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A Nice Way to Start the Day

We’re off to a good start today. At 7:15, just as I was beginning my morning walk, I saw on the video cam that Kate was about to get out of bed. When I got to the bedroom, she seemed wide awake and wanted to get up. She was confused but cheerful. The only problem we encountered was getting her on the toilet. It was a challenge explaining that I wanted her to sit on it. It was only when I physically assisted her that she was able to do it.

I got her dressed rather quickly and we went to the kitchen for breakfast. Afterward, I took her to the family room where we went through one of her photo books. She expressed an unusual degree of enthusiasm and several times commented on how happy she was. When we finished, she wanted to rest.

I decided to take advantage of that and prepared to begin my walk. I walked only a few minutes before she started to get up. I don’t ever recall her getting up so soon after beginning to rest. She was still in a very good humor. I got my laptop and showed her photos taken while she was pregnant with our first child and the time of her birth. She was quite interested. As she had done earlier, she mentioned how happy she was. At one point, she said she wanted to tell me something. She said, “I just want to thank you and all the others for doing this.” As often happens, she apparently felt she was in someone else’s home and was being entertained by a group of us. I didn’t ask her to explain.

I wasn’t surprised when she wanted to rest again. I took her to her recliner where she is asleep. I’m not sure how long she will rest. I think I will go back to my walk, but I feel good about the way our day has started.

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A Very Good Day With One Strange Thing

It’s always good to be able to report the especially good days that Kate and I continue to have. That never means they don’t include sad, troublesome, or strange experiences mixed with all the good. The contrast between the good and not-so-good has never been more striking than the past two days.

I consider a day to be good when Kate seems especially happy all or most of the day. Friday, she began the day cheerfully and showed no obvious indication that she was disturbed over any confusion she may have had. She didn’t ask where she was or who I was. I didn’t go in to check on her until just before noon although the sitter was to arrive at 1:00. She was awake and got up easily. We were eating lunch when Mary arrived.

The transition from our being together and then handing her off to Mary has gotten smoother over time. It has been even better since we have been sheltering. I think that is a direct result of my not leaving immediately when she arrives and the fact that I am still around much of the time she is here.

About forty-five minutes before Mary was to leave, I overheard Kate get up from her rest and begin a conversation. Then I heard her ask about the bathroom. Because we still try to maintain physical distancing while the sitter is here, I walked into the room and asked if she wanted to go to the bathroom. Kate was pleased to see me. I feel sure she had forgotten I was still in the house.

When we walked back into the family room, Kate greeted Mary warmly and said, “Who are you?” I said, “This is your friend, Mary. She stays with you when I am not here.” I added that I still had a few things I wanted to take care of in the other room and left the two of them together. They engaged in an easy-going conversation.

I ended up letting Mary go about twenty minutes early. When I did, Kate thanked Mary for being here and went on to say a number of good things about her. After Mary was gone, Kate told me she really liked her.

The day had gone well, so I was surprised when we had a strange experience after she had gotten in bed. I had turned on some YouTube videos of Andrea Bocelli. She relaxed for a short time and then said she needed my help. I went to her bedside, and she showed me her hand and said, “See that?” I didn’t see anything but told her I did. She wanted me to pull back the covers and proceeded to take off her night gown. Then she gave me careful instructions about running my hands over her forehead, around her neck, over and under her arms and down to her feet. She was very serious about this as though something harmful was on her body. When I finished, she was fine.

It was almost two hours before I went to bed. She was still awake. I don’t know whether she waits for me to come to bed or she has rested so much during the day that she isn’t sleepy. I think it’s the latter, but she is always glad when I join her. It’s a good way to end the day and is typical even on days that haven’t gone as well as this one did.

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Kate’s New Friend

Quite sometime ago, a Rotary friend whose wife has Alzheimer’s, asked me if Kate enjoyed stuffed animals. He said his wife loves them, and he had given her a collection of them over the course of her disease. I told him Kate had never had a particular interest in them but enjoys children as well as cats and small dogs. I don’t think I mentioned the ceramic cat in our family room. She’s always been fond of him and for years kept him snuggled around the toilet in the bath off our laundry room. I moved him to the family room a couple of years ago. She sees him more often now and almost always stops to greet him in the morning.

More recently, I’ve thought of getting her a stuffed animal, but it was one of those things I never got around to doing. That changed a week ago but not because I finally took action. A colleague at the office brought us dinner last week and along with that a stuffed bear for Kate. He (she?) was an instant hit. Since he entered the picture at a time when her memory is weak, she doesn’t usually ask for him. There has been one exception. I don’t recall the exact circumstances, but she had been holding him a few minutes before and went to our bedroom. She said, “Where is he?” I said, “Who?” She answered, “My little friend.”

Her interests change a lot from day to day and, sometimes, from moment to moment. I wondered how long her fascination would last. Today marks a full week since the bear became a part of the family, and her interest has not diminished. She loves holding him in her arms and often talks to him. There are a variety of situations in which she has been holding him but then does something else that makes that difficult.

One of those times is eating dinner. Each night I take the bear from her and rest him against a pillow on the window seat next to the table. I chose that because Kate has been taken with the pillow she thinks is a person. Since placing the bear, she hasn’t “seen” the person.

Anytime she has been holding the bear, and it is time to get a takeout meal, she wants to take the bear with us. He has even made a couple of trips to the bathroom with her.

We haven’t settled on the bear’s gender but may be coming close. The other day Kate said she thinks it’s a girl, but she slips back and forth between referring to “her” as “he” or “she.” We’ve talked about a name, but that, too, is unsettled. Two days ago, I did a search on girl’s names and read quite a few to her. The only name Kate liked was Charlotte. I like it as well, but I keep thinking it is a better name for a spider. (Sorry about that. I couldn’t resist.)

So far, Charlotte has been a friend to hold while Kate is seated or resting, but I’m also exploring its therapeutic benefit. Yesterday, for example, she was confused when she awoke. I brought Charlotte to her and used her a little bit like a puppet to see if I could relieve any of her anxiety. I discovered there is a spot at the back of the bear’s neck that, when pressed, causes her head to nod. Similarly, squeezing her around her waist causes her arms to move up and down. It didn’t take but a moment for Kate to take Charlotte in her arms. She felt better.

I’m not surprised that the bear has been so well-received. Kate is definitely more childlike now. I suspect we may find that Charlotte provides increasing comfort in the days ahead. Everyone needs a friend.

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What Comes and Goes But Never Disappears?

The other day, I received the following reply to one of my tweets. “It is interesting how some with Alzheimer’s do not know your name or relationship but know who you are and that you are their special person. I have no doubt that Kate knows you are her special person.”

I, too, have no doubt that I am Kate’s “special person.” That is one of many things that I didn’t anticipate nor understand when we started this journey together. I won’t say that I fully understand now, but I do recognize that “knowing” someone is much more complex than I originally thought.

From the beginning, I knew that Kate would forget me, but I didn’t think about it in any detail. It was just something I envisioned as one of the saddest moments I might encounter.

I remember the day I discovered that my mother didn’t “know” me. She and I were talking while my dad was in another room. She had mentioned not having any family. I said, “What about your husband?” and she said, “I don’t have a husband.” I was stunned. I hadn’t noticed anything in her behavior that would suggest she didn’t know him. I asked about her sons. She said, “I don’t have any sons.” That blow was softened by her answer to my previous question, but it still caught me off guard.

More specifically, I was surprised because she almost always related to me so warmly and repeated something of a mantra. “You’re such a nice boy. You always were.” I didn’t understand how this could be. It made me wonder how long she had not known me as her son. How had I missed that?

I understand a little better now. At least, my experience with Kate has made this seem perfectly normal (that is, for someone with dementia). In addition, my learning about the difference between rational and intuitive thought or abilities has been powerful in facilitating my understanding. Knowing my name and relationship requires rational abilities, and she has lost those. Developing a comfort level and feeling heavily dependent on me requires something different, her intuitive abilities. Those abilities allow her to sense whether she likes me, trusts me, and depends on me. It is those abilities that will last a long time. For some PWD, they last forever.

Like many people, I thought forgetting me would just occur one day and that she would never remember me again. I quickly discovered memory for names, places, etc. comes and goes. At first, the loss of rational memory occurs infrequently but gradually increases. During the past few weeks, Kate has had greater difficulty with her memory of many everyday things like fork, napkin, and Dr. Pepper. In the past few days, she has had times when she couldn’t remember anything about her parents. In addition, her memory of my name and relationship has been even harder for her to recall than in the past; however, she is still comfortable with me though curious about who I am.

Something new has occurred in the past few months. It reminds me of something similar to an alter ego. We had a good example yesterday morning. I noticed on the video cam that Kate was about to get up. When I reached her, she seemed wide awake, quite unlike most mornings. She greeted me enthusiastically and was very talkative. I decided to take advantage of that. Instead of proceeding to get her up, I sat down on the bed beside her and talked with her. We had a beautiful 15-20-minute conversation. I was taken aback, however, when twice she mentioned her husband. Both of them were positive references. Until hearing this, I would have sworn she remembered both my name and our relationship.

As I suggested earlier, this is not the first conversation in which this has happened. I expect it will happen again. Perhaps I will be less surprised next time; however, the point I want to make is that she had two separate memories of me. One was the person with whom she was conversing, someone she recognized and with whom she was very comfortable and liked. The other was her husband who was not present but was also someone with whom she had a similar comfort level. The difference was only the distinction in our “official” relationship. He was her husband, and I was her “friend” (?).

I should add that she has often thinks of me as her father. That first happened a couple of years ago. It almost always begins with her asking, “Are you my daddy?” I usually answer with something like, “Would you like that?” or “I’m happy to be your daddy.” Then she smiles and calls me “Daddy.” After that it seems totally forgotten until the next time.

Until I was part of this conversation and several others like it, I never imagined this happening. It is one of many things that can seem strange or impossible, but with dementia almost anything is possible. It certainly adds another layer of complexity to the concept of “knowing” someone. Knowing me comes and goes: nevertheless, in some ways, it never disappears.

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An Especially Good Morning Yesterday

I can’t ignore the fact that caring for Kate has become more challenging. On the other hand, there are real high points intertwined with the challenges. That has definitely been true the last couple of days.

On the whole, Kate has been more insecure. Some of that arises from her physical instability. She almost always wants to hold my hand when she walks. It happens every time she sits down. It also occurs when she is emotionally disturbed. It is hard for her to explain it to me, but she  experiences anxiety attacks.

This has happened twice in the past three or four nights. She didn’t know anything at all and was quite disturbed. They both occurred at least an hour after she had gone to bed. She couldn’t tell me much, but she was frightened. Fortunately, it didn’t take too long for her to calm down. All she needed was for me to lie down with her and comfort her.

We had a particularly good morning yesterday. Except for being unsteady on her feet, she seemed fine when she got up. Getting her ready for the day went smoothly, and she was ready to go. I told her I could fix her some cheese toast, and we went to the kitchen. I had finished my breakfast a short time before but fixed myself some coffee and sat down with her for what may be the fourth or fifth time in the past few weeks. I don’t know what has prompted her getting up so much earlier. It may be getting more sleep during the time she rests.

After breakfast, she wanted to know what she could do. I suggested we go to the family room and look at one of her photo books. We were only a page or two into one of them when I could see that she was tired and asked if she would like to rest. She took me up on that and rested about an hour and then sat up. I took a seat beside her and opened the book we had begun before she rested. For some reason, she didn’t respond with much interest. It’s hard to find something that works all the time.

Then I thought about reading something to her. I picked up The Velveteen Rabbit from the table in front of us. It had been quite a while since we last read it. I had gotten the impression that my reading to her had lost its allure. Anyway, I decided to try it again. Of course, she didn’t remember it. I was pleased that the impact of hearing it again was like the first time I read it to her several months ago. She expressed her emotions audibly throughout the book. When we approached the end, we were both a bit teary. I joked with her that we were quite a sight, two people approaching 80 being moved by a children’s book.

Kate’s rational thought and abilities are so weak that I find it interesting that she is able to enjoy the book so much. I am almost certain she is unable to process the story line. Her own emotional response must relate to the emotional content that is central to the story. I also suspect that is what has made the book a popular one for such a long time.

If that Happy Moment had been the highlight, I would have called it a good day, but there was more. When we finished, Kate said something about her parents. That made me think about showing her some of the things we have from her parents’ home. She was eager to see them. I began by showing her a salt-glazed pitcher on a counter behind us. On the bottom is a typed note from her mother explaining that her father bought that for his mother and after her death it became hers. She noted that it was for Kate and that Kate could pass it along to our daughter, Jesse. Kate was very touched as I read it to her.

From there, I took her on our usual tour through the living and dining rooms. She was especially moved by the things I showed her. Interestingly, I am getting more nostalgic myself. All of these things have also been a part of my life. I suppose that is a function of aging, but I believe it is more than that. I think that the narrative I present to Kate is actually rekindling my own memories in a way that the items themselves hadn’t done in the past. One thing I do know is that we spent a good portion of our morning simply enjoying ourselves via our intuitive abilities. Moments like these continue to uplift us even as the challenges increase.

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Our First Virtual Doctor’s Appointment

The last several times Kate has been to the dermatologist have been unpleasant for her. The visits were not routine. She had a squamous cell carcinoma on her forehead. The first visit she had a biopsy. She reacted strongly to the local anesthetic and to the scraping itself. It took at least fifteen minutes to calm her. Although she didn’t remember that on the two follow-up visits, she must have sensed this was not a place she wanted to visit. She didn’t undergo any pain either of those times, but she was uneasy and eager to get out.

These experiences were on my mind when I noticed a couple of other growths that could be a problem. One is very near her left eye just below her eyelash. The other is on her back. I planned to call before the doctor’s offices closed but didn’t. While I was walking in the neighborhood earlier this week, I bumped into her dermatologist who is a neighbor of ours. She asked how Kate was doing, and I told her about the spots. She asked if I would like to schedule a tele-visit appointment. I jumped at the opportunity, and we met her at our kitchen table via FaceTime on Friday. It was during that short interval that Kate was awake. I think it was the doctor’s appointment that enabled me to get Kate up for a brief time following our lunch and before she went back to sleep.

I know this type of meeting with a doctor could be less than ideal. This one was a perfect situation. It took no more than fifteen minutes during which I sent her pictures of the spots that concerned me. In one case, she wasn’t sure what spot I was talking about. She drew a circle around the area and send it back to me. I was able to confirm that she saw the area I meant. It was scar tissue left from the biopsy she had taken in the fall. It is practically invisible now. The other two spots were both benign. Kate has had a number of these in the past.

This episode reinforced my thinking that our current situation may serve to speed up the use of technology for purposes like ours. It was convenient. More importantly, it was non-threatening for Kate. It would have taken at least three times as long if we had driven to her office. If only there were a way for Kate to have her teeth cleaned and checked via a tele-visit with her dentist. That’s not in the cards; however, there must be many situations like ours for which this would be ideal.

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Does Kate Still “Know” Me?

It’s been almost two years since Kate first asked my name. I mentioned it to a friend in Rotary who has been very active in our club’s support of a project to raise funds for Alzheimer’s research (CART, Coins for Alzheimer’s Research and Treatment). A week later he made an announcement encouraging club members to contribute and mentioned what I had said. He conveyed how devastating that must have been for me.

While I would not have used that word, it was a moment that took me aback even though I knew that it would come eventually. I also knew that this was just forgetting my name in one moment and that at other times she would recall. I took it as a sign that the day might be coming when she would completely forget who I am and wondered how long that would be. At this point, I still don’t know. That’s good news because it means she continues to remember off and on both my name and that I am her husband. In fact, in the past few months, she has called me by name more than she did a year ago.

There is even more good news. Although it is common for her not to remember my name and relationship, she almost always recognizes me as someone who is familiar and with whom she feels comfortable. She trusts me. Two incidents occurred yesterday that are good illustrations.

At 8:30 yesterday morning, twelve minutes into my walk, Kate sat up in bed. I went to her. She was ready to get up. Although she expressed her general unfamiliarity with the location of the bathroom and what to do when there, she did not appear to be disturbed at all. I took her hand and walked her to the bathroom.

For months, she has asked what to do when I show her the toilet. Recently, I started telling her to pull her underwear down and sit on the toilet, and everything would come naturally. Once seated she understands I was right and sometimes, as she did yesterday, seems amazed that “the water just comes out.”

After using the toilet, she asked, “What next?” I told her it would be a good time for a shower. She didn’t hesitate and just asked where and what to do. I turned on the shower and led her inside. She was very comfortable with me and preferred that I take the lead in bathing. The was the first time she just stood there and turned around when I asked so that I could reach all around her.

As we walked out of the shower, I said something I don’t often say, “Do you know who I am?” She said, “No, who are you?” I gave her my name, and we continued to the bedroom where I helped her dress. Then she lay down to rest. I believe that during the time from getting up until that moment she didn’t know my name or our relationship, but she obviously trusted me. Of course, that could have been because I was the only one available. I believe, however, that her comfort level expressed the nature of our relationship and that she would not have responded the same way with a stranger.

The second illustration occurred late yesterday afternoon and early evening. Following her afternoon rest, she sat up and said she was ready to eat. I told her it was a little early for dinner and suggested she have a snack to tide her over until then. We went into the kitchen where I gave her a banana. She didn’t remember what a banana is but was delighted when she took the first bite.

It was clear that she also didn’t remember we were in our house, so I decided to give her a tour of the dining and living rooms. We must have spent ten minutes in the dining room. I am embellishing my commentary even more now. I pointed to the chandelier (never remembers what a chandelier is) and explained that was from her parents’ home. I said, “Can you picture your mother and daddy looking at different fixtures and finally deciding this was the one they believed was best for their new home then under construction. Her mother was quite a cook and loved to entertain. I reminded Kate of all the celebratory occasions and specific family members that would have eaten under the light of that chandelier. She loved the tour, but all the family items I showed her never made her recognize she was in her own home.

When we entered the living room, she was tired of standing and asked if she could sit down. We sat on the sofa that had been in her parents’ living room. I reminded her of the times we had sat on that sofa and sneaked a kiss or two after her mother and daddy had gone to bed. I didn’t yesterday but sometimes I also remind her of the doorbell that her parents had installed for her grandmother who stayed with them in the winter. Her mother rang the doorbell as a signal when it was time for me to leave.

Kate was tired and asked if she could rest on the sofa. I told her that would be fine and that I would get my laptop and sit with her. She rested about forty-five minutes before asking when we were going to eat. I told her we could order takeout from Chalupas right then.

As she got up, she asked me where I live. I said, “Right here with you. This is our house.” She looked at me skeptically. I didn’t say anything more. Her conversation in the car going to and returning from the restaurant made it very clear that she didn’t know my name or our relationship. I responded to one of her comments by saying, “I hope you feel you can trust me.” She said, “I do. You’re a nice guy.” I said, “I’m glad to hear that because I like being with you.” She said, “I like being with you.”

We ate our meal and then went to the bedroom where she started to work on puzzles but became frustrated with the first one. I gave her a couple of photo books to look at while I watched some of the evening news. She wasn’t interested. I asked if she would like to get ready for bed. She was. She was very cooperative in taking her medicine and putting on her night clothes. She went to sleep but woke at least for a minute or two when I got in bed an hour and a half later. She responded to me warmly just as though she knew I was her husband. Did she? I don’t know. I do know that she tapped me on the arm early this morning. I looked at my watch. It was 4:44. She said, “I love you.” I said, “I love you too.”

Does it really matter whether she knows my name or that I am her husband? She knows “me.”

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A Day of Recovery

I’ve written two long posts in a row. There is little reason to do the same today. What I believe is important  is that the day went well. I let Kate sleep until she got up on her own about 11:00. Even better news is that she seemed fine. I easily got her to the bathroom and dressed. Then we were off to pick up our lunch.

We started to look at one of her photo books after lunch, but she wanted to rest. She slept a good while and then just rested for the balance of the afternoon. She was asleep when I told her it was time for dinner and not eager to get up, but she did.

As soon as we finished dinner, we went back to the bedroom. At 7:15 she was in bed. She went to sleep rather quickly and had a peaceful night until 4:00 this morning when she said, “What should I do?” I told her it was a good time to sleep. She asked me a question about some people she thought were in the room. I told her I had taken care of them, and we could go back to sleep. I did. I assume she went to sleep as well because I didn’t hear from her again.

It was an uneventful day, no drama. I think all of us need that once in a while. I know we did.

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A Happy Day

I’m glad I’ve been able to relay so many good times that Kate and I have had since her diagnosis, but you must have noticed that sometime last year I began to talk about things that have been more challenging. These challenges seemed to escalate just before or during our recent holiday season. The good times were far from over, but I have had to work harder at problem-solving. Still, the balance between good times and trying times remains heavily tilted in favor of the good ones. I think that is a major reason for my lack of interest in adding more help, something I could quintuple without its costing me a penny.

There are also a few days that stand out because they are filled with happy moments. When they arrive, I think of each one as a gift. That is what is was like yesterday. It began at 5:15 in the morning. I was awake and considering whether or not to get up. It turned out that Kate was also awake. She moved closer to me and said with a slight chuckle, “Hello, how are you?” I told her I was fine. She reached across my chest, and we spent the next 30-40 minutes just enjoying being close. I don’t know whether she remembered my name or our relationship, but she conveyed her comfort and love that was very deep.

At 6:00, I told her I was going to get ready for the day and have breakfast. Just before 8:30, I heard her say, “Hey.” She often talks in her sleep. I waited a moment to see if she were calling me. She said, “Hey. I’m in here.” I went to see what she wanted. I found that she was quite cheerful. We chatted about ten minutes. I asked if she wanted to get up. She said, “I don’t know. What should I do?” Knowing this was earlier than usual, I told her it was up to her. I mentioned that if she got up, I could give her a blueberry muffin. Her eyes brightened, but that didn’t cause her to bounce right up. We talked a little more. She finally said, “Why don’t I rest a little more and you tell me when I should get up.” I did. Fifteen minutes later, I went back. She was ready to get up. She was confused about the usual things (where she was, where the bathroom was, what the toilet was, etc.) but not disturbed and needed my help with everything. More importantly, she happily accepted my help.

I warmed up her muffin and gave her a side of fresh blueberries as well as a few slices of canned peaches. I fixed myself some coffee and sat with her. She loved her breakfast, and each of us enjoyed the other’s company. When she finished, we adjourned to the family room where I picked up the photo book of Facebook pictures that I purchased two weeks ago. I wasn’t at all surprised when she said she was tired after only looking at a few pages. She lay down on the sofa while I got my laptop and returned to join her a chair across from her.

While she was resting, I received a phone call from a friend telling me about a popular lunch place that was serving takeout. We’ve eaten there before, but it had been a long time. I went to their website to look over the menu. I ordered a turkey melt for Kate and pulled barbecued chicken with a mixed green salad. We went to pick it up. She stayed in the car while I got the food. As I walked in, I saw homemade tomato basil soup and Brunswick stew to bring home as well.

After lunch, we walked from the kitchen into the family room. Kate immediately commented on the spring flowers in the back yard. The azaleas and dogwoods are in full bloom. She delighted in pointing out the things she especially liked. When we finished, she wanted to rest. I walked her to her recliner. She asked if that was where I wanted her to sit. I said, “Yes, and I’ve got your Dr. Pepper right on the table beside you. She was childlike in her excitement and chocked up about my having her favorite drink. Once in a reclining position in the chair, she said mentioned something about her friends. I said, “I hope I’m one of them.” She gave me a gentle and sincere smile and said, “I think you’re going to be.” She paused and added, “What is your name?” I said, “That’s one of the things I like about you. You are so honest.”

The biggest surprise of the day came late in the day after she had rested a long time. She was enjoying the beauty from her recliner, taking in all the spring flowers and new leaves on the trees.. I had been sitting a while and decided I wanted to walk around inside the house a few minutes. She asked me something about it, and I casually asked if she would like to walk with me. I was shocked when she said yes. That was the first time she has done so. She asked where I was going to walk. I decided to take advantage of this opportunity and told her I was going to walk down the street a short way and then come back. Off we went.

I wondered if she would back out before we got to the street, but she didn’t. The walk was short in distance (four houses down from ours), but very enjoyable. She was enthusiastic about everything she saw starting right outside of our garage. It took about ten minutes to get to the street. This continued down the street and back. She was like a little child at circus. As she does inside the house, she wanted to point out everything to me as though I couldn’t see it myself. Thirty-five minutes later, we were back in the house. I considered this quite a victory. I had finally gotten her to walk, and I enjoyed seeing how happy she was. It was a perfect day to be outside, lots of sun and temperature in the lower-70s.

I put on an album of Peter, Paul and Mary while we ate dinner. Kate and I enjoyed hearing so many songs that were popular just before and during the early days of our marriage.

The only rough spot of the day occurred after dinner. Thinking she was somewhere other than home, Kate was ready to leave. I explained that we were home and that we would spend the night here. She accepted that. It wasn’t long, however, before we ran into another problem. She got the impression that people were coming to our house. I mentioned that people were not supposed to gather together like that. She asked why. I told her about the coronavirus pandemic. It was impossible for her to understand. I could see that was a losing cause and tried to divert her. I was successful briefly, but the she would remember again that people were coming to see us. That is when I turned, once again, to music for help.

Most of the music we play on YouTube is either classical or Broadway. Hearing Peter, Paul and Mary during dinner prompted me to see what YouTube had. It was no surprise that there is a lot. The rest of the evening was devoted to PP&M. It was another happy moment and a perfect way to end an almost perfect day.

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How Are We Doing?

Over the past week, I’ve received a number of emails and phone calls inquiring about Kate and me and how we are adapting. My answer is that we are “managing” or doing “all right.” That’s different from my normal response of “remarkably well” that has seemed appropriate for so long. The abrupt disruption of our daily routine means we are a little bit “off balance” but on the way to “righting ourselves.”

The most important thing I can report is the past few days have been rather busy for me. Most of that relates to the disruption of our daily routine by the current restrictions under which we are now living. Some of them relate specifically to changes that Kate has made. The latter fall in the category of the common things that happen all the time but seem more troublesome while we are going through an adjustment to being largely housebound. We’ve grown accustomed to being out-and-about. Let me outline a few things that have occurred this week.

This past Sunday, Kate woke up and was frightened. When I said I would like to take her to lunch, she didn’t want to go out because people would make fun of her. She said, “No one likes me.” I tried to reassure her. That didn’t help until I said, “Amanda likes you.” Her eyes lit up, and she said, “Who is that?” I told her she was our server at Andriana’s. That was enough to redirect her attention.

During the week she has been more confused than usual about her food and eating. At Andriana’s, she didn’t recognize or know how to eat her bread. As I usually do, I took a large piece and broke it into pieces and buttered it for her. Then I put the plate with the bread in front of her. She said, What’s this?” I told her it was her bread, and she asked me what she should do. I told her she could just pick it up and eat it. She looked confused. When she finally decided to pick it up, she used her fork for the bread.

After finishing her bread, she put her drink where her dinner plate was to go. When the server brought our meal, I told her I would place it on the table and asked Kate to move her glass so that I could put her plate down. Although I tried several times to explain what I wanted, she never understood me. I had to move the glass.

That is just one of many things she may not understand at a meal. Tuesday night, I prepared shrimp cocktail. She had forgotten what shrimp were and didn’t understand how to eat them. I held one in my hand to demonstrate and explained that she could pick it up by the tail, dip it in the ketchup (yes, I didn’t have cocktail sauce.), and take a bite. She didn’t understand what the tail was and doesn’t see well enough to notice the way I was holding it. I decided leaving the tails on wasn’t a good idea and cut them off for her. Then I told her to pick them up with her fork. She didn’t understand until I did it for her. I had also split a baked potato for us along with sliced apples. She enjoyed them but dipped both in the ketchup.

Two other issues involve her getting seated whether in a chair, the sofa, or getting in the car. It takes much longer (not because of Covid-19) to sit down than one would expect. I need to tell her, point, and put my hands on the chair she is to use. Even after that, she sometimes starts to go to another chair at restaurants. It happens regularly at home when I want the two of us to sit on our sofa. I like her to sit in the middle so that I can sit on the end where I have more light to read the text in her photobooks. We go through a similar I point to the middle of the sofa, walk over to it and put my hand on the middle cushion. Yesterday, she took a seat at the other end of the sofa.

Getting in the car involves a challenge of knowing which side of the car to get in and what to do when she is there. I don’t believe she distinguishes one side from the other at all. I do know that I need to lead her to the passenger side, open the door, and assist her getting in. When I open her door, she sometimes says, “What do I do?” or “I don’t want to drive.” or “You get in first.”

As I’ve said before, these are all little things, but they seem a little bigger now that I am trying to concentrate on managing a new life at home.

So, how are we doing? We are managing, and we will adapt as we have done in the past. I suspect that’s exactly what most of you are doing. We’re going to make it, but I feel for those who find themselves in situations that are far more difficult and serious than ours. We are fortunate that our biggest problems are little ones although that doesn’t count the biggest one of all, Kate’s Alzheimer’s.