of their local theaters. Once again, we will stay at the Haywood Park Hotel, our home in Asheville since they opened. We have season tickets to the Bijou in Knoxville. We will try the Live in HD at The Met productions. I am a little guarded about those. We walked out at the first intermission of the last one.

That said, I can’t forget that we are approaching that chapter of Kate’s illness that I have not wanted to face. I am at a weak point emotionally, but I know that we will be able to cope with what lies ahead even if it is through lenses covered with tears.

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I took a big step: In-home care

This afternoon I met with a social worker with an in-home health care agency. She is someone that I have known at least 15 years, perhaps 17. She used to work for the physician practice with which my mom and dad’s doctor was affiliated. Later she worked at the VA where I also knew her since Dad got his prescriptions there. In addition, I also know the marketing representative for the agency. I had worked with her in providing rehab services for my father’s companion after her hospitalization in 2007 or 2008. Another reason I feel comfortable with this agency is that Kate had interviewed the owner during the time that another agency was providing care for Kate’s mother. Kate had been impressed with him. In addition, one of the social workers at Kate’s physician’s practice (the same one my parents used) had given me the name of this agency and one other as places she felt good about.

I was impressed with the listening skills of the social worker. She didn’t interrupt me once as I was giving her information. That is rare. After giving her all the background information I wanted her to have, she gave me information about the agency and their services. Then she completed a form with information about Kate and had me sign a contract.

We plan to start the Wednesday after Labor Day. We will begin with a three day a week schedule. They have a 4-hour minimum. On Monday, someone will be there at noon so that I can get to Rotary. After Rotary, I will go to the Y and then back home. On Wednesday and Friday, a caregiver will come at 1:00. I will go to the Y at that time run errands or meet someone for coffee or whatever so that I can be home by 5:00.

I set up an appointment for the social worker to meet Kate on August 23. We are going to meet at Panera. The plan is for it to appear as a chance meeting. We will be there a little early. When the social worker arrives, she will stop by our table and say hello. I will invite her to sit down with us.

I haven’t figured out exactly how to explain the caregiver to Kate. My plan is not to define her as a caregiver. This is an important first step. I am optimistic that it will work out fine.