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.

Caregiving: An Exercise in Problem Solving

As noted in my previous post, life is going well in our new home. That doesn’t mean we don’t have any problems. Caring for someone with Alzheimer’s requires continual problem solving, but we do have successes. Among them is being able to get Kate out of bed every day, something we hadn’t been able to do for months after her return from the hospital on Thanksgiving. We also take her out of the apartment though hallways that connect us to all the other buildings in our complex. That’s been helpful in terms of introducing Kate to other residents, and stopping along the way for ice cream hasn’t been bad either.

We have encountered one troublesome problem during these outings. Kate doesn’t like her feet to be on the footrests of her wheelchair. She is quite strong, and the caregivers and I found that she stiffens her legs when we attempt to place each foot on its rest. We almost always succeed, but she protests loudly, something that stands out in our quiet hallways. Several times we’ve had to return to the apartment before going very far. When we succeed, she often takes one foot (her left) off the rest and drags it along the floor. That creates a safety hazard for Kate and also makes it decidedly more difficult to push the wheelchair.

I explored ways to address the problem for several weeks and didn’t find just the right thing. My initial thinking focused on the fact that it was her left leg that was the bigger problem and that it gradually worked its way to the right until the foot fell to the floor between the two footrests.

I talked with someone at a local medical supply store who wasn’t encouraging. He told me there are boards that are designed to be installed across both footrests, but he indicated a number of problems with them. Then I began to consider why Kate had so much trouble getting her feet on the rests to start with.

For months I noticed that she keeps her legs crossed while she is in bed. Since she is in bed about 18 hours a day, I wondered if she had experienced
muscle deterioration. A number of times I thought about having a physical therapist come out for an evaluation. I mentioned this to Kate’s doctor during her appointment two weeks ago. He took action for me and requested both a physical and an occupational therapist.

Before the PT’s first visit with Kate, I decided to check on Amazon for footrests that might address our problem. I found what looked like a potential solution the day the PT came. It’s a solid footrest that sits on top of the existing footrests and has a raised padded portion against which her calves can rest. I showed it to the PT who thought it was worth a try. I ordered it immediately, and it came in the next day. It works beautifully. We’ve used it four days in a row without a problem. When we put Kate in the wheelchair, her feet rest naturally on the new footrest. More importantly, she must feel comfortable because she keeps them there. That has made life much easier for Kate, her caregivers, and for me.

But, wait, there’s more. It turns out the therapist himself is the best I can imagine. He seems quite young but combines several important qualities, his knowledge, bedside manner with Kate, and a desire to explain what he does and why. In addition, he is able to explain in non-technical terms what the caregivers and I should do to build on what he does.

As it turns out, we found a way to keep Kate’s feet on her footrest as well as a physical therapist who is helping us acquire a reasonable set of expectations for someone in her physical condition. She is quite strong, but she is not going to walk again, and we’re not likely to need much PT. Although I had held this assumption previously, it was good to hear it from an expert. He also offers good tips for everyday care. Now, we’re ready to face whatever new issues arise, and I know they will.

The Final (?) Update on Kate’s Reflux

Yesterday was a good day for Kate. I gave her omeprazole in the morning and three doses of Mylanta during the balance of the day. I am glad to say that she had no recurrence of the episodes that had bothered her (and me) over the past week. Mylanta did the trick.

Tomorrow I’ll report the news to her doctor. I’ll see if she wants us to continue the Mylanta or simply rely on her omeprazole once a day. I suspect it will be the latter now that the crisis is over.

I will also speak with her about a transition to the physician’s practice right here, in fact, next door to our building. She had suggested this would be a good option for us at one of Kate’s recent appointments. I really like her present doctor, but I believe having her doctor next door would be an asset in the future. He makes house calls, something that would be of great benefit to us. I should add that I have known the doctor since at least 1998 when my mother became a patient at the geriatric practice with which Kate’s doctor is associated. The doctor here is the one who started that practice and was a neighbor of ours. I feel sure Kate would be comfortable with him, and I know I would.

I’m glad the mini-crisis is over. We can get back to settling into our new home.

Update on Kate’s Reflux

A few minutes ago, I read a column in the New York Times that focused on the changing views of COVID-19 by the scientific community from the beginning of the pandemic to the present time. Although the time frame is so much shorter, I could relate to my own thoughts about Kate’s recent coughing episodes reported below. The story took an unanticipated turn yesterday. Having read the Times article, I feel a little more cautious about any conclusions I now hold. With that in mind, let me tell you more.

When I finished the previous post, I was reasonably comfortable that Kate’s problem was reflux and not an issue with her heart. During the night, she coughed two or three times with an accompanying yell of discomfort. The next morning (yesterday) I was not so comfortable. I realized that the medication needs a little time to work, but I began to feel that her symptoms were more like a sharp pain than that associated with reflux. I intended to call her doctor again, but her nurse called me first. I discovered that I was supposed to have given Kate Mylanta as well as omeprazole. As soon as the caregiver arrived, I went to the pharmacy to get it. I gave her three doses between then and the time she went to bed. The doctor said that if this didn’t stop the episodes, she doubted Kate was experiencing reflux. It could be a cardiac issue, and we should go to the hospital.

She had only three episodes after the first dose of Mylanta. The first one occurred almost immediately after the first dose. That could have been related to a swallowing issue and not reflux. Only one of the other two was like the episodes that concerned me. I was hopeful that she would have a good night, and she did. She coughed three times over a couple of minutes, but it was not the kind of cough she had had before. It was more like clearing her throat, something that is common for her. She showed no signs of pain although she said, “That hurt.” following one of the coughs. It sounds like the Mylanta may have taken affect. I’ll give her omeprazole and another dose of Mylanta as soon as she wakes.

Once again, it looks like “All’s Well That Ends Well” is an appropriate title for this story. I  hope to corroborate this conclusion in another post.

“All’s Well That Ends Well”

Day before yesterday, we had our first potential crisis in our new home. It actually began late last week when Kate had periodic episodes when she coughed and/or yelled “Oh, Oh, Oh!!!” Sometimes her yell was quite loud. She also looked troubled. When I asked what was wrong. She said, “I don’t know.” I asked if she were in pain, but she was unable to answer the question though it certainly sounded like she was. The surprising thing was that the problem didn’t last long and didn’t occur again for hours or even a day later.

During the afternoon three days ago, she had several of these episodes in rather close proximity. Just before dinner, the caregiver noticed that she put her hand under her left breast. We both thought that might indicate the source of the pain. She got along all right until about 10:15 that night when she woke me with her “Oh, Oh, Oh” and a cough. I gave her some Tylenol, and she was soon back to sleep.

The rest of the night went well, but around 7:00 or 7:30 yesterday morning, she had the same problem. At 8:30, I called her doctor’s office and left a message describing the symptoms. About 9:45, I received a call from her doctor’s nurse who relayed a message from the doctor that we should consider calling EMS and going to the hospital to be checked for a heart problem.

Before calling EMS, I called one of the staff who handles residents issues as they move in. Since our building is new and requires key entry, I wanted to know what I should tell EMS. Then I placed the call. Less than ten minutes later, the first crew (with the fire department) arrived. One of them got basic information from me while another checked Kate’s vitals. In another ten minutes a crew from EMS arrived.

Not too much later, the leader of the EMS crew asked to speak to me. He said all her vitals indicated that she was not having a heart attack. All her signs were normal. He wanted to know if I still wanted her to go to the hospital. I told them about the trauma of her hospital experience with COVID and said I didn’t want to send her to the hospital without more evidence of a serious condition. I called her doctor but knew they wouldn’t be able to get back to me to help with the decision. I left the message that I was keeping her at home.

When they called back a short time later, the doctor agreed with my decision and suggested this might have been a problem with acid reflux, something that has been an issue for several years until the pandemic. Previously, we had eaten out twice a day, not counting trips to Panera where she got a blueberry muffin. During the pandemic, our diet was more normal, and I had discontinued her reflux medication and had informed her doctor. Since our move two weeks ago, she has eaten heavier meals than she had previously. Sometimes the servings are quite large, and she eats everything. Two times last week, I felt she might be eating too much and suggested the caregiver not give her any more of the rice or pasta and focus on the meat and vegetables. I think the new eating habits might have brought on acid reflux.

Of course, we don’t really know for sure that reflux is the problem, but the more I think about it, the more I think that’s it. In particular, the coughing sounds more like reflux than an ordinary cough. The episodes themselves are periodic, and she appears perfectly fine most of the time. She is back on her medication, and it should take affect in a few days.

Apart from the morning, the day went well. We had a visitor from the agency that provides most of our caregivers during the afternoon, and Kate was in rare form. She even called me back this morning to say how glad she was to meet Kate and how struck she was by the way she handled herself.

So, “All’s well that ends well.” I am relieved.

How is Kate?

I am often asked how Kate is doing. Typically, these are situations in which I have little time to elaborate. For that reason, I’ve developed short answers that do the job. For years, I said, “She’s doing remarkably well.” During the past two years, I’ve been prone to say “She’s declining, but we still enjoy life and each other.” More recently, I’ve said, “Life is more challenging now, but we still enjoy life and each other.”

Her bout with COVID, especially her hospitalization, brought about the most abrupt changes she has experienced during the ten years since her diagnosis. Now when people ask me about her, I say, “She’s making progress but very slowly.” Here’s a fuller story.

Before we got the virus, Kate had entered the last stage of Alzheimer’s. That involved lots of delusions and hallucinations. In addition, I was concerned about her long-term mobility. It was becoming more difficult for her to get up from a seated or a prone position. For years, she had been frightened by sudden noises. I had to warn her when I was going to get ice from the ice maker. Even when I did that, she was often shocked. Along with that, she became uneasy going up and down steps. Her physician and I agreed that she would probably skip a walker and gravitate to a wheelchair because she was unlikely to be able to maneuver a walker. A week or two before she tested positive for COVID, I had to enlist the help of the owner of the Mexican restaurant where we had just finished our meal because she was afraid to step off the curb to get in the car.

A large percentage of the time, she did not know that she was in her own house. Thus, the experience of being taken from her bed to an ambulance and then to the hospital for eight days must have scared her to death. I have compared it to a person’s being kidnapped. Even though the hospital was a place for her to get help, she wasn’t in a position to grasp that. I am sure she was frightened off and on during her entire stay.

She quickly recovered from the physical effects of the virus, but she remained traumatized when she arrived home. We were able to get her up for less than an hour her first day home; however, she was too scared to get out of bed for the next seven weeks.

Today marks the sixteenth week since returning from the hospital. She has made slow, but very gradual, progress. Her physical recovery from the virus hasn’t been a problem. She never had any fever or breathing problems. She recovered quickly while in the hospital from the symptom that took her to there – weakness.

After coming home, we had Home Health for two months. Physical therapy was the primary object of their care. They discontinued service because she wasn’t responding as quickly as they had hoped. Once again, the problem wasn’t anything physical. It was, and still is emotional. She is simply frightened almost every time we try to move her in any way. That involves changing her, lifting her out of bed, putting her into her wheelchair, and putting her back in bed. During these moments, she can be quite combative. She often yells and screams at us. Sometimes she tells us to “Shut up” and “Get out of here.” On some occasions, she presses her nails into my arms and those of her caregivers.

There is one good thing. Her anger usually ceases as quickly as it comes. It is not unusual for her to apologize or thank us after each event. Frequently, however, she is very passive, non-talkative. That normally lasts a few minutes but can last as long as an hour or more.

During the first few weeks after her hospital stay, we did our best to minimize the problem because we felt we were continuing the hospital experience and didn’t want to aggravate her emotional problem. After seven weeks, we decided she needed to get out of bed if she was going to make the kind of recovery we hoped for. We noticed there were occasional times later in the afternoon when she wanted to get up and took advantage of it. At first, the caregiver (with a little help from me) lifted her from the bed to her wheel chair. We found that difficult and gravitated to using a Hoyer lift. Now, that’s the only way we get her up from her bed or a chair which we do four or five times a week. One of the things I like about this is that she and I get to eat dinner together at the table.

The lift works well, but Kate often protests at several points in the process. Each step involves maneuvering her in some way. Fortunately, once she is suspended in the air, she generally relaxes. This process is definitely less offensive to her than changing her, and we depend heavily on it.

My role in everything is to make Kate feel more comfortable. When we change her or get her ready for the lift, I get in bed and tell her what we are going to do. I also tell her that she can help by remaining calm while the caregiver does what she needs to do. When it’s time to turn Kate on her side, I ask Kate to give me a hug, and I put my arms around her. I count to three and pull Kate toward me while the caregiver pushes in the same direction. Kate usually screams or yells, but, once on her side, she is quiet. She holds me tightly and general strokes my back, and I do the same to her. Once in a while, I say, “We never imagined we would be doing this when we first married.” Despite the intended humor, this is a touching moment for me. Throughout the process the caregiver and I tell her she is doing well and thank her for helping us.

Over time, Kate has protested much less than before, but she continues to resist at least minimally most of the time. Last week she went several days with little combativeness. Then over the weekend, she gave us problems. What I hope for is that she will gradually sense that we are not going to harm her, but I am prepared to accept that she may never walk on her own again.

The best thing I can say is that she is happy most of the time, and our relationship never been stronger (except at those moments when we move her). Our evenings after the caregivers leave continue to be the best part of our day. This may not last forever, but I will always be grateful for moments like these and so many others we have shared for almost fifty-eight years.

Sundowning

Among the many ways in which Kate and I have been fortunate is avoiding sundowning (sundowners, sundown syndrome), and, at this last stage of her Alzheimer’s, I began to think it was something we might not face. Not everyone does. To the best of my knowledge, my mother never did. I know my dad never talked about it. Since I visited them regularly in the late afternoon, it seems I should have had some personal observation if she had the problem.

I am also mindful that life is always changing. That is especially true with dementia. Nevertheless, I was caught a little off guard this past Friday when Kate, who had been happily resting in her recliner, became more talkative. It was more than just talking. The pace was faster than usual. It seemed like she was a bit hyper. Although it was late in the day, the thought of sundowners didn’t cross my mind. After all, I had observed this kind of behavior before and at earlier times of the day.

It was only at dinner when she spoke very sternly to her caregiver who was feeding her that I thought she might be sundowning. That was repeated numerous times before she finished eating. Her mind appeared to be focused on her own thoughts, not food. When it was time for dessert, she had her usual ice cream in which I mix her evening medicine. The dessert became her focus of attention. After that, she was back to normal, and we had a good evening.

Before the caregiver left, I told her I suspected that had been Kate’s first occurrence of sundowners and asked her opinion. She thought that might be the case. The next two days, we had similar experiences late in the day and during dinner. Each time, it was over when dinner ended.

After the three previous days, I was more prepared for a similar experience the next day. When she has been agitated before, my approach has always been to comfort her by speaking softly and slowly and conveying my love and support for her. That has always seemed to help. Based on what I had read about sundowning, I was doubtful that it was likely to work, but I wanted to try it.

Close to 4:30 when Kate became agitated and talkative. She also felt uncomfortable in her recliner and complained about pain. She wanted to get out of the recliner and go home. I kneeled down beside her and told her I would help her with whatever she needed. That had no immediate effect, but I continued my effort to comfort her. She did cool down somewhat but not completely. She was still disturbed.

The caregiver asked me if I had medications to give her for things like this. I told her the doctor had given me a prescription for Seroquel but I hadn’t used it since two days after Kate returned from the hospital at Thanksgiving. I told her I wasn’t ready to use it again. I didn’t want to resort to medication if I might have success without it.

I felt the need for something to distract her. Of course, I thought of music. I pulled my phone out of my pocket and turned on one of Puccini’s best-known arias, “O Mio Babbino Caro.” It’s a favorite of Kate’s. I’m sure it still is, but it didn’t do the trick this time.

I decided to try the Seroquel. The doctor had prescribed 1/2 of a 25mg tablet.  After giving it to her, I told her how much I loved her. As I did, I thought of another song that she likes and that I have often played for her, “A Bushel and a Peck.” I sang it along with the Doris Day recording. As I did, she smiled and started mouthing some of the words. I played it two or three more times. Then I selected a group of very familiar children’s songs from an album of 100 songs. I started with “The Alphabet Song” and continued with others like “Row, Row, Row Your Boat,” “The Bear Went Over the Mountain,” “Old MacDonald,” and “He’s Got the Whole World in His Hands.” Sundowners was a thing of the past.

We had no trouble at dinner. She happily ate everything. Midway the Seroquel kicked in. She was sleepy. As always we took her directly to bed after dinner. The difference this time was that she fell asleep immediately and slept until 9:30 yesterday morning. Normally, she is awake until 10:00 and sleeps until at least 11:00 the next morning.

Yesterday, for the fifth day in a row, Kate had a similar experience just before coming to the table for dinner. The first signs were a desire to go home and discomfort in her recliner. Again at dinner, she protested the caregiver’s effort to feed her. She ate about half of her meal before I decided to go straight to her ice cream for dessert. That turned the tide, and she was fine the rest of the evening.

Although I am unable to pinpoint the cause of these changes, she is obviously disturbed which makes me believe offering her love and comfort along with pleasant distractions have some therapeutic benefit. How well this strategy will work over the long run remains to be seen, but I am going to continue my preferred approach. I will definitely try comforting, music, and anything else I can think of before trying medication. I don’t mean to suggest that medication can’t play an important role in controlling sundowning. I just think it should be used only after pursuing other solutions. I am also going to be more sensitive to keeping her entertained late in the afternoon before dinner. It might postpone or prevent similar episodes.

Coincidentally, we had a telehealth appointment with Kate’s doctor yesterday afternoon. We talked about this, and she reinforced my suspicion that something other than medication is a reasonable first step in addressing the problem.

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.

Mixture of Positive and Negative Experiences

About 10:00 yesterday morning, I heard Kate say, “Hello.” Via my web cam, I could see that she was sitting up in bed. When I got to the bedroom, I found she was in a cheerful mood but was having another delusion. The only thing I could understand was that it involved teaching in some way. I listened to her for almost thirty minutes before seeing if she was ready to get up. She wasn’t and let her lie down and told her to call me if she needed anything.

At noon, I checked to see if she was ready to get up. I was careful not to move too quickly so as not to cause her to resist. I was able to get her up and to the bathroom where I encountered my first problem. She wouldn’t sit on the toilet. I shifted gears and told her she could brush her teeth. When she finished, I tried again to get her to use the toilet. That didn’t work, and I took her back to the bedroom to help her dress.

When I asked her to take off her soiled underwear, she refused. She wanted to know why. I explained that she needed to put on clean underwear before getting dressed. She never agreed. Then she wanted to lie down. I decided the break might be a better. If she could rest of sleep a little longer, she might respond differently when I tried again.

That worked. I was able to get her up at 1:30. I didn’t have any problem getting her to the toilet and dressed. She was in good humor at lunch. After lunch we spent the balance of the day until time for dinner looking at her photo books. It was a very bright spot in our day.

This is not to say there were no problems. I don’t think I have adequately conveyed how difficult it is for her to understand instructions and explanations or the seriousness of her vision problems. When I gave her a sandwich and a cup of apple sauce, she didn’t know what they were or what she was to do with them. My explanations were only minimally effective. I was only able to get her to eat her sandwich by picking it up and putting it to her mouth. It was similar with the apple sauce. In that case, she only ate what I spoon fed her and nothing more. Part of the reason is that she doesn’t remember what is in front of her, but it also relates to not seeing it.

We ate out for dinner. After parking, she didn’t want to get out of the car to enter the restaurant. She didn’t respond with a verbal refusal but a passive aggressive one. She just sat in her seat while I held the door open with my hand extended to assist her. It took my repeated encouragement to get her to step out.

As we entered the restaurant, we turned to the right to walk past a line of booths. I had already turned down a seat at one of them because there is a step up of about four inches. When I can, I try to avoid things like that because Kate can easily trip. I didn’t think about a problem as we turned to follow the hostess to our table. Her right foot hit the corner of the first booth, and she screamed. She wasn’t in danger of falling, but she was frightened and definitely got the attention of those in the dining room.

We did not have our normally pleasant dinner. She was rather subdued and out of touch with what was happening around her or in front of her on the table. As I always do, I buttered her bread and placed it in front of her. When I saw that she wasn’t eating it, I asked her about it. She couldn’t see the bread on her plate. Similarly, she didn’t begin to eat her food after it was delivered. I had to feed her several bites of her entrée  to get her started. We haven’t been eating many desserts lately. I decided she might need a treat and ordered one. She didn’t know what to do with it. Again, I had to feed her the first couple of bites. She expressed no pleasure and ate very little.

Once we were home, I gave her a photo book to look at while I caught some of the evening news and then my shower. She took interest and spent almost an hour looking at it. She was confused, however, and asked me to help her understand it when I got out of the shower. I told her I would be happy to do that.  After my shower, I suggested she get into her night clothes and the two of us could look at it together.

She was cooperative. I don’t think that had anything to do with my telling her I would look through the book with her. I think I just hit her in a cooperative moment. We spent about thirty minutes looking at the book. Like our afternoon, it was a Happy Moment together. When I suggested we go to bed, she accepted without a problem.

Sunday: The Story Continues

Sunday morning began with another challenge. I keep my iPad beside me at my desk in the kitchen. It is connected to a camera in the bedroom. About 8:45, I noticed that that she was sitting on the floor beside the bed. When I reached her, I found that she was relaxed and fine. She apparently had slipped out of bed while sleeping. (Recently, she has been moving around on the bed a good bit. When she gets in bed, her head and shoulders are in the right place, but her feet often hang over the edge. I move her legs over, but she invariably moves them back. I have been concerned about her falling out and have ordered a bed rail that is supposed to be delivered today.)

I immediately recalled her fall several weeks ago. That one required my calling 911 to help get her up. This time she was in a better position, sitting up with her back against the bed. It was easier but took 20-30 minutes. I put an ottoman in front of her. With a lot of coaching, I got her to put her arms across the top of it. Then with my arms under her arm pits I lifted her while she got her legs in position to stand.

I was able to get her to the bathroom and dressed, and we left for lunch about 11:45. Lunch went well, and we got home just before 2:00.

She wanted to rest and did so for almost an hour. Then she started one of her long conversations, much of which I couldn’t understand. It involved some kind of project she was working on. It’s not that I can’t understand many of her words. It’s that she mixes incorrect words and sometimes unintelligible words. The conversation lasted almost an hour and a half.

I finally distracted her by putting her robotic cat in her lap. That entertained her until we began a Zoom call with our son. That went well. As I did on our previous call, I left for 5-10 minutes while she and Kevin talked. I hope to do that in our future calls as well.

It was time for dinner after that, and we got a takeout meal. She was quiet during most of the meal but started talking about a project in which she was working. It involved helping people with something I couldn’t figure out. She was so wrapped up in this that once again, I could not get her interested in changing into her night clothes and going to bed.

I needed to take my shower, and she came into the bathroom twice to get me to come to her and continue our conversation. I told her I would come as soon as I got out.

After my shower, I was still unable to interest her in getting ready for bed.

Around 8:45, I went to her  where she was seated on the love seat in the family room. I spoke to her as though our earlier conversation had never occurred. I was cheerful, took a seat beside her, and told her I was going to read a book I thought she would enjoy. She surprised me by sitting down to listen as I read The Velveteen Rabbit. It wasn’t long, however, before she picked up one of her photo books. I told her I would read that as soon as we finished TVR. She reluctantly accepted that.

I had just started reading again when she began to look for something else to amuse her. I got the robotic rabbit. She was interested for a while but then looked for another distraction. I gave up on reading and told her it was time for bed. I told her I was going to the bedroom and invited her to come with me. She said, “I’ll just stay here a while.” As I left the room, she was talking as though another person or group of people were with her. She talked constantly after I left. I went in twice to see if I could get her to come back to the bedroom. She was very calm and said she would just stay there.

Shortly after 10:00, I wasn’t sure how much longer she might stay up talking. I remembered having a partial prescription of Trazadone. She had taken it for several years to help her sleep. With her doctor’s approval, I discontinued that in the spring. I decided to give her half a tablet and went to bed. I set the alarm on my phone for 30 minutes. It went off at 11:00.

I went back to the family room. She was still talking. I told her it was late and asked if she would like to join me in the bedroom. She agreed, and we went to bed without any further complications.

She woke up around 10:00 yesterday morning and seemed fine until I was ready to get her up. She wasn’t ready. I told her I would come back later which I did at 10:45. She was in a good mood and got up with minimal difficulty.

It was still a little early for lunch, so I gave her some apple juice and a slice of cheese toast. She ate only half of it but drank two large glasses of juice. The sitter arrived while we were at the table. It was time for me to leave for Rotary. Kate didn’t seem bothered by the fact that I was leaving. I attributed that to her not knowing me. Neither was she pleased that Cindy had arrived.

When I returned, Cindy told me that Kate didn’t eat the sandwich I had left for her lunch. She just sat there for a long time without engaging in conversation though Cindy tried to get her to agree to go to the family room. After an hour, Kate agreed. Once in the family room, she wanted to rest and was still resting when I got home.

I was able to get her up for dinner at a nearby Mexican restaurant. As we left the restaurant, Kate was too frightened to step off the curb to get to the car. Twice, without success, I moved the car to get close to the curb so that it might be easier for her. After ten minutes, we walked back to the restaurant where I asked the owner if he could help me. I got in the car and drove the car close to the curb in front of the restaurant. I was definitely close. The front tire was partially up the curb. Then the restaurant owner and I worked together to help her into the car. That will probably be our last time at that restaurant unless I can get a board to serve as a portable ramp to carry with me.

Kate was tired when we got home and was in bed by 7:30 without our encountering a problem. That was a relief.

Earlier in the day, I sent a message to Kate’s doctor through the patient portal. I described the events of the past week and talked briefly to her nurse who has forwarded the message to the doc. I hope to hear from her today.