Update on The Velveteen Rabbit

It’s been a while since I’ve commented on my use of The Velveteen Rabbit to distract Kate when she is disturbed or bored. Regular readers of this blog will probably recognize that as one of the most reliable tools in my “Caregiver’s Toolbox.” I’m sorry to report that at this stage of her Alzheimer’s, some of my tools aren’t as reliable as they once were. Unfortunately, these include her photo books, our “tours” around the house, and The Velveteen Rabbit.

The good news is that TVR hasn’t lost all its charm. It continues to help me out and has done so twice in the past two weeks. The first occurrence happened when I thought she might be headed toward another experience with sundowning. The preceding occasions began with restlessness accompanied by a desire to go home.

Several times this occurred after she had been in her recliner for a couple of hours. In every instance, it followed a period during which Kate and her caregiver were seated close to each other but not interacting. Although all of our caregivers do a good job with the basic tasks involved in caring for Kate, they are very much like the average person with respect to communicating with her. I am very understanding about this. It really is difficult for them to establish a close personal relationship with her. When asked questions, she doesn’t understand or simply doesn’t answer. Thus, caregivers receive little reinforcement for their minimal efforts.

Even though I am understanding, the contrast between the relationship between Kate and her caregivers is dramatically different than the one Kate and I have. While we also have moments of silence after the caregivers leave each evening, the silence is punctuated by brief conversations and often expressions of our feelings for each other. I don’t expect caregivers to relate in this way, but I would like them to find their own “tools” to handle the situation.

I want to help them and decided to intervene next time I noticed the first signs of sundowning. When that happened, my first step was to kneel down beside her recliner and seek to comfort her. I spoke to her slowly and softly and explained that I wanted to help her. She wanted to get out of the recliner and go home. I told her I would be happy to do that. She began to feel less agitated, but I didn’t solve the problem. I started to pick up one of her photo books. Instead, I thought about The Velveteen Rabbit. I went to the bedroom where I keep it to read to her as a bedtime story. I brought it back to her and read it. As often happens, she was not immediately engaged. The more I read the more she listened. I can’t be sure if TVR made the difference. I do know that she enjoyed the book and didn’t show any further signs of sundowning.

A few days later, we had a similar experience. She and the caregiver were seated in the family room just a few feet from each other. Kate looked bored. She and the caregiver hadn’t been talking at all. I felt like Kate needed a boost. Once again, I picked up TVR and read it to her. She perked up rather quickly and gave her customary audible emotional responses to various passages. It was just the tonic I was looking for. At the end, I noticed that the caregiver was wiping away a few tears. She told me later she wasn’t familiar with the book and thought her daughter might like it.

Will it work the next time she has a problem? I don’t know. I haven’t found anything that always works. One thing is sure. The Velveteen Rabbit still has value, and I don’t intend to give it up anytime soon.

Caregiver Guilt

I’ve often said that as Kate’s caregiver, I have two goals: to keep her happy and to keep her safe. On the whole, I believe I’ve done well on both of these. That doesn’t mean, however, that I haven’t made mistakes, but I do try to learn from them. I had a lesson on that the other day.

Kate was tired that morning. She had been awake early the previous day and didn’t rest much during the afternoon. I woke her about 11:30. I assisted the caregiver getting her ready for the day. She took her meds with some yogurt. Then we let her rest a while. We are getting her out of bed frequently now though not every day.

That day I thought it would be especially nice to have her up and give her breakfast at the table rather than in the bed. A couple in the neighborhood was dropping by to look at our house that we have listed with a realtor before our move to a continuing care retirement community in April. Getting her out of bed is not a pleasant experience for Kate, but recently she has accepted it more easily. It was different that day. She protested vigorously as we got her ready to hoist her in the lift from her bed to the wheelchair.

I started to suggest to the caregiver that we just leave her in bed, but she is usually all right once she gets up. Now I wish I had followed my initial instinct and let her rest. Instead, we got her into the wheelchair while she screamed. Although I thought the worst would be behind us, she had a panic attack and I felt guilty about forcing her to get up.

She didn’t calm down for at least thirty minutes, but then she was fine. I was relieved but still felt guilty. I do think it is important to get her up as much as we can. If we don’t, she may continue to be bedridden. She is quite strong physically, and I would like to see her walk again, but in the future, I am going to be more careful in assessing her willingness or lack of willingness to get up. I don’t want to exacerbate the fear that she already has. It was a bitter lesson for me.

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.

Recovering and Declining At The Same Time

Kate’s recovery from her experience with COVID and her hospitalization is progressing. We are working our way into getting her out of bed almost every day now. The process doesn’t go as smoothly as I would like, but she is getting more accepting of our (the caregivers’ and mine) role in helping with her physical and mobility needs. That makes life a little easier for her and for us.

Sometimes it takes as long as an hour or more for her to reclaim her cheerful self after we get her up. The other day someone said, “At least they forget quickly.” That may be so if we are talking about her memory for specific incidents that may have annoyed (angered) her. On the other hand, I believe her senses can hold a feeling for a while.

Now that she is recovering from COVID, I notice differences that reflect her decline from Alzheimer’s. Some of that started as long as 6-12 months before getting the virus. One of those I haven’t mentioned involves her salivation. Four years ago, she stopped swallowing her saliva during most of her waking hours. That required my keeping paper towels or napkins in the car all the time. All our servers were sensitive to this and provided extra napkins for her. It declined a little after a 2-3 years, but now appears to have stopped completely. I don’t have a good explanation for it, but it correlates with other things that have changed.

Some of that involves her food preferences. She has never liked onions, but she eats them now so long as they are cooked. She doesn’t realize she is eating them. Similarly, she never liked coconut. Now one of her favorite soups is one we have gotten at a Thai restaurant. It contains a broth made from coconut milk. During the pandemic, we have used a caterer for meals once a week on Friday night. She sometimes includes a homemade version of a Mounds chocolate bar. Kate loves them.

Other changes make me feel sad. For years she has taken great pleasure in the beauty of trees, plants and flowers. Now she rarely comments on them when she sees them. Even when I pick up a plant and show it to her, it doesn’t invoke the same excitement it used to.

More troubling is the fact that she seems to be losing her interest in her photo books and other family pictures even those of her mother. She still maintains a strong feeling for her mother when she talks about her, but it has been weeks since she has expressed much interest in photos of her. Yesterday was a notable exception. We spent about thirty minutes looking at the “Big Sister” album her brother Ken made for her almost three years ago. She enjoyed every minute until she felt tired. If this decreasing interest in her photo books continues it will remove one of the most valuable “tools” in my “Caregivers Toolbox.” I have used them many times to entertain her or to shift her mood.

On a more positive note, it’s been a long time since she has awakened in the morning and felt afraid. I can’t believe that this is a because she wakes up clear-headed and knows where she is, who she is, etc. She just seems not to be bothered by it the way she used to.

The highlight of our day comes after the caregivers leave around 7:00. I usually get in bed with her and watch some of the evening news. While I take my shower, I turn on music videos for her. After showering, I return to bed with her, and we watch YouTube together and chat. She is perfectly at ease, and I treasure these moments.