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A Very Special Day

Kate continues to have many “Happy Moments.” There is a general pattern to her days. She usually sleeps a good bit until 11:00 when the caregiver arrives. For the past six months or so, however, she has been waking up early (before 8:00 or 9:00). She doesn’t often remain awake. She doses off and on and rarely speaks before the afternoon.

Her best part of the day comes after 2:00. Sometimes it doesn’t start until we have ice cream at 3:30 or during dinner. Our evenings after the caregiver leaves are usually good “together times” for us although she is sometimes tired and goes to sleep early.

The one thing I can count on is that she never seems to have what I would call a bad day. She does, however, have days when she doesn’t display much cheerfulness. They are usually days when she is tired, and they typically come after a day when she has been awake a lot and very cheerful. Friday was one of her cheerful days. It started in the morning and continued most of the day and evening before going to sleep.

She was awake around 8:45 that day and was more alert than usual. She greeted me with a big smile and responded audibly to me. A few of her words were understandable. When moments like these occur, I usually drop whatever I am doing and get in bed beside her, and that’s what I did this time.

The night before I had received a text from the facilitator of a support group in which I participate twice a month. He reminded me of yesterday’s meeting at 9:30. I told him I would attend via Zoom. When I saw that Kate was in such a good mood, I sent him a text indicating I wouldn’t be there.

That was a wise decision. It got the day off to a very good start. Except for a short time during which I got her meds, something to drink, and fixed some homemade applesauce for her (my morning routine for her), we just enjoyed being together. She was very talkative for the first hour. Then she began to relax. About 30-40 minutes before the caregiver arrived, she went back to sleep, but we had had a grand morning.

I went downstairs to lunch while the caregiver fed Kate. I returned for a few minutes after lunch and found that her cheerfulness had vanished. I left to have coffee with a longtime friend, a Friday ritual of mine. When I returned, she heard me when I opened the door and began to smile. I discovered that her cheerfulness had returned as well. The caregiver told me that she talked with a number of residents and staff when they went for ice cream.

She continued to be cheerful and talkative during dinner and afterward. As we were leaving the dining room, several residents talked to her, and she smiled and responded audibly as well.

After getting her to bed and the caregiver left, we enjoyed our time together until we called it a night. It had been an exceptional day. Who would have guessed we might experience this kind of day so late in her Alzheimer’s? Not I, but I am enjoying “Happy Moments” like these to the fullest.

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Care for the Caregiver

In my recent posts, I’ve mentioned a number of reasons Kate and I have been able to live well while “Living with Alzheimer’s.” One that I overlooked is how much support I have received as a caregiver. I find that people are especially sensitive to the load carried by dementia caregivers and their need for help.

Three years after Kate’s diagnosis, I acknowledged her Alzheimer’s publicly. Since then, I’ve received an abundance of support from family, friends, and strangers. Everywhere I go people ask how we are doing and listen with interest as I tell them. Sometimes, people do something special to brighten our/my day. On several occasions when Kate was able to get out, a stranger bought our lunch. One couple (who are far from strangers anymore) buys my lunch almost every time they see me. That’s about twice a month. Only recently, have they let me buy their lunch occasionally. This same couple has given us several books. One contains all of Norman Rockwell’s paintings from the Saturday Evening Post. They have also given Kate several nice pieces of jewelry that the husband had given to his wife over their 61-year marriage.

This past week I received two very special gifts from friends. Coincidentally, each was a night out at a symphony concert. The first was from someone Kate and I have known for about fifty years. Our daughters are “Best Friends Forever.” She has a grandson who plays trumpet with the University Symphony Orchestra, and she invited me to join her and her family for dinner and the Symphony’s final concert of the season last Thursday. They performed Carmina Burana which I had not seen before. I hadn’t left Kate at night for more than two years, but I arranged for a caregiver to stay with her.  It was a great night out with friends, and the performance was outstanding. It was the first time I had attended a live performance in four or five years.

The second gift was this past Saturday night. Kate and I have had season tickets for our local symphony since the mid-eighties. As her Alzheimer’s progressed, we stopped attending but started giving our seats to friends. That was about five years ago. Our neighbor in the apartment next door was aware of my love for our local symphony and that I had once served on their board. Although she has a season subscription of her own, she had offered several times to stay with Kate so that I could go. Each time I declined.

Two months before the symphony’s last concert this past weekend, she once again offered to stay with Kate. This time she was a little more assertive and asked me to pick one of the remaining concerts, and she would stay with Kate. As it turned out, I had already been thinking about attending the final concert of the year. The orchestra was performing Mahler’s Symphony No. 1. It is one of my favorite symphonies. In addition, Kate and I were sponsoring the performance. I really wanted to go, but the caregiver I would like most to have stayed with Kate works for us eight hours a day Monday through Friday. I didn’t want to ask her to pull an extra shift on the weekend. It can be difficult to find help these days, so I was in a quandary about what to do. Our neighbor’s offer was timely, and I accepted it quickly. I’m so glad I did.  It was a wonderful night out. The concert was great, and I got to see quite a few people I hadn’t seen in years.

These two nights out were very special, and I am grateful for the kindness of friends like these and so many others that have helped us live well while “Living with Alzheimer’s.”

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A Week of Happy Moments

It’s been more than a month since my last post. That’s because I’ve been more occupied with things than usual. The most significant was an auto accident in January that resulted in my having to buy another car. I couldn’t locate the title of the old car and needed it to transfer the title to our insurance company. As so often happens, I ran into some complications that extended the amount of time I thought would be required. On top of that, my routine responsibilities have required more of me in recent weeks, as I find myself more involved in activities within our residential community.

The additional stress this has brought has been countered by Kate’s improvement over the past year. I have come to expect and be rewarded with “Happy Moments” every day, and we have had an abundance of those during the past week.

The first came at dinner last Sunday night. She was very responsive to almost everyone who spoke to her. I was particularly pleased when she replied to another resident who speaks to her almost every day. Each time she eagerly awaits a response, but Kate rarely replies. This time she responded beautifully. Not everything Kate said was understandable, but she did respond. Before we left the dining room, Kate spoke to several other residents as well. Everyone was as surprised and delighted as I was.

We enjoyed another Happy Moment Monday night. She was in a very good mood that afternoon. It continued after her shower and as we prepared her for bed. Kate was very talkative after the caregiver left, and I got in bed beside her. It was the happiest moment of the day. We talked for almost an hour before I decided to take my shower. I felt uncomfortable about leaving while we were both having such a good time, but I did it anyway. By the time I got out of the shower, her mood had changed. She was no longer interested in conversation, but we had a wonderful time before it ended.

During the balance of the week, Kate has been quiet in the morning and early afternoon but more lively and cheerful for the remainder of the day. I’m still unable to predict her behavior from one moment to the next; however, I have come to count on Happy Moments at some point in every day. That keeps me upbeat, and I am grateful.

Addendum: March 9, 2023

The day after my previous post was another day punctuated with Happy Moments. Kate was awake early (8:15 am) and very cheerful. That is very unusual for her. She would typically awaken after 10:00 and be in a more neutral mood. I went through my usual routine in which I remind her that we met in college, fell in love, married, have two children and that we’ll have our sixtieth wedding anniversary in May. Normally, she wouldn’t react at all. Sometimes she smiles. This time she laughed.

She soon went back to sleep but was beginning to wake up at 11:00 when the caregiver arrived. She regained her cheerful mood and said a few words to the caregiver while helping Kate get dressed. At one point, she said, “I love you” to the caregiver.

She was quiet once we got her into her chair for breakfast. That lasted the entire time while I attended my weekly Rotary meeting. When I returned, she displayed little or no interest in me. That is unusual but does happen once in a while.

It wasn’t until we were having ice cream that she began to regain her cheerfulness. That increased at dinner. She smiled a lot and talked to our caregiver and to a couple of the food staff. Her best moments of the day occurred during and after her shower that evening. She was talkative and laughed about a number of things. That mood continued after the caregiver left and until she fell asleep around 8:30.

Yesterday and again this morning, she was awake early and happy. I can’t predict what the day will be like, but the experience of the past few weeks makes me optimistic that she will have another good day.

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A Perfect Day

I admit that I am a “glass-is-half-full” kind of person, and at least one other member of our family is the same way. That would be one of our grandsons who following our birthday dinner for Kate said, “That’s the best meal I’ve ever had.” He had a chicken sandwich. I can’t say that about any chicken sandwich I’ve ever eaten, but yesterday I enjoyed what I consider a perfect day.

I was the luncheon speaker at our Rotary club. My subject was what our lives are like in the last stage of Alzheimer’s. I’ve spoken to a lot of groups over the years, but I take each one seriously in my preparations. Over the past few weeks, I’ve thought about what I wanted to say and coupled that with notes as well as a final draft of my remarks. I set aside time yesterday morning to rehearse as well as relax before my presentation. I figured that wouldn’t be a problem because Kate generally sleeps until the time (or near the time) that our caregiver arrives.

Yesterday morning was different. Kate was awake before 8:00. Not only that, but she was in a cheerful mood. When that happens, I take advantage of it.  Instead of working on my presentation, I got in bed beside her and turned on some YouTube music. As I have done on a number of other occasions, I selected a variety of sing-along music for Seniors. We sang with the music until the caregiver arrived at 11:00.  We ended the morning on a high note that was far more important than any last-minute rehearsing.

As it turned out, the presentation was well-received. I didn’t include everything I intended, but my remarks came across as a very open and personal account of our lives. That is what I wanted most, and the audience response suggested that it was the right thing.

When I returned home, I wondered if Kate’s mood would have remained the same. I was pleased to discover that she had. In fact, we had an especially good time at the café where we got ice cream as well as during dinner. It continued for at least an hour after the caregiver left at 7 when Kate was tired and fell asleep.

It had been a remarkable day. We’ve had very few days that good in more than two years. For me, it was a perfect day, and I think Kate would agree.

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A Day to Remember

Twelve years ago today shortly before noon, Kate’s doctor delivered the news we had expected but did not want to hear. The results of her PET scan showed signs of plaques and tangles associated with Alzheimer’s. Our lives have never been the same.

We went to lunch right after leaving the doctor’s office. We talked about the results and the implications as well as we could understand them. We decided to make the most of whatever lay ahead, but we never knew that we would be able to live so joyfully. That was true from the beginning and remains so to this day.

Looking back, I see that we lived in a big world filled with activity and social engagement. Our world today is much smaller. The highlights of every day are our afternoon trip downstairs for ice cream and our dinner in the dining room of our retirement community. You might think that is sad, but we have found that both activities involve a good bit of social connection with residents and staff that is invaluable to us. Our move to a life plan community came at the right time. We may engage in fewer activities now than in the past, but the support we receive is powerful enough to keep us happy.

So, I am grateful on this day. I’m grateful that she is still with me, and I mean that in several ways. First, she is still alive which beats the average life expectancy from diagnosis. In addition, she still lives with me, sleeping right beside me. Finally, although I don’t think she ever remembers that I am her husband and rarely remembers my name, our relationship remains strong. That means the world to me.

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Celebrating Kate’s Birthday

Kate’s birthday was this past Saturday, but the big celebration was the previous weekend when our two children and all five of our grandchildren were here. This was an occasion when the stars were in perfect alignment. That’s saying a lot. They were traveling from three different states.

Our daughter, her husband, and both boys arrived in three cars. Our son and his family all traveled together, but they were flying. With all the issues surrounding air travel lately, you couldn’t help wondering if they might encounter a few problems. Fortunately, they didn’t.

The visit was a good one for all of us. This was the first time since June 2020 that all of us had been together. Only our children had been to our new home. Now, our grandchildren also have a good picture of what our lives are like.

The highlight was a birthday dinner on Saturday. We were in a private dining room off the main dining room. Everyone ordered from the menu. That turned out well since all were able to find something suited to their personal tastes. One of our son’s boys said, “That’s the best meal I’ve ever had.” He had the chicken sandwich.

After ordering our meal, I invited everyone to share special memories with Kate. There were twelve of us, and everyone including our caregiver spoke. Each person had unique memories. It was a very touching time. I don’t think there was a dry eye among the group when we finished. I know that sounds sad, but it was a great moment of connection with family and our love for Kate.

After dinner, our daughter and son gave Kate a gift of cookies, each of which was topped with icing and something of special significance for her. I took a video of our son, Kevin, who sat beside Kate and explained what was on each cookie. The last one was an image of the “Clasped Hands” of Elizabeth and Robert Browning. Kate’s mother had often given copies of the original to friends who were newlyweds. We have one on a table in our living room.

I can’t predict how Kate will respond to situations like this, but all of us were amazed that she rose to the occasion. She listened attentively and responded appropriately to everything Kevin said. When he was almost finished, she even said, “Thank you.” Then after Kevin said, “We love you, Mom,” she smiled and said, “I like you.” Fortunately, I took a video that captured that moment.

I am happy to say that she has continued to display similar moments. They don’t occur every day nor do they last all day. I treasure them and feel grateful.  

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Feeling Joyful This Holiday Season

The Christmas season has always been special for Kate and me. Our first date was sixty-one years ago on December 19, 1961. We celebrate that day every year. Some years we have taken trips to New York City and several places in Europe. Mostly, our celebrations have been simple. For us, that is usually going out to dinner at one of our favorite restaurants.

For the past three years, it’s been impossible for us to get away from our home without the assistance of an ambulance or wheelchair-accessible van, but that hasn’t kept us from experiencing “Happy Moments.” This year those moments have seemed especially rewarding. That’s because they have become more frequent during the past few months. We celebrated the 61st anniversary quietly as we do every day. We had ice cream in the afternoon and dinner in the dining room chatting with residents and staff in both locations. Recently, however, we have experienced several other happy moments. Here are a couple of examples that occurred in the past few days.

I returned home from lunch on Saturday and entered our apartment with my customary greeting, “Hello, I’m home.” As I approached Kate in her recliner, I could see that she was smiling. She doesn’t always respond that way when I come home, but it does occur frequently.

I walked over to her, got down on my knees, and told her how happy I was to see her and her beautiful smile. Her caregiver said she had been talking. Very quickly, I got to hear that for myself. We spent the next forty-five minutes in an animated conversation. As usual, I couldn’t understand most of what she said, but there were bits of clarity sprinkled among the gibberish.

Things were going well, and I asked Kate if she would like me to read something to her. She did, and I picked up a resolution our church had given to her when she retired after nineteen years as our volunteer librarian. She used to love listening as I read it. In the past couple of years, she’s been less interested. This time she was engaged from the first sentence to the last.

After that, she looked like she was getting tired. I thought I might perk her up if I showed her some photos I had taken on our 50th anniversary trip to the Grand Tetons and Yellowstone. We used to look at our photo books regularly, but she lost interest a few years ago. Because she was in such a good mood, I thought I might have some success. I was wrong. She wasn’t interested at all. Our happy moment had ended.

Not long after that, it was time for our afternoon trip for ice cream. She hadn’t warmed up at all when we reached the café. Several people spoke to her, but she didn’t respond. Then another resident stopped for a few minutes. As she was about to leave, she said something to Kate who responded with a smile. That was the first sign of cheerfulness we had seen since she had lost interest in the photos I had shown her.

We soon went to dinner. As usual, we were the first ones in the dining room, and several of the dining room staff dropped by to say hello. She returned to her cheerful self and remained that way until she drifted off to sleep that night.

This experience is a good example of our quickly Kate’s mood can change. It’s also an example of how Kate’s mood can be affected by the way other people relate to her. I am thinking specifically about the “kindness” and “respect” that she receives from our residents and staff. We are fortunate to live in such a supportive environment.

Yesterday was another day of cheerfulness and conversation. Once again, it began when I returned home after lunch. This time she was more animated than she had been on Saturday. We had another extended conversation.

As we left for our afternoon ice cream, we ran into a resident and a friend who was with her. After a brief conversation, the friend told Kate it was nice to see her. I don’t remember what Kate said, but she made an appropriate response to which the resident said, “That’s the first time I’ve heard her talk.”

When we reached the café, we found that a resident was playing his clarinet with a small audience of other residents who had gathered around him. Kate enjoyed the music and responded by nodding her head in rhythm with the music.

Shortly after he packed up his clarinet, a group of children arrived from a local church to sing a few Christmas carols. Kate joined right in with the singing. She loved every minute of it.

At dinner, Kate talked with her caregiver off and on during the entire meal.

Kate and I closed the day watching a Christmas special with Andrea Bocelli and his family. She remained cheerful until after I turned out the lights for the evening.

Life at this late stage of Alzheimer’s is quite different than it was in the earlier years after Kate’s diagnosis, but Kate and I still enjoy happy moments like these. They are especially welcome during this season of the year, and I am grateful.

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Kate’s Aphasia

As I have noted in previous posts, Kate has made a good recovery from her stroke ten months ago. On the other hand, the stroke has had a lasting effect on her speech. Her aphasia is worse than before. That means I can’t understand most of what she says. My initial response was sadness for both of us. I felt it must be frustrating not to be able to communicate things she wanted to say, and I missed the kinds of conversations we used to have.

She began to experience aphasia a year or two before the stroke. At that time, she could tell that some things she said didn’t come out the way they should. She didn’t appear to feel frustrated, but she clearly knew that what she said wasn’t correct. Gradually, that disappeared. Now, she doesn’t display any sign of awareness that what she says doesn’t coincide with what she intends to say.

I never correct her. Instead, I act as though I understand every word and try to give her an appropriate response. Thus far, I can’t detect that she ever feels that I have misunderstood her. From the perspective of people watching us talk, I think we look like an ordinary couple having a conversation. If they could hear us, they might think both of us have mental problems.

In the last few months, Kate has grown more at ease with her surroundings and other people. That led to her talking more. Along with that, she sometimes says things that are very clear. They are always short reflexive comments to things that are said to her. During the past few days, she has made more clear comments than she has in the past couple of years.

I regret that I can’t remember many of the things Kate says, but I do sometimes jot them down right after they occur. Here are a few recent examples.

Yesterday (when we were having ice cream)

Resident (who saw me trying to help another resident with her phone): “What would we do without Richard to fix all our phones?”

Kate: “Yeah” and laughed.

At Home after Dinner

Caregiver (who had given Kate something to drink): “Did you have enough?”

Kate: “I suppose so.”

Few Minutes Later

Richard (after a comment by caregiver): “You’re giving (the caregiver) ideas.”

Kate: “I know it.”

Day Before Yesterday (Right after Finishing Ice Cream)

Kate to Caregiver: “Thank you for the party.”

Later at Dinner (Caregiver didn’t understand something Kate said)

Caregiver: “I don’t know.”

Kate: “She doesn’t even know.”

After Dinner

Caregiver: “I can’t go down my back doorsteps.”

Kate: “I can’t either.”

The caregiver and I laughed.

Kate to us: “You’re funny.”

Last Week (while having ice cream)

Richard to Kate: If you don’t like that, I’ll eat it.

Kate to Caregiver: “He would say that.”

Short Time Later (Caregiver had stepped away to get something for herself)

Caregiver: “I’m back.”

Kate: “I’m always glad to see you.”

Last Week

Richard to Kate: “I spilled some water on the floor.”

Kate: “We’ll see about that.”

These things may seem trivial to some people, but at this point in Kate’s Alzheimer’s, they are treasures to me. They are signs that the girl I married is still with me. She hears what is said in her presence and reacts accordingly. Along with that, she is happy. Me, too.

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“It’s a Wonderful Life”

I often run into people who ask how Kate is doing. Frequently, that is followed by asking me how I’m doing. I’m on a high right now. As many other caregivers say about their loved ones, “When Kate is happy, I’m happy,” and she’s been happy much more over the past few months. She’s been unusually happy and talkative for at least three of the past five days.

Not every moment in a day is a “Happy Moment.” That doesn’t mean that the rest of the moments are sad. In fact, she never has a sad day. When she is not happy, she seems intimidated or unsure about how she should act or what she should say. Other times, her emotional expressions are quite neutral.

Her Happy Moments are often related to the people around her and what is going on, but it is common for her to sit quietly and just smile as she looks around the room. It makes me wonder what she sees or what she is thinking that makes her so happy. When I ask, I never get an answer, but it’s good to see her happy.

It’s not just her feeling happy that affects me. It’s also what she says or does when she is happy. She has been talking more with her caregiver. I love observing their conversations. This caregiver is the only one she has responded to in this way during the entire five years we have had in-home care. As noted in earlier posts, I believe one reason for this is Kate’s general adaption to our new home in a retirement community as well as recovering from her stroke; however, I give this particular caregiver equal credit. She has made a difference in both of our lives.

The success she has had with Kate is her personality. She is kind and caring. She’s a bit “low-key” but talkative and gets along well with other residents and staff. She is not intimidating, and that makes it easy for Kate to connect with her.

Although Kate is more cheerful and talkative, there is one general pattern that remains. She is quietest in the morning. She still rarely says anything before lunch. It can be as late as 3:30 in the afternoon when we go for ice cream and sometimes as late as dinner before she is ready for any social engagement. Kate occasionally breaks this pattern and is awake and smiling early in the morning and maintains her good spirits the entire day and evening.

My being upbeat relates to the fact that, recently, she has been cheerful almost every afternoon and evening. The only difference is when the cheerfulness begins.

Our evenings continue to be our best time together. I wouldn’t describe them as “cheerful.” They are simply times when each of us is completely at ease. Once in a while, she is quite talkative. Most of the time, she is not. She is just winding down as she gets ready to go to sleep. It’s the same way for me. It is clearly the most relaxing time of our day, and it’s made even better by sharing this quiet time together – always with music. At this time of the year, it seems appropriate to say, “It’s a Wonderful Life.”

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Life Continues to Go Well

Three months ago, I reported that Kate had improved during the previous few months. The improvement was not with her Alzheimer’s. She was simply more at ease than she had been. She was awake more. She smiled more, She talked more and responded more frequently to residents and staff. At the time, I suggested that one reason for the change was that she has recovered from the stroke she had in February. I also indicated my belief that she was adapting to the new routine we have established here in our retirement community as well as the attention she receives from residents and staff. A month later, I said she had continued to get along well and wondered how long this would last.

It has now been a year and a year and seven months since our move and nine months since her stroke. I am happy to say that the bubble has not burst. She still requires total care with all of her daily activities; nevertheless, we still enjoy life and each other.

Kate has continued to improve. She is awake more. She has been waking up earlier in the morning, sometimes before 7:00 a.m. She usually goes back to sleep a little while later, but on a few occasions has remained awake all day. She is also less likely to go to sleep shortly after the caregiver leaves at 7:00 each night. The result of these changes is that we have more time together.

When she sleeps until the caregiver arrives at 11:00, I spend my time in the kitchen, living room, or office. When she awakes early, she is still slow to be ready for conversation, but I often get my laptop and sit up in bed beside her. As you would expect, I also accompany that with music we both enjoy. Very little talking occurs. Kate rarely says anything until after noon, but each of us knows the other is right there. We take pleasure in being together.

Our evenings remain the best part of our day. Kate is usually awake another hour or two before she goes to sleep. For several months after her stroke, she was asleep from the time we put her in bed until 11:00 or later the next morning. Sometimes she is talkative. Often she is not. In either case, she seems very much at ease. Relaxing music is also an important part of our time together.

Coincidentally, she was quite talkative last night. We talked for over an hour. As usual, her aphasia greatly affected our conversation. I can’t understand most of what she says although I can sense when she asks a question or other things she tries to communicate. Last night she spoke some words very clearly. She also expresses humor. She did that last night. She would say something and then burst out in laughter. I laughed with her and served as the facilitator to keep the conversation going.

This morning she was awake before 7:00. Not only that, she was talkative. After a while, she relaxed but never went back to sleep. I finished the rest of this post while sitting up in bed beside her. We watched and listened to Khatia Buniatishvili play Rachmaninoff’s Piano Concerto No. 2 until the caregiver arrived.

It is still impossible to predict how she will be in a particular situation. That seems to be governed by her Alzheimer’s. It’s like a little switch that clicks on and off when you least expect it. The residents and staff seem to accept this pattern with understanding. They are excited when Kate responds with a smile or an audible reply to what they have said, and they accept when she does not do either. In that respect, they are just like me.

I no longer wonder how long this good period will last. I simply enjoy the Happy Moments when they come. I have a sense the good times may continue a while longer along, but I realize that changes can occur at any time. In the meantime, life is good.