“Focus on the Person, Not the Dementia”

I continue to believe that the most profound information I’ve learned during Kate’s journey with Alzheimer’s came from The Dementia Handbook by Judy Cornish. She emphasizes that “all is not lost with dementia” and points out that while rational thought is lost, people with dementia continue to experience the world through their senses. That enables them to appreciate and enjoy many pleasures of life.

I have made that an essential piece of knowledge in my care for Kate, and it has provided years of joy while living with Alzheimer’s. The quote in the title above comes from one of Cornish’s posts on Twitter. It caught my attention as useful advice, and I’ve discovered numerous ways to apply it. The most typical example is when I return to the apartment after lunch or running errands.

In almost every case, I find Kate sitting quietly in her recliner with her eyes closed while the caregiver sits across from her looking at something on her phone. When I come through the door, I say, “Hello, I’m home!” She often responds with a greeting of her own and gives me a smile as I rest on my knees beside her. I tell her how glad I am to see her. She generally beams. Her whole mood changes in those few moments. It just took focusing on her and conveying how important she is to me.

Here are other examples of how it worked with Kate over the past few days.

Kate’s mornings have always been the most troublesome part of the day. Not all of them are that way, but she usually gets a slow start. That means she doesn’t talk much, and, frequently, she doesn’t want me to talk either. Sunday morning was one of those. She appeared to be bothered by something.

I went through my normal routine. I tell her how glad I am to see her and how special she is to me. On good days, that’s a real ice breaker. On other days, like Sunday, it falls flat.

I didn’t push her. I know from experience that doesn’t work. I got her morning meds and gave her something to drink. That went well. Then I played her Love Changes Everything album and got in bed beside her. I didn’t say anything for a good while and then commented on how much I liked the music. Then I told her I also liked being with her. She smiled, the first affirmation I had received that morning. She was coming around.

That led to a very nice conversation before she drifted off to sleep. She was half asleep when the caregiver arrived at noon. Sometimes that makes it easier to get her dressed and up for the day. This was not one of those times. She protested more than she has in several months.

I can’t be sure, but this may have been related to the fact that the caregiver is new. She began in January, and Kate hasn’t reached a comfort level with her. There are two problems as I see it. First, she doesn’t have as much experience as our other caregivers. Second, she is very quiet. She’s been here fewer than ten times, but she hasn’t said much to me or to Kate except when I have asked direct questions. In addition, she speaks softly and wears a mask, so Kate and I usually have to ask her to repeat herself before we know what she has said.

Given Kate’s mood, I felt that it was better that I stay home instead of going out for lunch. In fact, I remained at home the entire time the caregiver was here. That led to some good things because Kate wasn’t getting any attention from the caregiver and looked bored. I took a seat beside her while she was in her recliner and read The Velveteen Rabbit to her. She perked up right away. I followed that by reading about one of her grandfathers from one of her photobooks.

Things were going well, and I suggested we go for ice cream. While we were out, she had a delusion and hallucinations that disturbed her. Her mood shifted. We went back to the apartment. I spent some time with her while holding her hand and talking to her in a comforting way. I assured her that I would take care of several specific things that troubled her. She became less worried, but she wasn’t as cheerful as she often is at this time of day. I wondered how things would go at dinner. That is usually a good time for her, and it went well except that she wasn’t as talkative as usual.

The day picked up after the caregiver left, and Kate was in bed. She was very relaxed and happy. We talked a little about how comfortable we felt when it was just the two of us. I treasure times like that. She was tired and slept for an hour while I watched one of the NFL playoff games.

Our daughter called as she was waking, and we talked for almost forty-five minutes. Kate often has trouble with phone calls but did very well with this one. It was a beautiful end to a day of ups and downs.

It was a day that reinforced how the personal touch makes a difference in the way Kate feels. It doesn’t prevent delusions, hallucinations, or any of the other typical signs of Alzheimer’s, but it goes a long way toward relieving her anxiety or elevating her mood. That’s exactly what happened that day. Now, let’s look at another example that involves a caregiver.

One of my problems with our in-home care is that Kate doesn’t get this same kind of attention from any of her caregivers. I have accepted the fact that their training focuses heavily on things like bathing patients, dressing them, and using a lift to transfer them from bed to chair and back again along with a host of related things. Everything they do is important, and I don’t have the skill to do the things they do. On the other hand, they tend to focus on their basic skills and neglect treating Kate as a person.

That is why I feel that focusing on her as a person is my primary responsibility. As her husband, I’m in the best position to do this. I love her, and I do my best to express that love in every way that I can.

Having said that, we had an experience with a new caregiver on Monday that offers another example of the importance of having a personal connection with Kate. It also encouraged me to discover a caregiver who has the personality and skill to give Kate the attention she needs.

The new caregiver came to us for the first time one day last week. The agency had alerted me that she had not had much experience. I found that to be true, but she was more personable than most of the others, and I felt comfortable leaving for lunch. Before leaving, I put on a playlist of music I thought Kate would enjoy. I also explained to the caregiver that music had been very important to us. She told me it was important to her as well. She is active in a church choir and has written and recorded a few songs.

When I returned to the apartment, she was sitting in a chair beside Kate and the two of them had been singing along with a Peter, Paul, and Mary album. I can’t tell you how much it meant to me to see Kate singing with her. To the best of my knowledge, that has never happened with another caregiver. It made a big impression on me, and I was delighted when she was back on Monday.

That experience was a good one as well. This time they were in a conversation when I returned from lunch. I spent a little time checking email, and they continued to talk. It was truly remarkable and another great example of the difference it makes when someone is able to “Focus on the person, not the dementia.”

Sometimes What Looks Like a Bad Day (or weekend) Turns Out to Be a Winner.

As I hope my previous posts have conveyed, Kate and I have lived well with Alzheimer’s. Regular readers will also recognize that I do mention some of the challenges we face. Many of my posts describe a combination of our ups and downs. This post is one of those.

A month ago, we lost a caregiver who comes every other weekend from noon until 7:00. The agency sent a new person on Saturday two weeks ago, but she was with us only one day. The agency couldn’t find a replacement for her on Sunday but were able to get a “floater” who works on the grounds to help me get Kate up and ready for the day and another one to help me get her to bed. That meant I didn’t go out to lunch that day. The upside was my being able to take Kate for ice cream by myself. This was only the second time I have done that without a caregiver. It’s nice to have alone time with her.

Between then and this past weekend, the agency found a replacement who was prepared to work with us every other weekend. Her first day was this past Saturday. It got off to a rocky start. Like most of the other caregivers, she has another job, full-time on the night shift of a skilled nursing facility. Not surprisingly, she was tired when she got home that morning and lay down to rest. Unfortunately for us, she didn’t wake up in time to be at our place at noon. She was an hour and a half late.

She’s an experienced CNA (certified nursing assistant) and handled the basic tasks quite well. She only needed a little more experience with Kate’s situation. Like others, she didn’t show much interest in Kate herself, just the basic tasks of changing her, dressing her, etc. I did tell her that one of the things I wanted her to do was to bond with Kate and that I understood that would take some time. I also mentioned that Kate is sensitive to being ignored and sometimes expresses that when I get in a conversation with another person while I am with her. Despite this, I don’t recall her ever trying to communicate with Kate apart from the moments when she told Kate what she was about to do for her, something all CNAs learn as part of their basic skills.

When she left that night, she said she would see me the next day. Early the next morning, I received a call from the agency letting me know that she could not come and that they were looking for a replacement. They weren’t successful, so the person who called came over to help me get Kate up.

Once again, I had to skip going out to lunch. I know that seems like a little thing, but it’s a significant part of my selfcare. I go to the same restaurant Kate and I went to every Sunday for over five years. I know most of the personnel and some of the other customers who are also regulars. It’s a relaxing getaway for me.

On the other hand, it gave me an opportunity to spend more time with Kate. I looked forward to our going out for ice cream together as we had done two weeks before. Unfortunately, Kate experienced a delusion that troubled her and didn’t want to go out. I tried several times, but she refused to leave. Shortly after 3:30, I resorted to my old standby, music, to see if I could change her mood. Recently, I’ve found “Edelweiss” helpful in getting her attention and calming her. I tried once again.

We were seated side-by-side, and I leaned over and started singing. After going through it a couple of times, I played it about six or seven times on my audio system. It worked like a miracle. She was cheerful and had forgotten whatever was worrying her. More importantly, she was cheerful the rest of the day and evening. That’s not even the best part. Since our caregiver didn’t show, I was able to take her to dinner by myself. That was the first time we had been to dinner without a caregiver.  Kate was talkative. We actually engaged in conversation that had some of the elements of a normal one. She seemed to process my questions and asked me questions as well. Anyone watching from a distance would have thought we were just another married couple having a pleasant dinner and conversation.

Of course, her aphasia prevented my understanding everything she said. I am also sure that anyone who might have overheard us, would have wondered if I had any idea what Kate was talking about. For me, it was one of the most enjoyable “Happy Moments” we’ve had in a long time. The last time we had eaten together outside the apartment or our home was before Thanksgiving two years ago. So, what looked like, and could have been, a bad weekend turned out to be something special. It was an early Christmas present.

One of Those Days

Kate and I have many good days, but not always. Sunday was one of those exceptions. It began around 9:00 when I got a call from the agency that provides two of our three caregivers. The one who was to come was sick, and they were looking for a replacement. They had identified someone who might be able to take her place, but she would be on overtime, and they wanted to know if that would be all right. I gave my approval.

A little later, I received another call telling me that person couldn’t come. After we hung up, I called them back to say that if they couldn’t get someone for the whole day, I would be happy to have someone for a short time to help me get her up for the day and return later in the day to help me get her to bed.

They found someone who could come under those conditions and that she would not be on overtime. They let me know that she was inexperienced and would need my help if I were agreeable. Since I’ve been an active participant in Kate’s care, I agreed.

When she arrived, I learned that she had been in training as a medical technician. She had taken a temporary position with the in-home care agency to make a little money before continuing her previous educational plans. It didn’t take me long to find out that she was not skilled in the kind of care Kate requires. She wasn’t good at changing or dressing someone in bed, and she had never used a lift for a patient.

This was not an ideal situation, but I began optimistically with the thought that I might have learned enough to make things go smoothly. I think of myself as a pretty good assistant to our regular caregivers, I quickly learned how unskilled I am in direct patient care and training of other caregivers. Trained and experienced caregivers clearly handle situations like this without any great difficulty. I won’t go through any of the details, but it took us at least twice as long to get Kate up and in her wheelchair. Fortunately, using the lift went more smoothly.

In addition, Kate was more confused and not as cheerful as she is other times. I’m not sure that I have mentioned that for the past 4-6 weeks she has had more experiences when she doesn’t recognize me. That normally disappears after I give her my name and tell her some of our history (where we met, falling in love, having children, that we have been happily married more than 58 years, and that I love her dearly ). After that, she usually responds to me as though she knows me. It usually lasts for the rest of the day or at least a few hours. On Sunday, she asked, “Who are you?” off and on until we retired for the night.

I’ve frequently mentioned that I like routine. This was a day that was far from that and, therefore, somewhat uncomfortable for me. That was particularly true in connection with the difficulties with a substitute caregiver. I had become comfortable and dependent on our regulars. A new and unskilled caregiver was an abrupt change.

Despite that, there are good things to report. For the first time, I took Kate for ice cream without a caregiver. We went down the main hallway that is officially named “Main Street.” Our building is at one end, and the café with ice cream is almost at the other end. It was a nice stroll and a treat to enjoy time to ourselves.

After the caregiver left that night, Kate and I had another good evening. At first, she couldn’t remember who I am. I gave her my routine explanation a couple of times and ended by telling her how much I love her. That seemed to stick. We watched YouTube videos with music by The Kingston Trio and The Brothers Four. The day ended well as it always has.

Always a Few Glitches. You have to Expect That.

I think a lot about how the world is and how we think about it. Right now, I am feeling very grateful. Kate has been home from the hospital just over a week, and the past two days she has shown significant signs of recovery. She may not return to exactly the way she was before COVID; however, if we can get her on her feet again, she might be pretty close. She was able to eat and drink successfully if not in the same quantities as before. She was also more cooperative when moved from her back to her side and when we changed her. I have found it helps a lot for me to lie beside her in bed and hold both of her hands while the caregiver takes care of these things. She seems to find some sense of security in that.

I’m also grateful for the numerous people who have sought to make my life less stressful during the past two weeks or so. These interactions have included Kate’s doctor’s office (a great geriatric practice), the hospital’s doctors and nurses, the Home Health agency personnel (especially their nurse and the physical therapist who did an initial assessment), our church, the friends and family who have called, written, or dropped off a meal, three different servers at restaurants we have frequented over the past few years (one of whom brought us a Thanksgiving dinner) as well as a host of Twitter friends who have expressed their concern and support including one who phoned me twice from New York and the AlzAuthors management team who in addition to their emails and Twitter messages of support gave me a gift certificate for Panera. My experiences with each one have reinforced something I already believed in – the basic goodness of people. I’m a rather self-confident and self-reliant person who has been lucky not to have needed such acts of kindness before now, and it has made quite an impression on me. I think I will be “paying it forward” for a long time to come.

In the midst of this largess of support, a few glitches have occurred. Both of the agencies who have had to work quickly to provide the help I had requested made mistakes on the schedule I had asked for – 8 hours a day starting at noon and ending at 8:00. One agency provided help between 1:00 and 7:00, the other between 11:00 and 7:00. In both instances, it wasn’t a misunderstanding. Those were the hours they were able to work out with their CNAs. I called one of them to say that on Monday I have a Rotary meeting at 12:30 and would like someone at noon. They corrected that right away. I talked with the other agency about their schedule of 11:00-7:00. I wasn’t rigid about the schedule I had requested and agreed to try theirs to see how it worked.

The next issue wasn’t anyone’s fault. The caregiver that had been coming on Monday and Wednesday and was my favorite declined to return after the first day because she has a back problem. She felt moving or changing Kate was going to be a problem. I was disappointed, but I could hardly blame her.

The day after I received that news I was eagerly awaiting a visit by the physical therapist at the Home Health agency who was to train me on the Hoyer lift. It turned out there had been a communication problem between the social worker at Kate’s doctor’s office and someone at the Home Health agency. The social worker at that same agency was scheduled to come to the house late that afternoon. She simply got tied up with other cases that day. I was assured that she would come late the next afternoon. It was 6:30 before she arrived, and she was here close to an hour and a half. It became obvious to me that she takes a lot of time learning about her clients’ situations and needs. She liked her, and I never said a word about her not coming the day before.

The following day I received a call from my other in-home care agency letting me know that the CNA who was to be with us that day was sick, and they hadn’t been able to find a replacement on such short notice. Before I could feel any disappointment, the person who called asked about the most important things I wanted to the caregiver to do that day. I told her it was changing Kate, getting her on her side, feeding her lunch, and changing her again late in the day and giving her dinner. She said she would come over and take care of those things for me. I thought that was going beyond the call of duty but accepted her offer. It turned out that although she works as the scheduler in the office, she is also a CNA and very skillfully handled her responsibilities with Kate. I was liked her too.

Given the stress I had been under, I might have been upset (frustrated? disturbed? angry?) by any one or a combination of these glitches, but I didn’t feel that way. I was simply too moved by how much everyone was working to make my life easier that I couldn’t be upset. There will always be bumps in the road. These won’t be the last ones.  It’s important to keep them in perspective even when we are stressed.

Thanksgiving and the Day After

Because of the pandemic, I had expected our Thanksgiving would be different, but I had no idea that we would be so directly affected by COVID. As it turned out, however, it was a Thanksgiving for which I was truly grateful. Kate’s coming home from the hospital made all the difference in the world. The bonus was that she was much stronger than I expected and appeared quite rested.

I will say that her return didn’t go exactly the way I hoped. When I spoke with the doctor that morning (Wednesday), she said that Kate would probably leave around 3:00 or 3:30. I conveyed that to the agency. They said they would have someone at the house by 4:00. At first, I thought that might not give me as much time as I wanted to brief her before Kate’s arrival.

That turned out not to be a problem. At 4:30, I received a call from the hospital saying they were about to release her. It’s a 20-minute ride from the hospital to our house, so I was confident they would be here by 5:00 or shortly thereafter. She didn’t arrive until 7:30. The CNA was scheduled to leave at 7:00 but stayed until 8:00. My uneasiness about Kate’s getting home so much later than expected was immediately forgotten when I saw her.

Once she was in bed. I played YouTube videos that she enjoyed until after I had showered and was ready for bed. It was a lot like our lives before she left for the hospital.

Thanksgiving morning she was awake at 8:30 while I was in the middle of my morning walk. I went to the bedroom and found that she wanted to rest a little longer, so I finished my morning walk. Then I went to the bedroom where I spent the next two hours with her until 11:00 when the  CNA arrived.

Although Kate had met her the night before, I reintroduced her. Kate received her as she would a guest in the house. I told her that I thought we would need more help now and that Tisha was a nurse whom I had asked to be with us while she was recovering from her stay in the hospital. She accepted that without question and agreed that we would need the help. I don’t think, however, that she really had any concept of why Tisha was here.

I was especially pleased when we were able to get her out of bed about 1:30. By this time, she was tired and back in bed before 2:30. We put her back to bed where she remained the balance of the day.

She didn’t sleep much, however. She dosed a little but was awake in bed most of the afternoon. I thought she would go to sleep easily that night, but she was concerned about something she need to do and wanted me to help her. I could never understand what she was talking about, but her concern lasted a good thirty minutes or more. I took the approach of simply comforting her. I told her I would help her, and it might be better if we did that in the morning. I took her hand and told her I had missed her and was very happy to have her back with me. I talked about the fact we had been together so long that it didn’t feel right when we are apart, something with which she agreed. That conversation diverted her attention from whatever was disturbing her.

The next day (yesterday) she was wiped out. She rested the entire day except for those moments when Tisha changed her or tried to move her to a different position.

Two different nurses came by for intake interviews. One was from the new home care agency we are using. The other was from the Home Health agency. Apart from the information they gathered from me, they took Kate’s vitals. Neither was bothered by the fact that she was resting/sleeping so long and said we should let her rest through the day. Tisha and I did just that.

Kate was awake when Tisha left, and we spent a couple of hours watching opera videos on YouTube. It was a nice way to end the day. I was afraid that Kate would be awake all night, but that turned out not to be a problem. She went to sleep easily and slept through the night.

Today we have a new person who will be helping us. I hope she is as good as Tisha and that Kate will be awake a little more. As we’ve been doing, we’ll take it a step at a time and adjust accordingly.

A Day of Anticipation That Ended in Disappointment

Yesterday began with a meeting with the owner of the new (to us) agency that is providing the help this week and in the future. This will be in addition to the three days a week now covered by our current agency. We had a good meeting. I feel very comfortable with them. That is especially true after my interaction with three of his staff last week. He was here about an hour. During that time, I gave him background on Kate and showed him the key areas of the house with which he and his staff should be familiar. He had a CNA prepared to be at our house at noon, but we decided I should call him as soon as I heard that Kate was being released. The nurse and the CNA were to head to our house for a brief orientation and to be present to greet Kate upon her arrival.

In the meantime, that gave me time to make a few preparations. When Kate’s mother lived with us, we had bought a steel ramp that we used to make it easy for her CNAs to get her down the two steps from our family room to our patio. Her mother passed away in 2005. It has been stored in our garage since then. Although it is very heavy, I was able to slide it across the floor of the garage and lift it in place on the top of two steps into the house.

Word about Kate’s hospitalization had gotten around, and I received a number of phone calls and emails offering support. This is the first time I have ever been in this position. I quickly learned something that I had only thought of before when it was someone else in our position. Some people hesitate to call because they may catch me at a bad time. My personal feeling as a recipient of such calls is that they are welcomed. I did have to cut short two or three when I received a call from the hospital or someone else with whom I was coordinating Kate’s return. I found the conversations themselves to be therapeutic. They also filled my day as I was somewhat nervously, but eagerly, waiting to see Kate for the first time in six days.

Shortly after 3:00, I received a call from Kate’s doctor at the hospital. She began by telling me it was her first time to see Kate and was trying to get a clearer picture of her “baseline” before COVID. I filled her in on the fact that she had been declining recently but had been able to stand and walk and was eating well. I explained that COVID had pushed her over the edge, and she had been very weak.

Then she told me that one of the things they had been monitoring involved a measure of muscle tone or strength. I wasn’t too clear on this, but it related to her ability to walk.  The measure had gone up to 700 from 200. The doctor thought it might have something to do with hydration. Kate has been on an IV to keep her hydrated, but she pulled it out the night before. They want to try again and see if they can improve the numbers before releasing her. She went on to convey that she didn’t want my expectations to be too high for her immediate recovery.

This was a gut-wrenching way to end a day of anticipation of Kate’s being back home with me. Perhaps, I will get better news today.

Good News

I’ve made no secret of the fact that Kate and I have faced serious challenges during the past 10-12 days, but we are beginning to see rays of sunshine. My conversation with Kate on Sunday afternoon was one of those. Yesterday, I continued to see a few things falling in place that will ease our burden significantly.

Yesterday morning, I received a call from the new agency with which I have been arranging additional help for this week and in the future. They confirmed that they have someone who can be with us today through Friday and then again on Sunday while they continue to locate a person for Saturday. They will be here from noon until 8:00 p.m. each day. I chose that time period because those are the hours that Kate is usually awake. She rarely gets up before noon these days and is normally in bed by 7:30 or 8:00. As with so many other things we have faced, flexibility is essential. If this schedule doesn’t work out, I’ll change it. I also contacted our existing agency to increase from four hours each visit MWF to eight.

Of course, the best news is that Kate is coming home today. I suspect that will be this afternoon. They are supposed to call me regarding a time. She will be coming home by ambulance.

When I spoke with the hospital yesterday, they said they are recommending the full plate of services for Home Health Care paid by Medicare. I don’t know that Kate will need or qualify for all of them. We will learn about that after her assessment. I spoke with a representative yesterday. He is awaiting my call to tell him when Kate is coming home.

So, how am I feeling about all this? The truth is that I am hopeful and a little sad and apprehensive about what lies ahead. I want to think that Kate’s strength will eventually improve to her pre-COVID level, but I am not confident since she had been on a steep decline in the preceding weeks. The fact that she has been bedridden for nine days is of concern as well.

I am also uneasy about her overall mobility. Will this experience be the catalyst that makes her wheelchair bound? If so, that will be a dramatic adjustment for both of us. It would obviously make if more difficult for us to get out and about. That doesn’t mean we can’t do it. I see people in wheelchairs almost everywhere we go. If others can adapt to it, we will as well. I am confident of that.

Follow-Up to Previous Post on In-Home Care

I closed the previous post with an expression of optimism regarding our new Monday/Wednesday sitter. That was right after both of her regular visits last week. Thursday, I got a call from the agency that our Friday sitter couldn’t make it and that Cindy, the M/W sitter, was able to come. I thought that was good since that would mean Kate would have three consecutive visits her. Although she can’t remember her sitters by name, she does sense some familiarity over time.

That visit went especially well. When Kate heard her say goodbye, she looked sad and said, “You have to go?” Cindy told her she would be back next week. Then Kate said, “I love you.” I usually refer to all the sitters as “friends” when I mention them to Kate. I am hopeful that Cindy may truly be one.

An Update on In-Home Care

Five weeks ago I reported that the stability of my three-year arrangement of sitters for Kate had suddenly come to an end. I lost the person who came on Monday, and the person who came on Wednesday and Friday had some changes in her life and dropped Wednesday.

On top of that COVID-19 has made it hard for the agency to find replacements. That led me to contact someone we had met at our music nights at Casa Bella. She started a business providing services for seniors about a year ago. I gave her a call, and she came to my rescue on a day when I had an ophthalmologist’s appointment.

Wouldn’t you know it was also a day when Kate didn’t want to get up. As it approached time for the sitter’s arrival, I gave up and decided to let her sleep/rest. This was a time I hoped she would sleep be in bed until I returned. Our friend isn’t really in the business of providing personal care, and I didn’t want to put her in the position of getting Kate to the bathroom and dressing her. Since I knew that Kate would not remember her, I was also concerned about her waking up and not knowing who this person was.

As it turned out, Kate wanted to get up before I came home. I never got the story from our friend, but she had taken care of everything. They were chatting happily when I arrived. I regretted that both of them had been put in this spot, but they seemed to have gotten along fine. Since then, I have used the friend on two or three other occasions. It is especially nice that she does not require a minimum time. Twice she has been here an hour and a half. The agency has a four-hour minimum.

Next, the Monday/Wednesday sitter had to leave her position as a result of a back injury; however, we had a stroke of good fortune. One of the agency’s regulars had an opening for those days. Coincidentally, I discovered that I know her husband. He is an ex-banker turned farmer. For several years, he has dropped by our office in a truck loaded with fresh produce. I have also encountered him at the American Red Cross. He is one of, if not, the leading donor in our area. He is nearing his 1000th donation of blood or platelets.

The best news is that she is the best sitter we have had since I first brought in help three years ago. Having said that, I did run into one issue that seems to have been resolved. I thought she was great because she took more initiative to engage Kate in conversation and other activities. The only problem was that she seemed to move too quickly for Kate. Each of the first two times she was here, it appeared they had gotten along fine. When the sitter left, however, Kate’s eyes rolled. One of those times, she said, “What’s going on here?” On another visit, the sitter brought her iPad to play some children’s audiobooks for Kate. I suspected that was going to be overwhelming, and it was.

When I returned from another visit, Kate was asleep on the sofa. That gave me an opportunity to talk with the sitter. I told her I was very pleased that she was now our regular Monday/Wednesday sitter. Then I asked if she had heard of The Horse Whisperer? She hadn’t, and I went on to explain his approach to breaking horses by very gradually gaining their trust. She confessed that she was a little hyper but would try to approach Kate more gently to establish her relationship.

She has been back twice since then, and the visits have gone very well. Kate had rested a short time during her last visit. The rest of the time they had looked at photo books and read stories. I took it as a good sign that Kate didn’t express any concern when I left, nor did she seem to be relieved when I returned home.

I am optimistic about the future with her. Her hyper nature has a positive side. She has taken more initiative to help me with the laundry, replace bed sheets, and looks for other things to lighten my load. She also has a touch of OCD. I notice that in the way she folds clothes and makes up the bed. If she can stick with us, our in-home care will be the best ever.

Issues with In-Home Care

It was almost exactly two years ago that I first engaged sitters for Kate. Except for a handful of exceptions, the schedule has remained the same – four hours a day Monday, Wednesday, and Friday afternoon. We’ve been fortunate to have few changes among the sitters themselves. One of them has been with us the entire time except for the first week or two. That has been especially helpful since, until recently, she came two afternoons a week. We’ve had three or four sitters for Monday, but two of them were with us less than a month. I believe the continuity has been beneficial for Kate.

The past few months have been different. We lost our Monday sitter the first of June. Fortunately, the person who replaced her was a woman who had been with us forty weeks during our first year and quit to take care of her own health issues. I was glad to have her back.

Then our Wednesday/Friday sitter gave up her Wednesdays. She has been in great demand by the agency. That has been especially true during the pandemic. She was moving into a new house with her mother. She needed a break, and I understood. It turned out the Monday sitter was able to take the Wednesday slot. That has worked well.

After that, I had my own mini-crisis with respect to my blood pressure that was no doubt related to the increasing stress of caring for Kate. That led me to make a few changes. One of those was to add a sitter for Thursday. At first, it looked like that might be a problem. When I talked with the agency, I learned that they have been impacted by the pandemic. They don’t have as many people who are willing to accept assignments, and it is more difficult to recruit new ones. As it turned out, they were to arrange for our Monday/Wednesday sitter to add Thursday as well.

Over the weekend, the agency called to say that she had injured her back and would not be able to come on Monday. They called back that morning and told me they could not locate anyone else who could. Unfortunately, that was my day for Rotary, so I missed that.

It was also a day when I had a 2:00 appointment with my ophthalmologist. That meant I would have to take Kate or find someone else to stay with her. At first, I thought I might take her with me. I have done that on other occasions; however, she is bothered by wearing a mask. It is a challenge for me to get her to wear one from our car to a restaurant. Knowing that we might be there over an hour, I preferred to leave her home.

That prompted me to call someone we had met through our music nights at Casa Bella. Last fall, she started a business providing services to seniors. I know someone who uses her as a driver, but she does a wide variety of other things. I put in a call to her. She was available and came to my rescue.

I know that Kate didn’t remember her, but she must have seemed familiar. We sat together many times over the past five years. At any rate, they got along well, and Kate didn’t object when I left. She was resting when I got home two hours later, but according to my friend, things had gone well. I am glad I called her. She is an appealing person in whom I have confidence. If I encounter another situation like this, I won’t hesitate to call her.

The question now is “Will the sitter who injured her back be able to return soon?” I have no idea nor does the agency. Yesterday afternoon, I received another call from the agency saying they had been unable to locate anyone for today or tomorrow and are working on a replacement for next Monday. In the meantime, I placed a call to my friend who is available if the agency is unsuccessful. I have a dental appointment a week from today and told the agency about it. I plan to call my friend today to see if she could be a backup for that day as well.

Suddenly, my rather stable in-home care arrangement is no longer stable.