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The Perfect Gift

Fifty-eight years ago today, Kate and I tied the knot. We vowed “to have and to hold from this day forward, for better, for worse, . . . to love and to cherish till death do us part.” Like most couples, I don’t think we fully appreciated what that meant. We do now and recognize that our lives have been richer because we found each other.

It’s a day to celebrate although I don’t know what lies ahead. It’s been more than five years since she remembered our anniversary, but I remember, and we celebrate each one. We’ve never put much effort into giving gifts to each other. Our emphasis has been on spending time together. For many years, we celebrated with a trip to Charleston, South Carolina, during their annual Spoleto Festival. Our grandest celebration was for our fiftieth, a week with our children and grandchildren in the Grand Tetons of Wyoming.

During the past few years, we’ve gone out to eat. This year we are in our new home, and she is in bed about twenty hours of the day. Since our move, I’ve been ordering a carry-out meal from the dining room each night. That’s what I’ll do this evening.

I know that some of you may think this is sad. In some ways you are right, but, overall, we have much to celebrate. We still enjoy being together, and I plan to reflect on many of our memories to remind Kate of them. While I said we haven’t generally exchanged gifts, I made one for her this year, a 95-page photo book that includes photos from the “Happy Moments” we have shared.

And what will be Kate’s gift to me? You might say, “Nothing,” but that wouldn’t be true. It will be the same one she gives to me almost every day, her own expression of love. That is something she can’t plan. That’s impossible with Alzheimer’s, and there’s no way I can be assured that she will respond that way today. That won’t matter because yesterday she gave me the very best gift of all. She was happy all day long. It was her best day since before Thanksgiving six months ago when she came home from the hospital after a bout with COVID.

She usually sleeps until noon or close to it, but she was awake before 8:00 and very cheerful. After her morning meds, I gave her a serving of mandarin oranges, something she has always liked. Expecting that she would go back to sleep, I turned on some soothing music. She was still awake at 10:15. Normally, her first meal of the day would be served by the caregiver after she arrives at noon. I decided she needed something to eat and fixed her some scrambled eggs.

After that, I sat up in bed with her, and we looked through her “Big Sister” album, a photo book that her brother Ken made for her three years ago. She can’t follow the photos, but she does respond to my commentary. It was a special moment for us because she hasn’t responded well to any of her photo books in months. We were both happy.

When the caregiver arrived, I left for lunch at Andriana’s, our regular Sunday lunch place for several years. I’ve been going by myself during the past six months. It’s a treat that I look forward to each week.

Kate was in her recliner when I got home. The caregiver told me that she had been easy to handle changing her, getting her dressed, and out of bed. She was still cheerful, but relaxed, and enjoying the music I put on before going. It was a great afternoon to be outside. The temperature was in the low-70s, and we went out on the balcony where we remained until time for an early dinner. Getting her out of the recliner and into her wheelchair is not something Kate likes, but she handled it as though it was something she enjoyed.

I know the dining room didn’t plan it for our anniversary, but they had 8-ounce filets for dinner. We enjoyed every bite. When it was time to get ready for bed, she didn’t protest when we lifted her out of her wheelchair and into the bed. Even more surprisingly, she didn’t protest when we got her into her night clothes.

Our day ended on a high note as well. We watched a couple of YouTube videos of piano concertos before I turned on an old CBS program about the filming of The Sound of Music. It is hard for her to follow the visuals, but I gave my own commentary that included references to places we had visited in Salzburg ten years ago.

It was a day in which we simply enjoyed being together. To me that was a perfect gift.

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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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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.

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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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Update on Our Move

My previous post was almost three weeks ago. That’s the longest time between posts since I started this journal more than ten years ago. There is a good reason for this pause. I have found myself incredibly busy with preparations for the move as well getting settled in our new home. Although I had been getting rid of things for six months or more, the job wasn’t finished until ten days after we moved. I can’t say that I can relax now, but the major work is finally behind me.

I’m happy to report that my immediate reaction to being here is quite positive. I feel at home. It appears that Kate does as well. During the past two years, quite a few people have asked how I thought she would adapt. I think that’s because people are aware that change can be difficult for those with dementia. One reason I hadn’t been concerned was the trajectory of Kate’s decline at the time I decided to move. I felt by this time she would handle it well.

Two weeks before leaving, I started telling her that we were going to move. She wasn’t bothered in the least, and even expressed some interest though she never remembered my telling her. I feel sure she knew something was going on during the packing and loading of our household goods. The morning after packing I heard her talking to “someone” (an hallucination) in our bedroom. I didn’t catch all that she said, but I did here her say, “We’re going to be moving.” And that day we did. After arriving in our new apartment, I told her we were in our new home. She liked it. She seems no different than she was in our house.

For me there are lots of differences, but they are good ones. I like the size of our apartment. Even though it is smaller than what we are used to, it is not cramped. We have everything we need. Having the availability of meals is also a plus. I feel sure that I won’t be eating out as often now that it is only a short walk down the hall to pick up dinner. The wellness center’s location next door via an enclosed hallway is a big plus. That will enable me to return to my gym activities that I stopped over a year ago.

I’m especially pleased with the contact I’ve had with staff and residents. It’s a very resident-oriented place. Each of the staff members I’ve met has been dedicated to making our home as comfortable and pleasant as it can be. In addition, I know quite a few of the residents, and the ones I hadn’t known are friendly. So far, I haven’t been able to engage in any of the activities. I expect that will change as life settles down.

None of this means that I don’t face some challenges. What would life be without those? People who know me well, know that I (try to) follow a routine from the time I get up until I go to bed. Moving has upset that routine in many ways. I haven’t taken my 60-minute-plus walks since two days before the move. I haven’t learned where things are and haven’t found a number of things that I know we brought with us. This can be bothersome, but it’s not a big issue. I know it’s just a matter of time before I develop a new routine. At this stage of our lives and Kate’s Alzheimer’s, it seems like the perfect place for us.