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Back to a Typical Day

Kate’s first experience with incessant talkativeness occurred a week ago today. It was one of three days of extreme talking. Each day was followed by a day of rest. If the pattern had persisted, yesterday would have been a day of talking, but it wasn’t. Her caregiver and I were happy.

She awoke about 11:15 in line with what is normal for her. She was in a good mood although a little sleepy, again, something normal. I took care of her morning meds and gave her some juice and a snack before the caregiver arrived. Then, I left for Rotary.

When I returned, she had had lunch and was relaxed in her recliner. She was quite calm and not talking. When I approached her, she had a smile on her face. I told her I was glad to see her, and she said the same about seeing me.

They were giving flu shots that afternoon, and I decided to take advantage of the opportunity for both of us to be vaccinated. First, I went to see what it looked like and discovered there was about a 30-minute wait. I completed forms for both of us. Then I went back to tell the caregiver it might be better if they remained in the apartment until nearer the time for us to be called.

When I got back downstairs, they had moved more quickly than expected. I rushed back to the apartment and brought Kate and the caregiver with me. We were called in right away but had another 10-minute wait before someone came to give the shots. I didn’t think Kate would have any problems, but I wasn’t sure. I was relieved that it went smoothly.

We returned to the apartment for another thirty minutes before the dining room opened at 4:30. We have been going early and sitting in a corner of a room adjoining the main dining room. We’ve eaten in more public areas of the dining room in the past, but I prefer the more private area in case Kate should say or do something that might be disturbing to others. That hasn’t happened often, but her loud voice gets attention. As usual, she enjoyed every bite of her food and was in a pleasant mood the entire time.

After dinner, we spent almost an hour on the balcony. While we were there, Kate began talking. The caregiver and I both wondered if this might not be the start of something we couldn’t stop. Once in bed, however, she began to relax. That is not unusual. She has often rested an hour or more after getting into bed.

While she rested, I took a shower. Kate was awake when I finished, and I got in the bed beside her. For more than an hour, we lay there talking. We talked mostly about our relationship and how we felt about each other. It was another very special moment at the end of a day that had gone well and is more typical of our days than those of the past week.

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A Day of Rest

It’s too soon to say Kate has established a new pattern of behavior, but there was a bit of consistency the past few days. Tuesday, Thursday, and Saturday she was very talkative for significant portions of the day. Tuesday was the most extreme. She talked almost non-stop from 8:30 in the morning until about 9:00 when I gave her a tablet of melatonin. That worked, but I gave her a sedative (Seroquel) on Thursday and Saturday nights.

It was no surprise that each of the days that followed her talkativeness and agitation she was very tired. She slept late and rested most of the afternoon as well. Yesterday was a good day of recovery. She was tired most of the day until dinner time. By then, she was quite rested, and we went to the dining room for dinner.

After the caregiver left, we relaxed in bed. I watched part of the Buccaneers/Patriots game with the sound muted and music playing for Kate. It was a welcome moment for the two of us after the past few days. I hope we find our way back to something a bit more normal in the upcoming week.

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More on Kate’s Talkativeness

For the third time in the past five days, Kate was unusually talkative yesterday. I’ve welcomed some of that. That has been especially true during the morning when she has waked up much earlier than usual. I’ve enjoyed spending that time with her. The bulk of her conversation has involved delusions and hallucinations, but she has been happy and seemed at ease. That was true during the entire day. During the afternoon, we went to the café for ice cream. After Kate had finished eating, we went out on the deck beside the café. It is shady in the afternoon, and the temperature was so pleasant that we spent an hour there.

As on previous days this week, the pace of her talking began to pick up. She talked constantly while we were on the deck. We went straight to the dining room for dinner. I was somewhat uneasy because Kate was talking so much and can be loud at times, but the meal captured her attention. She ate well and seemed relaxed.

Upon our return to the apartment, we got her ready for bed. She was very cooperative, something that has become the norm in recent weeks. She began to talk a little more after the caregiver left, but she was relatively calm. Over the course of the next hour and a half, the pace of her talking picked up. At 9:00, it was obvious that she wasn’t going to be ready for bed anytime soon. I mentioned that I was getting tired and would soon get ready for bed. I don’t remember exactly what she said, but she conveyed that she wasn’t ready at all.

I prefer not to use Seroquel unless I have to, so I got her a melatonin. I muted the sound of the TV and turned on some soft music she likes. Forty minutes later, she showed no signs of sleepiness. At 10:00, I crushed a tablet of Seroquel and gave it to her in a spoonful of yogurt. I’ve only used Seroquel four or five times, and it usually takes effect within twenty minutes. An hour later, she was still going strong. I gave her another Seroquel and turned on a YouTube video of Andre Rieu and his orchestra accompanied by a very large contingent (at least 50) of brass instruments playing a very soft rendition of “Nearer My God to Thee.” I hummed along with the music. For a few moments, Kate eased up on her talking. She picked right up when the music ended. I switched to a recording of “Edelweiss” and hummed along with that. She started humming too. She also began to relax. I turned out the lights, and she was asleep by 11:30, almost two hours later than usual.

As I prepare to upload this post, it is close to 10:00 a.m. the next morning. She slept through the night and has shown no signs of waking. If she follows the pattern of the past few days, she will probably be tired and will catch up on her rest today. I’m still not ready to make any predictions. What will be will be.

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Follow-up on the Two Preceding Posts

We had no problem with Kate’s incessant talking yesterday. She was quite tired. In fact, I wanted to take her for ice cream during the afternoon, but she preferred resting. She perked up a little at dinner but never displayed any of the agitation we observed on Tuesday and Thursday.

We had a very peaceful evening together watching music videos on YouTube. It was like the mid-week agitation had never occurred. No melatonin or Seroquel was needed, and I hope we won’t need them again anytime soon. I vote for “Never.”

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Addendum to Previous Post: Time Did Tell

In yesterday’s post, I talked about my looking for patterns in Kate’s behavior. I was motivated to talk about that because she had an unusually talkative day on Tuesday. She was agitated, and I resorted to melatonin to get her to sleep that night. Predictably, she was very tired the next day. Yesterday started out like a somewhat typical day except for the fact that she was awake at 8:30, several hours earlier than normal. In my final sentence, I suggested that “time will tell” if Tuesday’s talkativeness/agitation was a unique happening or the beginning of another pattern.

As it turned out, yesterday was not quite like Tuesday; however, around 3:00 p.m. she became talkative but did not appear particularly agitated. At 3:30, I left for a residents’ meeting. When I returned at 4:30, Kate was talking with agitation similar to that on Tuesday. The caregiver and I decided not to go to the dining room. I brought our dinner back to our apartment. She began to calm down a bit while she was eating.

I thought we might be home free, but she started talking again as we got her ready for bed and continued talking after the caregiver left. Before 9:00, she seemed somewhat agitated. As I had done the other night, I gave her a melatonin. It had no effect. Just before 10:00, I gave her ½ of a 25mg tablet of Seroquel (not crushed) in a spoonful of yogurt. She swallowed the yogurt and spit out the pill. (These tablets are very small, so small that I was unsure I would be able to split them when her doctor first prescribed them. I thought she might swallow it uncrushed.) Then I crushed a whole tablet and mixed it in yogurt. She took it without a problem and was asleep within twenty minutes, and, as usual, she slept through the night and is still sleeping at 9:25.

What’s in store for today? I’m not predicting. I’m just going to wait and see. She should be rested after resting all day Wednesday and sleeping well that night and last night. The focus of my attention will not be on the time she wakes, but her incessant talking during the day and especially at bedtime. By itself, talking would not be an issue. What concerns me is the agitation that makes the talking so out of control.

During the past year, Kate’s behavior has seemed like she might be experiencing sundowning. I haven’t been ready to say that is it because her symptoms haven’t always appeared in the late afternoon or early evening. One of the two occasions this week began much earlier in the day. Nevertheless, I would say that her behavior appears to match what I have interpreted as symptoms of sundowning. If so, I will probably see this again. One thing I know. Tuesday’s talkativeness was not unique. Whether or not this becomes a pattern still remains to be seen. Once again, time will tell.

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Always Looking for Patterns

As a caregiver, I’m always looking for patterns in Kate’s behavior; however, I tend to talk more about variations. I suspect that is true for most of us. It’s the unusual things that stand out, not what is normal every day. There are exceptions, however. The first time something new occurs, I wonder if this is the beginning of a new “pattern.” Often, it is not, but that doesn’t keep me from wondering the next time I see something new.

Kate’s daily pattern has changed many times during the course of her Alzheimer’s. I remember the early days when she worked in the yard 6-8 hours a day. Later, she working jigsaw puzzles on her iPad became her primary activity. She did that, too, 6-8 hours a day. That ended with the pandemic. It was also the end of her self-initiated activity. I had to spend more time keeping her occupied. Despite that, she began to rest on and off during the day.

She’s gone through several changes in her sleep patterns. Most of the time since she was hospitalized for COVID, she has slept until 11:00 or noon almost every day. There were always exceptions, but I found I could pretty well count on her not being awake before 11:00. That gave me time to relax and take care of routine household or personal responsibilities.

More recently, perhaps the last couple of months, she’s been alternating in a somewhat unpredictable way between waking much earlier, sometimes before 7:00, and sleeping until 11:00 or 12:00. I haven’t tried to keep a record of the time she wakes and how she is behaving, but it appears that she has one or two days when she wakes early and then is worn out the next day. Sometimes when she wakes early she is talkative. On a number of those occasions, she’s been talkative a good bit of the day.

The past two days have been a good example. On Tuesday, she was awake around 8:30, just before I took my morning walk. I gave her some juice and her morning meds. She was somewhat talkative for that time of day and in a good humor. I expected that she would go back to sleep while I walked, but when I finished, she was wide awake and even more talkative. That doesn’t mean someone was actually there to talk with her, but she doesn’t talk as though she is talking to herself but somebody she imagines to be there.

I decided to join her in bed and talked with her. As usual, I couldn’t always understand what she was talking about. Some of her words were unrecognizable even to her. That is something new in the last few days and occurred a number of times that day. She would say something like “She’ll want to go to the ‘boober.’” Then she would say, “’Boober’? What’s that?” Each time it was always a different word.

I spent most of the morning with her but checked on her periodically when I was out of the room taking care of other things like finishing up a few details on our 2020 income tax for which I had taken an extension. She never stopped talking.

After the caregiver arrived around noon, I joined a couple for lunch in the café downstairs. When I returned almost two hours later, Kate was still talking. She was also fiddling with her clothes, running along creases in her pants as well as pulling her shirt up as if she planned to take it off, something she was unable to do. This was something I had noticed when I was with her that morning. She was somewhat agitated but not disturbed, just talkative and fidgety.

It was about the time that we normally go out for ice cream, but the caregiver and I agreed that it seemed better to remain at home. She gradually seemed less agitated but continued to talk. When it was time for dinner, we decided not to go to the main dining room. I brought our meals to the apartment.

After dinner, we sat on the balcony for a while before getting her ready for bed. Kate talked the whole time and continued to talk after we put her in bed. Shortly after 9:00, she was still talking. I gave her a 5mg tablet of melatonin and turned out the light. Twenty to twenty-five minutes later, she was asleep. It had been quite a day, certainly not her normal pattern.

I wasn’t surprised that she was very tired yesterday. She was still asleep when the caregiver arrived at noon. Adrienne let her sleep another hour or so, before getting her up for the day. She fixed Kate some lunch. Kate ate it all but was very quiet. She rested until it was time for dinner.

We ate in the main dining room. When we returned to the apartment, we spent a little time on the balcony before giving Kate a shower and putting her to bed. It wasn’t long before she was asleep.

She slept until 8:30 this morning. After my walk, I spent the morning with her. She was cheerful. We had a good time together. It looks like a more typical day, but after the events of the past couple of days, I can’t help wondering if we are in the early stage of a new pattern. Time will tell.

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Music Is Still One of the Best Tools in My “Caregiver’s Toolbox”

Periodically, I’ve talked about my “Caregiver’s Toolbox” and the fact that caring for Kate requires a lot of different tools to meet the variety of problems we encounter. I’ve also noted that some of these tools no longer work as well as they did in the past. In particular, photo albums don’t have the same appeal they did for years. One of those I can still count on much of the time is music. The pleasure of music continues to lift Kate’s spirits and provide many hours of enjoyment for both of us.

Since her diagnosis 10½ years ago, I’ve called on music to address specific problems. The first time occurred in the early days when I rushed her as we were getting ready to attend a concert by our local symphony orchestra. She had a panic attack and hadn’t fully recovered when we left the house. As soon as we were in the car, I turned on the second movement of the Brahms Violin Concerto. It’s a very peaceful adagio that runs just over 10 minutes. Kate was calm before it ended. That experience led me to create a short playlist of the second movements of the Brahms, Tchaikovsky, and Mendelssohn violin concertos for use on other occasions.

Several years ago, Kate was uneasy after awaking from a short nap on the sofa in our family room. I was seated across from her and went over to see what I could do to help. After an unsuccessful attempt to calm her, I started to sing a children’s song, the name of which I no longer remember. That seemed to bring a brief smile to her face, but my memory of songs escaped me. I took my phone out of my pocket and searched for albums of children’s songs on Google. I found one with 100 songs and downloaded them to my phone. For the next 30-40 minutes, we sang songs like “Polly Wolly Doodle,” “Old McDonald Had a Farm,” “The Bear Went Over the Mountain,” “If You’re Happy and You Know It,” and many others. The crisis was over in no time.

As I was about to go to sleep earlier this week, Kate had a delusion like many others she has had in the past. She was worried about someone she believed was coming to see us. She couldn’t stop talking about it. I tried to reassure her by telling her I would help her and that I had everything worked out, but that didn’t do the trick. I leaned upon music to help me. Lying beside her with my head on her shoulder, I began to softly sing “Edelweiss.” Then I hummed it again. I followed that by humming “Nearer My God to Thee.” My next step was to start a search for both of these songs to play on my audio system. Before I could do that, she had stopped talking. She was calm and drifted off to sleep. Music had come to the rescue once more.

There are many other examples of the ways in which music has enriched our lives. I don’t know how long this will last, but I’m optimistic that it will be important to us the rest of our lives.

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A Rough Start, But a Nice Day

Yesterday, as I was preparing for my morning walk (inside our apartment), I noticed that Kate was awake. She looked disturbed. It was easy to tell that it was one of those moments when she didn’t know where she was, who she was, who I was, etc. Her mind was an apparent blank. Although she didn’t recognize me, she didn’t appear to be afraid of me, only frightened by not knowing anything. This is something that used to occur occasionally before the pandemic. It seems to be making a unfortunate comeback.

I asked if she could tell me what was wrong. She said, “I don’t know.” I told her she had been sick and that sometimes caused memory problems. She said, “What’s my name?” I told her and then gave her my name and relationship along my usual recitation of our lives from college to having children. Sometimes she comes out of this fog rather quickly, but she didn’t this time. I turned on some relaxing music. Then I got her morning meds and gave it to her with some yogurt. I also made her a smoothie with cranberry juice, blueberries, and prunes, my latest effort to prevent constipation. I followed that with mandarin oranges. Her anxiety lessened, but she was still not cheerful. She looked a little tired, so I let her rest while I took my walk.

When I finished, she was very cheerful and talking to “someone.” That was the beginning of a day of talking and delusions that was only interrupted by an appointment with a podiatrist just before at 1:45. Knowing that the caregiver would have less time than usual to get her ready, I decided to fix her lunch. That was a good thing because Adrienne didn’t have to rush her while getting her dressed.

She remained in a good mood, but Adrienne and I were both a bit apprehensive about how she would respond to having her toenails cut. It had been too long, and Kate had protested vehemently the last time we tried. For that reason, I gave her half a tablet of Seroquel 25 mg. Normally, it takes effect with 15-20 minutes, but we couldn’t tell that it worked at all.

When we told Kate we were going out, she didn’t want to go. With a little coaxing, she agreed; however, her protest about leaving and the fact that the sedative didn’t appear to have worked added to my anxiety. Fortunately, the podiatrist’s “office” is only a short walk down the hallway. This is another benefit of moving from our home. We won’t trim her toenails again.

The podiatrist works primarily with seniors and visits a lot of local senior facilities in our area. Thus, she is experienced with the challenges she can face. Kate was quite comfortable with her. Her only protests came when the doctor lifted her feet to put them on a foot stool. She also screamed a few times during the trimming process, but she didn’t put up a fight.

After this successful experience, it seemed natural to stop for ice cream at the café we passed on our way to see the doctor. While Kate was enjoying the treat, two different people we have known from our church stopped at our table. We talked for about 30 minutes. When they left, we asked Kate if she were ready to go “home.” She said she wasn’t. We stayed another 30 minutes. During that time we asked several times if she were ready. Finally, we decided it was time and left. She didn’t protest at all. I’m glad she finds the café a relaxing place to spend some time. Adrienne and I feel the same way. It’s just nice to get out of the apartment.

We had more than an hour before dinner, so we spent that time on the balcony of our apartment. It was especially nice out as the temperature was much lower than usual.

Kate’s talkativeness had subsided until we got home. She began to talk again and didn’t stop until Adrienne left about 7:45. She even talked between bites at dinner. Once in bed, however, she relaxed and slept for about an hour. We watched a Peter, Paul and Mary concert on YouTube and then retired for the night. She was tired after a full day and was asleep in no time.

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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.

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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.