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The Role of Love in Caregiving

In my previous post, I used an experience in a support group as a springboard to talk about the value of partnering with the person receiving care. In that same group, the facilitator asked us how often we tell our care receivers we love them. Although time ran out before we could fully address the question, I thought it also plays an important role in caregiving, especially in a strong partnership with a family member.

By itself, partnering can be interpreted as a mechanical agreement to work together without any special emotional attachment. Caregiving, for example, can involve many skills that can be taught or learned through previous experiences. I’ve observed that with all of Kate’s caregivers past and present. They’ve completed training to receive their professional credentials and almost all of them have had more than ten years of work experience. Their knowledge of how to perform many aspects of caregiving far exceeds what I know, but there is much more to caregiving than knowing how to perform the basic skills. The best caregivers are able to develop an emotional connection with those receiving their care.

Despite that, I think that the expression of love is something most likely to be found among close relatives. I am thinking especially of spouses and children of people living with dementia. Therein lies a valuable asset that paid caregivers may not normally possess or come by easily. I should be quick to say that even close family members sometimes find that love can weaken with the challenges they face.

I have to admit that I am heavily influenced by my personal experience with Kate who has the very best of care from her medical professionals and paid caregivers; however, I think they don’t communicate “I love you,” “You matter to me,” and “You’re someone special.” Those expressions of love come from me, and I believe they are very important in reinforcing the strength of our relationship as well as Kate’s sense of self-worth.

This should not be a surprising observation. After all, when two people fall in love, each recognizes a sense of love that is different than the love we have for other people. I’m not suggesting that love cannot be equally strong for a parent, sibling, or other family member though I believe the intensity of this emotion is generally different than that of the love for a spouse.

I suspect there are family caregivers who feel at a loss to provide care for their loved ones, but so long as love lasts, they possess an asset that few paid professionals can achieve. Coupling that with the skills of professionals makes for a winning combination.

Let me close by returning to the question asked by our support group’s facilitator: How often do you tell your spouse you love them? My answer is quite often. I begin each day by telling Kate how glad I am to see her. When she is smiling, I tell her how much I like her smile and that she has her mother’s smile. I bend my head close to hers and look straight in her eyes and tell her I love her and that she is the most special person to me in the whole world. I don’t bombard her with all this in “one shot,” but I do so in a relatively short period of time.

At various points during the day, I remind her of my love for her. When I turn out the lights at night, I move close to her in bed and thank her for a nice day. Then I say, “Every day is a special day when I am with you. I love you.” I can’t say that I was anywhere near as expressive of my love for her before Alzheimer’s, but, especially at this point, I believe it is important for her to know that she is loved. She is unlikely to pick that up from anyone else except from our children whose opportunities are limited by the fact that they live out of state.

Until this very moment, I hadn’t thought about my “Caregiver’s Toolbox,” something I’ve mentioned in other posts, but it seems to me that expressions of love from one family member to another is, perhaps, the most valuable tool of all. I know it’s the one I use most. It pays great dividends.

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Partnering

Last week I attended (virtually) a local support group. A new person from Los Angeles also joined us virtually. He’s caring for his father who doesn’t want to take a shower and wondered if any of us had encountered a similar experience. He was eager for any ideas that might help him solve his problem. The first thing I thought of was that caring for a parent presents a different and, perhaps, a greater challenge than when caring for a spouse.

It made me think about how important partnering with Kate had been in our relationship. The first two weeks after her diagnosis we talked a lot about how we wanted to respond. I don’t recall that we mentioned the topic of partnering. We simply tried to lay out a general way that, together, “We” could approach “Living with Alzheimer’s.”

We were already partners and were sensitive to our shared desire to make the most of whatever time remained to us. As time passed, it was clear that her Alzheimer’s made it impossible for her to carry out any plans. It was up to me as her caregiver to do that; however, I’ve always been mindful to treat her as a full partner. That has never been truer than during the six months since her return from the hospital.

On a daily basis, her paid caregivers and I have to do things that she doesn’t like for us to do. The role I play in this process is to put her at ease and comfort her. I often remind her that we need to help the caregiver. I explain that the best thing she can do is to remain calm and let the caregiver do her work. The caregiver and I both compliment and thank her for her cooperation. We do these things every day and every time. I am happy to report that she has made gradual progress. Even in the past week or so, she has been more cooperative than she has been for months.

Is this because she considers herself a partner in our effort to care for her? I can’t imagine that she does. I do believe that she is growing more accustomed to being moved about, changed, and lifted in and out of bed, her recliner, and her wheelchair, but I don’t believe that completely explains the difference. I think the way the caregivers and I have approached her has also played an important role in reducing her fear or irritation.

Let’s return to the shower issue of our friend in Los Angeles. His father is a retired naval officer. His role as a parent and his career have involved being in charge. It can be hard to give that up to one’s child even though they have reached full maturity and have children of their own. I imagine it is especially difficult for this man’s father.

This man wanted an idea he could use to get his father to shower. Developing a partner relationship requires time. You don’t just say let’s be partners and discover the other person becomes cooperative. I’m not suggesting that establishing a strong partnership with his father is unrealistic. I’m saying it is unlikely to happen overnight. It has to be cultivated. The father is still reasonably early in his dementia. Working out a partnership with his father could pay great dividends in the future. That is where I think caring for a spouse can be an advantage over caring for a parent. I emphasize “can be.” There are lots of marriages that are not ideal partnerships. There are also good marriages in which one person is more dominant than the other. Fortunately, Kate and I had a good working partnership before her diagnosis and have worked to continue that since then. It’s another of the advantages we have had while “Living with Alzheimer’s.”

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An Important Breakthrough

Kate has not been outside since two weeks before Thanksgiving. There have been several exceptions. Four or five times we spent an hour or so on the patio before our move. Another was the ride in a wheelchair van when we moved, and since the move, four times on our balcony. That ended yesterday when her caregiver and I took her for a walk in her wheelchair around our building and the one adjacent to ours.

It started when I mentioned to the caregiver that I would like to arrange for Kate to have her hair done. I’ve talked with her hair dresser and the person who manages the salon on the grounds but have been concerned about how Kate might react. Yesterday, her caregiver suggested that we gradually take her outside the apartment and around the building. I agreed.

It wasn’t long before I saw that the caregiver was getting Kate out of bed and assumed that as usual she was either going to bring her to the living room or to our balcony overlooking a courtyard located between the two long arms of our U-shaped building. When I said something about going to the balcony, the caregiver said she wanted to take her outside our apartment. I was pleased with her desire and offered to go with them.

Kate was very quiet and didn’t protest as we walked into the hallway toward the elevator. We were encouraged but wondered how she would react to the elevator. As we approached, our next-door neighbor got off and walked toward us to her apartment. This was the first time any of the residents had seen Kate, and I took the opportunity to introduce her. I told Kate her name and explained that she lived next door. Kate didn’t say a word.

Then we proceeded to the elevator, backing her in because that seems to be less frightening for Kate. We entered without Kate’s protesting. The next step was the closing of the door and the motion of the elevator’s going down. Kate was very calm.

Once downstairs, we ran into the “Move-in coordinator.” She is the person we newcomers look to first when we have a question or problem. We walked over to her, and I introduced Kate to her. As with the previous introduction, Kate didn’t say a word, but she didn’t appear to be disturbed in any way.

From there, we went outside to the courtyard and walked around the outer walkway. Kate expressed neither concern nor pleasure. Her caregiver and I were encouraged that she seemed comfortable. I commented on the assisted living building that is located at the open end of our building. The caregiver offered to give us a tour.

As we entered, I took note of the fact that one of the first things I saw was the office of the geriatric physician whom I have known since the late 90s. A few months ago, Kate’s current doctor had mentioned that it might be good for Kate to transfer to this practice. I definitely plan to do this but also like her current doctor and haven’t been in a hurry to make the change. I knew it would be convenient, but seeing just how close it is to our apartment heightened my interest. I plan to bring up the subject of a change at our next appointment with the current doctor.

After walking through the assisted living facility, we walked back to our building and took a seat at an outdoor table at the soup, salad, and sandwich bar on the ground floor of our building. We relaxed about thirty minutes. Kate was quiet but did say that she liked being outside when I asked.

A few minutes later, she asked, “When are we going back up?” You might not think there is anything remarkable about this, but her caregiver and I did. She never seems to say anything that conveys awareness of where she is or the location’s relationship to some other place. The notable exception would be the many times she has said, “I want to go home.” (By the way, I’m not sure she has said that at all since we moved four weeks ago today.) The fact that she used the word “up” was striking to us. Was this just a random use of the word, or did she realize that we were downstairs? I’m inclined to believe the latter. If I am right, it shows a greater sense of awareness than I thought possible at this point in her Alzheimer’s.

It was just after 4:30, and I usually order dinner around 5:00, so we made our way back to the apartment and without any complications. Her caregiver and I hope that this is just a first of many such experiences in the days ahead. Kate may not have expressed any great enthusiasm, but her caregiver and I did. It was a refreshing outing for both of us.

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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.

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“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.

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Celebrating Happy Moments in Late-Stage Alzheimer’s

Although Kate’s recovery is much slower than I would like, I rejoice in the Happy Moments we continue to experience. As I’ve said in other posts, our evenings are very special. That’s not to say that they are the only special moments of the day, but they are the most consistent. It’s nice to have a day that ends well.

One of our caregivers was surprised when I told her about that. She wondered what we could be doing that would be so special. I’m sure she asked because Kate often seems so passive when they are here. In addition, when she is talkative, most of the caregivers don’t enter into the conversation. Much of what she says is rooted in delusions. That may be why they tend to ignore her. They don’t know her well, and it isn’t easy for them to live in her world by participating in her delusions. It’s much easier for me to do that.

I believe our good evenings occur because she senses that when it is just the two of us, she can relax. I won’t do anything to disturb her. She almost always recognizes me as someone familiar. That contrasts with her caregivers. She has 5-7 of them and all but one is new since Thanksgiving. She hasn’t developed a strong relationship with them. Apart from the length of time we have been together compared to her relationship with the caregivers, I am also more careful to give her my attention. My impression is that she may feel more alone when she is with her caregivers.

Night before last was an especially good night. We were both propped up in the bed watching a 1993 Barbra Streisand concert. She was in a good mood and enjoyed the concert more than most music videos. We talked about the concert and especially Streisand. It’s important to note that it wasn’t a time when her Alzheimer’s symptoms disappeared. Throughout the concert she repeatedly asked Streisand’s name, but she liked what she saw and heard. She was also very loving. She held my hand and ran her hand across my arm, and we expressed our love for each other. When the concert was over, it was time to call it a night. Before doing so, Kate asked if I could take a picture of us. I take that as another sign that she had a good time.

It’s not unusual for her to be both puzzled and fascinated about her top sheet and bed spread. She often asks me what they are. I explain that they are something to keep her warm during the night. She has another purpose for them. They’ve become a convenient “Fidget Pillow.” For those who are unfamiliar with fidget pillows, they are often pillows with a variety of buttons, ribbons, or other objects. Many people with dementia find them fun to fidget with. They come in a number of other forms than just pillows. I bought one for Kate a few months ago, but she’s never taken to it.

Her top sheet or bedspread has become her personal substitute. She uses two hands about 18 inches apart to pick up either the sheet or bedspread. While holding it, she pulls her hands together to make a “shape.” She continues to make different shapes and asks my help and approval of the work she is doing. We did this together for almost thirty minutes last night. She enjoyed it and admired her own “works of art” while I enjoyed being part of her fun. This is something else in which her caregivers are not likely to be a participant, and I understand how they might think this is just a silly game. For me, however, it’s rewarding to see her enjoy simple things like this. After all, it’s difficult or impossible for her to engage in many of the same things that appeal to us. As they say, “It’s important to live in her world.”

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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.

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Why Are Posts Becoming Less Frequent?

From time to time, readers ask if everything is all right. This occurs when the time between posts is longer than usual. The reasons for these occurrences has changed over time but always reflects what is happening in my life. The other day I looked back on the number of posts for each year since Kate’s diagnosis in 2011. It reveals an interesting pattern. (See the figures below.)

2011                62

2012                64

2013                64

2014                82

2015              123

2016              133

2017              236

2018              549

2019              397

2020              167

During the first four years, our lives remained pretty much the way they had been before the diagnosis. Kate’s symptoms remained much the same as well. There was simply less to write about than in the next four years. Since the end of 2016, her changes were more dramatic. There was plenty to write about, but I was able to keep up rather well. In 2018, I averaged 1.5 posts a day. Since then, my posts have been less frequent. Last year, my average was .46 posts a day, a 58% drop from 2019 and a 70% drop from 2018. So, what’s going on?

The answer involves two different but interrelated factors. First, Kate’s changes have required more of my attention. That made it more difficult for me to devote time and attention to writing. Second, the stress of caregiving increased proportionately, and I felt I had to put more effort into its reduction.

One of the first things I did was to relax my self-imposed obligation to write a new post by 9:00 at least every other morning. I decided that I had a wealth of descriptive information about us and could afford to post less frequently. That has proven to help with the stress but not eliminate it. Now, it relates more to my failure to write more often. I feel that way because there is so much that I would like to document. The truth is that it is so much that I can’t even remember the things I want to record. Previously, I had jotted down notes during the day to help me, but I have less time for that now.

Apart from my responsibilities for Kate, I have remained active in several other ways. These have been mostly therapeutic for me, but also have an element of commitment that can be stressful at times. One of those is emailing with two longtime friends from college. We are in daily contact, and often I don’t have the time to write. I have allowed myself to relax on my own participation. At the moment, I think I have reached a balance that involves minimal stress and maximum therapeutic value.

Of course, everyone is subject to other stresses that are not directly related to our own choosing. There are times when these present a problem. That is happening right now, and I will deal with that in another post. Right now, I think I will take a break and read the daily news. I’ll review what I have written and post it tomorrow.

Well, tomorrow is here. I’m going to upload this post right now.

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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.

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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.