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Our Relationship

First, let me say that Kate had been in a good mood all day. Second, nothing in my caregiver’s toolbox works every time. On the other hand, Kate and I still work well together most of the time. Here’s an example from last night.

Kate was awake very early yesterday, just before 8:00. In fact, in the past few days, she has been awake as early as 7:00. It’s not unusual for her to do this occasionally, but she typically goes back to sleep. Not so, this time, and I took advantage of the opportunity of being together. I got the photo book I made for our recent anniversary and jumped into bed with her. We spent a good while going through it together. This was a time when she was interested. We enjoyed reminiscing about all the things we have done together. We only stopped when she began to tire. Then she rested until the caregiver arrived.

The afternoon also went well. Kate, the caregiver, and I spent over an hour relaxing on our balcony. That’s becoming a regular part of our daily routine at least until the summer heat makes it less appealing.

Although she is adjusting to our getting her out of and back into bed as well as changing her, Kate continues to protest, at least a little, most of the time.  That was true when we got her into bed after dinner. As the caregiver started to pull her slacks down, Kate responded forcefully both verbally and physically.

I responded by getting into the bed from my side. She was holding tightly to the caregiver’s arm with one hand and her pants with the other. I spoke slowly and softly and asked her to take my hands. She didn’t release her grip. As carefully as we could, the caregiver and I took her hands and put them in mine.

Then I said something like this. “Sweetheart, it’s about time for Lilly to go, and before she does, she needs to get you ready for bed. She needs our help. I know you would like to help her.” She said she did. I continued, “What we can do is just relax and let her do what she needs to do. She’ll be very gentle. She knows how to do this. I know this isn’t easy for you, but I am right here with you. You can hold my hands and squeeze them as tight as you want.”

She began to relax. Lilly did what she needed to do, Kate never protested. The two of us talked about how much we appreciated having someone to help us. When she was ready for bed, she said, “Thank you” (to Lilly). A potential problem had been averted.

This recovery wasn’t a singular event. It grows out of our longtime relationship and individual personalities. We are both conflict avoiders, and each of us likes to please the other. That has carried us a long way in our marriage, but I never imagined that it could pay such benefits in the last stage of her Alzheimer’s. Will it last forever? Obviously, I hope so, but I can’t even be sure it will happen the next time we encounter a similar situation. Still, I’m optimistic that the nature of our relationship will continue to help us face future challenges as they arise, and I know they will.

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Accepting Each Day As It Comes

“It’s a day to celebrate although I don’t know what lies ahead.” That’s a quote from my previous post in which I talked about our 58th anniversary and that Kate had given me the perfect gift the day before. As it turned out, the actual anniversary wasn’t exactly the way I would have liked although it ended well.

Unlike the day before, she slept late and wasn’t in a particularly good mood when she awoke. I decided not to wait until later to give her the anniversary card and photo book I had prepared. She is almost always more cheerful in the afternoon.

In my eagerness, I didn’t wait long enough. When I told her it was our anniversary and read her card, she didn’t show any emotion at all. It seemed like she knew I wanted her to be excited, and she was going to show me I couldn’t do it. I gave her the photo book with 95 pages of pictures of people and places that had been special to us the past 58 years. It was clear after showing her the cover and first couple of photos that I was facing a losing battle. I made a wise decision to try again later.

The opportunity came as we ate dinner. She enjoyed her food, and she became more cheerful. When she finished her ice cream, the caregiver went to the bedroom to get things ready for the night. I picked up the photo book and showed it to her. She took to it right away. It was too much to go through all of it, but she liked what she saw. She was cheerful and loving for the rest of the night.

Yesterday was a very good day. For the third time since we moved six weeks ago, the caregiver and I took her out of the apartment. For the second time, we walked through the park across from our building. We followed that by relaxing on our balcony until time for dinner. She enjoyed the day.

Of course, I would have liked the day of our anniversary to have been like the day before and the day after, but I had little or no control over that. By this time, however, I’ve learned the value of accepting each day as it comes. That doesn’t mean I simply give up and let it go. I always try to make things better. Sometimes I succeed; sometimes I don’t. I try not to push her. That only makes things worse. If I just back away for a little while, she often comes around naturally. One thing is sure. I know that the bumps in the road are going to occur, and I am encouraged with the knowledge that we’re also going to have more “Happy Moments.” I wonder what’s in store for today.

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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 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.

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A Touching Moment

Despite many challenges that accompany Kate’s Alzheimer’s, I attempt to communicate that we also experience Happy Moments. I believe I’ve been successful in that, but some experiences can also be described by other adjectives. One of those occurred two days ago. It was “touching” for me, her caregiver, and a friend who had dropped by to say hello. Let me explain.

Kate is a member (now inactive) of P.E.O., a women’s organization that supports educational needs of women. Kate is a former president of her chapter and has always liked and been impressed with another woman who preceded her as president. Several years ago, we bumped into her in the lobby of a local movie theater. We were leaving as they walked in. After chatting briefly, Kate said, “Who is that? I recognize her, but I don’t know who she is. I liked her.” I thought that was a beautiful example of the loss of her rational abilities and the strength of her intuitive ones. The feeling she had for the woman had clearly stuck with her.

Yesterday, she stopped by to say hello on her way to meet a neighborhood bridge group. I was pleased that Kate was awake early and in a cheerful mood. When the friend arrived, I took her into the living room to talk with her. It had been a long time since she had seen Kate, and I wanted to update her and let her know that she might not recognize her. In fact, shortly before I had told Kate she was coming, and she had no idea who I was talking about. Nothing I said rang a bell.

Kate was in bed. I entered ahead of her friend and explained that she had a surprise guest who had come to see her. The friend walked to her bedside, and Kate responded like the Kate I’ve always known as a welcoming host to her home, one of the things passed down from her mother. With a big smile (something else she got from her mother), Kate reached out her hand, and her friend took it. Then Kate took her other hand and stroked the top of her friend’s hand.

She asked the friend to sit down on the bed beside her. That began a ten-minute conversation between the two of them. Kate’s words didn’t come out the way she would have wanted, but she communicated a sense of recognition and love for her friend. While they talked, I wiped tears from my eyes just observing the poise and feeling that Kate conveyed to her friend. There have been many other occasions when I hoped she could respond in the same way to a friend or to our daughter and son, but she couldn’t. Had it not been for her being in bed and getting her words mixed up, she would have been just like always.

I’ve heard and read accounts of other caregivers who have observed surprising experiences like this with their own loved ones. This was not the first time she has surprised me with things she has said or done, but this was the most touching I have witnessed. It comes during a week when she has gotten along particularly well.

It was an opportune time for her friend to visit, but there was more to it than that. The friend was very calm in demeanor and tone of voice. She spoke slowly and in short sentences. Most importantly, her words also conveyed an interest in Kate. I believe one of the problems Kate has is feeling left out because so much of the conversation around her is among the other people who are present. I think that is because people don’t know what to say to someone with dementia.

We caregivers are always trying to understand why our loved ones say or do things, but what is most important is that we treasure moments like these. I will hold on to this one for a long time.

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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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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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Treats for the Caregiver

Those of you who are regular followers of this blog know well the role that eating out has played in our lives. When sheltering began in March, that became a thing of the past. In late May, restaurants reopened with capacity limited to 50% occupancy and often with reduced serving hours. Kate and I began to eat out again, two or three nights a week and lunch on Sunday. That was still a far cry from eating out for lunch and dinner seven days of the week, but it was a significant relief from being completely homebound.

For us, the primary benefit of this habit was keeping us socially active, something that is often a problem for people “Living with Alzheimer’s.” We had developed quite a social network that went beyond the friends and acquaintances we encountered. We also developed friendships with servers, owners, and managers. They have been priceless members of our “team” of supporters.

When Kate and I tested positive for COVID, our routine changed dramatically. Kate, of course, has been in bed most of the time since she returned from the hospital nine weeks ago. Although we have caregivers seven days a week from about noon until 7:00, I’ve only eaten out a few times since then. That was because the caregivers come around lunch and leave around dinner, and those are times when I have been helping with the meals for Kate.

This past Wednesday I did something different. I took a late lunch and went to one of our favorite restaurants. Until March, we had lunch there every Tuesday for more than six years. When I arrived, I asked if the young lady who had served us most often was on duty. She was, but her tables were already full. I told the hostess, who was new and didn’t know me, that would be all right.

After being seated at a table with another server, I discovered that the server I had asked about was taking care of the table next to me. When she saw me, she stopped at my table. We talked briefly, and I explained why we hadn’t been there the past couple of months. To me, that brief exchange was energizing.

Not long after that, the shift manager noticed me and came over to the table to say hello. It wasn’t long before he asked if he could take a seat. That began an almost hour-long conversation. He’s an interesting man who came to the US from Romania. By chance, Kate and I had met his wife and daughter at the restaurant several years ago. His wife is Puerto Rican and a major in the Air Force. I was fascinated with his story of how they met and how they juggle their lives around their different careers as well as the cultural differences between them.

It turned out to be an enriching break from my daily routine as a caregiver. I had recognized before we got the virus that experiences like this were becoming less  important for Kate than for me. The benefit I receive from social contacts is more valuable at this stage of her Alzheimer’s.

I will say, however, that I am not dependent on eating out to satisfy my need for social engagement. I keep up with several college friends and a former professor by phone and email. I have a list of others with whom I often have lengthy phone calls. I have continued my longstanding involvement with our local United Way as well as the foundation for our largest health system, our local symphony orchestra, and Rotary. I am also a member of a men’s coffee club that is a local support group meeting via Zoom twice a month.

I am not as socially involved as I used to be, but interpersonal relationships still play a significant role in keeping me going. Even little things make a difference. Yesterday, I took care of a small responsibility as a member of the only church committee on which I continue to serve. It’s the birthday committee. Each of us calls 8-10 people a month on their birthdays. I’ve done this for 5-6 years and occasionally think about passing it along to someone else, but it’s another pleasant social experience. I think I’ll stick with it.

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Good Things

Our daughter and son were in town this past weekend to celebrate Kate’s 80th birthday. It’s always nice to have them, but this weekend was very special. Most importantly, Kate enjoyed herself. Saturday, the day of her celebration, she was out of bed all afternoon and through dinner. She joined in with the singing of Happy Birthday and gobbled up her cake and ice cream.

Beyond that Jesse, Kevin, and I had more opportunity to talk among ourselves than we usually do. That gave me a chance to update them on our situation as well as for them to see for themselves how we are doing. I consider them as partners in our lives as seniors. Since we are moving to a continuing care retirement community in April, the two of them looked around the house for things they might like to have. All-in-all it was one of the best family times we’ve ever had, and I think they felt the same way.

Jesse left on Sunday, but Kevin didn’t fly out until Monday afternoon. That gave the two of us a chance to have lunch together before dropping him off at the airport. He has been coming for a long weekend two or three times a year since 2014, and this was the first time we have had a meal together without Kate. It was another good opportunity for us to have a leisurely chat.

Starting with the weekend and extending through Wednesday, Kate had a string of six consecutive good days. That doesn’t mean we were able to get her out of bed each day. It means that she enjoyed herself more than usual. We’re experimenting with a new routine. We don’t try to get her out of bed too soon after she wakes up and has her breakfast/lunch. We have found that she is more likely to express a desire to get up later in the day. We’re trying to take advantage of that inclination, and it seems to be working. If she isn’t interested, we accept that and wait until another day.

Once again, I like to emphasize that even at this late stage of Kate’s Alzheimer’s, she and I are still having good times together.