Reflections on Leaving Our Home

Two years ago this month, I took a big step and made a down payment on an apartment in a local continuing care retirement community (CCRC). I was motivated to do this for at least two reasons. First of all, Kate and I cared for our parents for twenty-four years. We didn’t mind that. We would do it all over again if faced with the same situations; however, we wanted to make sure our children’s responsibilities for our care would be minimal. I don’t recall that we talked about a specific way to do that, but I felt that we needed to plan for an easy transition to the last chapter of our lives. Neither of us wanted to put them in the often awkward position of letting us know that it was time to give up driving or to move out of our home. Living in some type of senior living facility was always an option. I didn’t establish a specific time frame for a move or assume that we would have to move at all. I approached life a step at a time and was prepared to make changes as I thought needed before our children would feel the need to step in.

That leads to the second reason for my decision. Kate was approaching the last stage of Alzheimer’s. I was handling things with minimal help, four hours of paid help three afternoons a week. She had become totally dependent on me, and I began to wonder what would happen to her if something happened to me. That was the catalyst that led me to explore a CCRC. We have several local options, and, in the past, I had visited at least four of them. I’ve known quite a few people who lived or had lived in the one I chose. It was one of two that were located in places I felt would be convenient for us. I knew the marketing director and that they were about to begin construction on a new building for independent living. I made an appointment with him. Two weeks later, I gave him our down payment.

I haven’t waivered in my decision since that time. As time passed, Kate declined, and the pandemic hit us. At least one of my good friends has asked several times if I were eager to make the move. The answer was and still is that I am not eager, but I believe it’s the right decision. It provides access to all the options we might need in the future. That includes assisted living, memory care, skilled nursing, and rehab. In addition, the doctor who established the geriatric practice with which Kate’s doctor is affiliated has opened a practice on the grounds in the building next door to ours. Yes, he makes house calls as well. I haven’t made the change for Kate just yet, but her doctor and I have talked about it. She actually suggested that as a good possibility. I intend to explore it further once we move in.

Having made that decision two years ago, I’ve learned a couple of things. One is that two years is not a long time. It passed quickly. Had I been eager to move, I’m sure I would have thought the day would never come. That doesn’t mean that I have any regrets about my original decision. I don’t. I also believe I made it at the right time. I didn’t want to move when it might have been disturbing for Kate. Her decline during that time has been significant. I don’t expect her adjustment will be difficult although I feel equally sure she will notice some difference in her environment.

The second thing I’ve learned is that a move like this is stressful. I’ve had an abundance of help. In addition to Kate’s caregivers and the woman who cleans our house, I engaged three other people to assist me with different aspects of the move. One is the decorator Kate has worked with about thirty years. She helped me decide on the furnishings to take with us. I know someone else whose business is assisting seniors who want to downsize. She is handling all aspects of the physical move itself. The third is a woman who has cared for the plants in our yard, on the patio, and front porch. She has also taken care of our holiday decorations. She and I have been worked together 6-8 months getting rid of things in our closets, cabinets, and attic.

Despite this assistance, I have found it impossible to turn over everything to them. There are just many decisions I need to make myself. In fact, I view this move, possibly our last one, as a continual process of decisions regarding what is important in life. Numerous times, I have looked at boxes of “things” we have accumulated over the years and thought a person in the ministry could preach a year’s worth of sermons about them. Most of them are of little value to me now. I’ve discovered they are also of little value to our children or anyone else.

That said, I’ve found that what matters most are intangibles. Uppermost in my mind are the memories that I will take with me. Recently, our weather has been perfect for getting outside. Kate, her caregiver, and I have spent time as much time as we can on our patio enjoying the spring flowers and watching the new growth of leaves on the forest of trees behind our house. It’s been a therapeutic break from the preparations of moving and brought back memories of the good times we’ve had here. I especially remember special celebrations like my parents’ 65th and 70th anniversaries, my dad’s 100th birthday and those leading up to it starting with his 90th. There were also grandchildren’s visits and the time spent in and around the pool. I would also include the almost 5 ½ years Kate’s mother spent with us with 24/7 care provided by 6-7 caregivers who became part of our family. But most of all, I think of the good times with Kate before and after her diagnosis, and it is all but certain we will have more of them during the next week that we are here. I will leave with a sense of satisfaction and gratitude for these memories and many more.

The other day I thought about the move my parents made from their home to live close to us. My dad was the same age I am now, nearing 81. They had lived in South Florida much longer than we have lived here. The move was stressful for him. My mom was in the early stage of dementia. He did his best to see that she got acquainted with people. One of the first things he did was join a local senior center. He became active in Kiwanis and a seniors writing group. He loved his computer and kept up an active email correspondence with friends from the past and many new ones. He adapted very well and lived to be 100. I’m optimistic that I’ll do the same.

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.”

Living with Unpredictability: Part 1

Living with COVID-19 has brought about significant changes for everyone, and they keep coming. Kate and I are no exception; however, I am especially mindful that Kate’s Alzheimer’s is also undergoing changes that have upset the very nice routine we have had for years. I’m a person who likes consistency but “Living with Alzheimer’s” means increasing unpredictability. Her sleeping “pattern” is a good example.

Before Kate’s diagnosis, we tended to follow a regular schedule each day of the week although it changed periodically with other changes in our lives. That has been true true since the diagnosis as well.

Until about two years ago, her daily schedule meshed rather well with mine. I got up around 6:00. That gave me time to have breakfast, take my morning walk, and take care of email and household chores. She got up between 8:00 and 9:30. That is when we started going to Panera almost every morning and the café in Barnes & Noble in the afternoon. Add eating out for lunch and dinner, and we had a full day. Then we enjoyed a little time for relaxation at home before going to bed.

The first big change came about when she started sleeping later in the morning. We began to skip Panera and go straight to lunch. At the same time, she started resting shortly, sometimes immediately, after returning home from lunch. The consequence was that we also stopped going to Barnes & Noble in the afternoon. We still ate out for dinner, so our schedule continued to maintain a significant amount of stimulation for both of us. In addition, when she wasn’t resting at home, she worked jigsaw puzzles on her iPad. That kept her occupied and her brain focused on a pleasurable task.

We began to move away from this routine early this year when she twice remained in bed until well past lunch. The pandemic brought about more change. Eating out came to an abrupt halt, and Kate lost the ability to work her puzzles on the iPad. The result was a drastic reduction in outside stimulation. It has been especially tough for Kate. That, in turn, has required more of my time to keep her entertained. Despite my efforts, our lives have become more sedentary.

Kate adjusted by resting more than she did previously. That may be what is behind the variability in the time she awakes in the morning. Of course, it is also possible that it relates more directly to changes in the brain as a outgrowth of Alzheimer’s.

At first, I suspected that her staying in bed so long related to fear or anxiety related to her confusion upon waking or to frightful delusions. On at least two occasions, I have said, “You look frightened. Are you?” In those instances, she said she was but didn’t know the cause.

More recently, she hasn’t appeared to be frightened, simply tired. That was true two times last week. The first time I was successful in getting her up. The second time, I was not, at least until after 1:30. I first tried to wake her at 11:00. She woke up and seemed in good humor; however, when I suggested that she get up for lunch, she balked. I let her rest another twenty minutes and tried again. Still no luck. I tried two other times and finally gave up.

I had planned for us to go out for lunch but shifted gears and had lunch delivered to the house. At 1:30, I tried again, this time with success. The only problem I had was that she didn’t recognize me as her husband. Usually that doesn’t make a difference. This time she wasn’t as comfortable with my help in the bathroom or in helping her dress. She ate her lunch. Then she had a hair appointment.

As in the past, she sometimes gets up early. Last Friday, that was 6:25. This occurs frequently enough that I am keeping more breakfast food for her. Although her early starts interrupt my daily routine, I adjust easily to that. I enjoy the time with her. In addition, I know she will want to rest before lunch. That gives me a chance to take my morning walk. Not only that, but she normally wakes in time for us to have lunch on those days we have a sitter.

What is next? I’m not sure. Although the unpredictability of her getting up represents a significant change in our life style, it is far from being a serious problem. I know we will have bigger adjustments in the future. I expect that she may eventually sleep for extended periods during the day. I don’t look forward to that. I would rather live with the current unpredictability.

Making Changes to Deal with Stress

Before starting this post, I remembered that I had dealt with this topic almost a year ago It was instructive to read them again. I found them to fit with my more recent ones involving my blood pressure and stress.

At that time, I noted that my stress was increasing but felt it was lighter than that of many other caregivers. (I continue to believe that.) Then I commented on several factors that might explain why I felt that way. In addition, I outlined what I was doing for stress control.  (If you care to read them, go to  the “Archives” to the right of this post. Select 2019 and then September and scroll to September 1 and 2, “Thinking about Stress.)

Stress is a bigger issue now, and there is every reason to believe that the source is not going to diminish. The recent experience with my blood pressure suggests it is time to make a few changes. My own awareness of the stress the day before taking any BP readings was a clear sign of a problem. Then my overreaction to the readings themselves suggests not only the stress but my OCD tendency in action. As they say, “It’s time to pivot.”

In my previous post and quite a few others I have mentioned my “caregiver’s toolbox” of ways to the problems I confront with Kate. Except in the two posts mentioned above, I’ve said little about the “toolbox” I use to help me with my own problems. Until now, I haven’t had to search for any new tools.

One of those is joining a caregiver support group. I have always intended to join and one in particular appealed to me. It is one of a variety of activities sponsored by a local Alzheimer’s Café. I have been out there twice in the past 2-3 years, once by myself and once with Kate. I have also had several phone conversations with their director and one or two others on the staff. I have received their monthly newsletter since my first phone contact with them.

Until now, I hadn’t participated for two reasons. The primary reason was that I didn’t feel the need. My stress was minimal and quite manageable. Because of my prior and current experiences with dementia and caregiving, I didn’t have a special need to get information about caregiving per se. I did need social contact but was getting that in a variety of other ways. The second reason is that the times of their support groups and men’s coffee group didn’t fit my personal schedule nor that of our sitters.

My recent blood pressure episode and covid made a difference. My stress is greater, and the activities at the café are now via Zoom. That means I can connect right here at home. To be sure, it is not like being together physically, but it is a start.

One of the first things I did after meeting with my doctor about my blood pressure was to join the men’s coffee club. They meet in the morning the second and fourth Friday of each month. I met with them right away and will do so again next week. There were about eight of us. One other person also attended for the first time.

We had a good conversation. It is somewhat like a support group in that there were periodic references to dementia, caregiving, and our personal situations. That was particularly true in our introductions. Most of those attending were in the caregiving role now although one or two had already lost their spouses to dementia. The rest of the meeting was just a time to chat. The group has a leader who attempts to see that no one dominates.

On the whole, I enjoyed the people and will definitely be back next week unless it is one of those mornings when Kate is up early. That is likely to occur once in a while. Next Thursday I will have my first meeting with the support group. If it meets my expectations, I will continue it.

That leads me to another important step I’ve taken. I talked with the agency that provides our in-home care about adding another 4-hour shift on Thursday. That is up from the three afternoons a week we have had the past three years. We began this past Thursday, but the agency is short-handed because of covid; therefore, they don’t yet have anyone who can come regularly on that day. They are working on it and have arranged for the same person who came this week to come next week as well.

Joining the men’s group and support group as well as adding more in-home care is something that people often suggest to caregivers, but there is something else that has been at least as important for me if not more important. That involves how I manage my time. I’m making changes in that area as well. That will require a little more explanation. I’ll do that in another post.

Another Change Since Sheltering-in-Place

I’ve talked about the negative impact that seems to relate to sheltering-in-place, but some changes are good. Saturday and again this morning, Kate was up early enough for me to fix her breakfast and enjoy being with her while drinking my coffee. I think these were the fourth of fifth times she has had breakfast since our being homebound. Being together for breakfast has never been a part of our marriage. I am an early riser and like to eat soon after I am dressed. Kate sleeps later and hasn’t had a great interest in breakfast, at least not right away.

Although her getting up for breakfast changes my morning routine, I find that it has two benefits. One is that it gives Kate something more nourishing than what she had in the past. Second, it provides us with a pleasant relatively quiet moment to start our day together. In each case, I have played soft music that is relaxing to fit the pace that we both enjoy in the morning. Our conversation matches the pace of the music. That works well for Kate and for me as well.

Is this change caused by our being homebound? I don’t really know. I only know that it corresponds to the time we were asked to shelter-in-place. Prior to that time, we would have gone to Panera for a blueberry muffin. Kate enjoyed the 400-plus-calorie muffin, and we both enjoyed the social contact it provided.

We only leave home for takeout now. That gives us much more time together and has been a bonus. On the other hand, it also leads to Kate’s being bored, so she sleeps or rests much more now. I believe the extra rest she gets plays a direct role in her sometimes waking earlier. It’s not just that she gets more rest. Her rest is intermittent and irregular. She rests a while. Then she sleeps. Then she rests while awake. I am sure that some days she gets more sleep than on other days. I believe she wakes early the mornings after days she has had more sleep the day before.

Whatever the reason, I have enjoyed the change, and it encourages me about the future. For a long time, I felt that we would ultimately transition to a day when we spend more time at home. Covid-19 may be introducing that transition earlier than I had anticipated. It reminds me that change can bring about both positive and negative consequences. This is one I welcome.

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.

Adapting to Changes in Kate’s Sleep Pattern

I’ve alluded many times to my OCD tendencies and my adaptability with respect to Kate’s Alzheimer’s. For the most part, I am pretty flexible and don’t experience any anxiety when things can’t go the way I planned. The hardest thing has always been my commitment to be on time. Kate’s Alzheimer’s presents a problem for me. I try to allow plenty of time to have her ready for all appointments and other obligations. This would include those that are self-imposed like having lunch together before the sitter arrives. I had a schedule that was working, but Kate’s recent changes in her sleep/rest pattern have upset things a bit.

Ironically, I’ve experienced more anxiety on the days we have a sitter than on the days we don’t. That doesn’t seem like the way it should be. It really shouldn’t, but the problem for me is two things. I feel a need to have Kate ready when the sitter arrives. It also involves the plans I have made for myself during that time. On Monday, my Rotary club meets at 12:30. The sitter arrives at noon. That works fine unless I’ve had trouble getting Kate up and dressed. This is self-imposed because I wasn’t sure how comfortable Kate would be having the sitter get her out of bed, help her with toileting, and dressing her. I am less sensitive to that now, but I still like for her to up and dressed when I leave.

On the other two days, I generally have more flexibility. The sitter arrives at 1:00. That gives us an additional hour to get ready and eat lunch. In addition, I rarely have any appointments as early as 1:30. That allows me a little extra time. It is not unusual for me to stay as long as fifteen minutes after the sitter arrives. Now that we are homebound, I have spent as much as two of the four hours at home. I could easily get along without a sitter now, but I don’t want to run the risk of losing them should I temporarily discontinue their service.

Several times recently Kate hasn’t gotten up until late in the afternoon. The first day I made a concerted effort to get her up. I didn’t push her too hard but far enough that I got a hostile reaction. I backed away. Since then, I have let her stay in bed as long as she wanted, but it bothered me.

Friday was another one of those days. I took a very non-threatening way of waking her. About thirty minutes before trying to wake her, I turned on music that I hoped might gently wake her. Then I took my laptop into the bedroom and worked on a blog post. I waited for her to open her eyes and see that I was there and then casually spoke to her in a way that she wouldn’t take as the first step to get her out of bed. I was very relaxed. We talked a little, but I didn’t try to get her up. She seemed in a good humor but sleepy. When I finally asked if she would like to have lunch with me, she wanted me to go ahead. I told her I would really like to eat with her but said nothing more. She didn’t move. I told her I would be in the kitchen if she needed me.

This time I believe I really accepted this as part of the natural progression of her Alzheimer’s and not a time for her to change. I’m the one who needs to do that. Having done it, I feel much better. To my surprise, I think the overall adjustments we are making in connection with being homebound have made this change easier than it might have been. It’s been a time when I have fewer obligations even those that are self-imposed. Except when I prepare a meal, our lives are more relaxed.

Since Rotary is not meeting, I have changed the time for our Monday sitter to 1:00 from noon. That and the fact that I don’t have to rush away when she arrives creates a greater feeling of relaxation. Like everyone, I am accepting a lot of things that were not my first choice. Given everything that is happening, fretting over her sleeping seems less important than it was before.

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.

Life is Different for Us Now, and It’s More Than Covid-19

It is Thursday, three days since my previous post. Some of my readers have let me know they wonder if something is wrong when I miss a day or two. I usually say that I have been busy and that we haven’t experienced any significant problems. That answer doesn’t fit this time.

I have been busy, but a good bit of that has involved problem-solving with Kate. She hasn’t been her normal self. It seems to be an escalation of the problems surrounding her sleeping late. It’s not just the sleeping that is the problem. She has been more confused. She frequently thinks she is not in her own house. Now, however, it seems that she typically believes she is somewhere else. I don’t believe there was a time yesterday when she realized she was at home.

It’s not just home that she doesn’t recognize. She is also having more trouble recognizing me as her husband. It’s ironic that she is simultaneously remembering my name more than she has in a long time. That provides me with a certain amount of comfort although she frequently asks, “Where is my husband?” or says, “I wish Frank were here.” That was especially true yesterday. Before I tell you about that, I need to follow up on our very busy day Sunday. It will be easy to summarize.

You will recall that she was up early on Sunday and very active. She wasn’t agitated, but she was awake all but a very brief time during the entire day. She slept well that night and was wiped out the next day. I made an effort to get her up for lunch before the sitter came. That was a lost cause. I decided to let her sleep/rest as long she wanted. I finally got her up for dinner at 5:45.

She didn’t want to come to the table. I set up a card table and folding chairs in the bedroom, and we ate our dinner. She was still tired after dinner and wanted to go to bed. She slept well. When she woke up on Tuesday, she was back to normal. We had a good day. That brings us to yesterday.

Kate got up about 6:45. I don’t recall her ever getting up so early in years except for a bathroom break. I was in the kitchen when I looked at the video cam. She was starting to make up the bed. When I went to her, I found that she seemed wide awake. I offered to take her to the bathroom. She didn’t want to go. She also didn’t want to get dressed. She wasn’t irritated with me. She just didn’t want to do these things. She was somewhat like she had been on Sunday. She felt there were things she needed to do.

I had taken my plate of scrambled eggs with me to the bedroom. She saw them and said, “That looks good.”  I told her I could make some for her. She liked the idea, and we went to the kitchen.

Throughout the entire day, she kept “losing” me. In most instances, I was very near her at the time. She just didn’t see or recognize me. This first occurred as I walked ahead of her from the bedroom to the kitchen, she lost me a couple of times and asked where I was. She didn’t seem terribly upset, but she was relieved when she saw me. This continued at the table while I was getting her breakfast of apple juice, strawberries, grapes, and scrambled eggs. She ate every bite. I was pleased because she hasn’t wanted eggs in a long time. I’m glad to have a more nutritious option for blueberry muffins.

It was also a day when she didn’t recognize me as her husband nor that she was in our home. She was especially surprised when I started to load the dishwasher. She acted like I was her guest and said she would do it later.

Several times she said, “Where is your brother?” I told her Birmingham. She said, “Why is he there?” One time she said, “When is he coming?” This surprised me as she hasn’t said anything about my brother in a long time. I can’t imagine what prompted her to remember him.

After breakfast, she was tired and wanted to rest. I suggested she get dressed first and then rest in the family room. She accepted my suggestion and slept almost an hour, much less time that I expected given that she was up so early. Since I had missed my morning walk, I took advantage of the time and took it then (inside the house, of course).

The next surprise was that she started to get up after she was awake. Normally, she would continue to rest and only get up when I suggest that we do something together. I asked her where she was going. She said she didn’t know. That’s when I suggested that I come over to the sofa and look at one of her photo books with her. She agreed.

I picked up a photo book and sat with her. She didn’t know who I was and asked my name. I told her, and she wanted to know our relationship. I told her I was her husband. This was a time when I shouldn’t have been honest. She was bothered by not knowing. I told her I didn’t mean to upset her. She said she wanted me to be honest. She went on to say she was not herself. I told her I recognized that. She wanted to know why she was this way. She said, “It’s not just my memory. I don’t know how to do things.” I said, “That must be scary.” She said, “It is.’

She wasn’t as interested in going through the photos as she usually is. That led me to go in a different direction. I started to give her a tour of the living and dining rooms. We passed by a photo of our twin grandchildren. She enjoyed seeing them. Then I showed her a pitcher with a note from her mother that said it had been a gift from her father to his mother and that she had kept in her living room many years and was to go to Kate who could pass it along to our daughter Jesse. Kate was moved by this. From there we went to the living room. I showed her a cabinet with eighteen porcelain dolls. Her father had given them to her mother for anniversaries, birthdays, and other special occasions. At this point, she got very emotional and indicated this was too much for her. I suggested we eat lunch. I fixed her a grilled ham and cheese sandwich and a salad with chicken for me. She sat at the table while I prepared the meal. Several times, she said, “Where is he?” Each time, I walked to her and said, “I am right here. I wouldn’t leave you.” She was very relieved each time.

After lunch, we went back to the family room to look at photo books again. That’s what we were doing when the sitter arrived. Kate was still confused. I decided not to abruptly  get up and leave. Mary had brought her lunch and ate it in the kitchen while we continued to look at family pictures. When Mary finished, she came back to the family room and took a chair across the room. Finally, I told Kate I thought I would take a walk around the neighborhood and asked if that would be all right. She said that would be fine, and I slipped out.

I was gone forty minutes. I expected to see Kate asleep on the sofa. Instead, she was still looking at her photo book. That is very unusual. She always likes to nap after lunch. In addition, I don’t remember a time when she spent that long looking at photo books by herself. It makes me think that she was trying to find something that would jog her memory.

More importantly, she was more confused than when I left. She looked at me with a flash of recognition but was puzzled. I think she recognized me as someone she knows but not as her husband. I sat down with her and went through the book giving her information about the people she in the book. Several times she asked my name and relationship. I told her, but she didn’t express any great emotion.

I could tell rather quickly that she needed something to divert her and thought of her father’s family movies that had been transferred to DVDs. I mentioned them to her, and she was interested. We went back to the bedroom where I put in one of the DVDs. The part we watched was shot around the mid-to-late 1930s, so the quality of the film is poor. The sound that accompanies them was made by Kate’s father, mother, and two cousins as they watched the films we watched. That helped us identify most of the people. That is especially important for the children we have only known as adults. Kate was immediately taken by what she saw. We watched for an hour before ordering a takeout meal for dinner.

During the film, Kate periodically said, “Where is my husband?” Each time I said, “I am right here.” She experienced immediate relief and then asked the same question again. It was a bit frustrating for both of us, she because she didn’t know where I was and didn’t recognize me as her husband, I because no matter what I said I could give her only momentary comfort.

We went through this same routine at dinner. After we finished, she was tired and ready for bed. She was still awake when I joined her two hours later. She didn’t ask about her husband, but I could tell by the way she responded to me that she didn’t believe I was he.

Busy Days with “Unintended Consequences”

It’s been more than forty years since I was involved in academic sociology, but I occasionally think about sociological concepts that apply to current situations. Sociology focuses on human activity as part of a social system. The most basic one is family, but it also includes systems like the workplace, the various voluntary organizations, and extends to larger systems like a community, town or city, country, and beyond. When there are changes in one part of a system, there are often implications for other parts as well. Sociology has no monopoly on this view. It’s just that sociology specializes in this perspective. Common sense alone frequently reminds that we are all interconnected.

We need no better example than the current global impact of the spread of Covid-19. Like it or not, this has dramatic consequences for all of us. I suspect that many of us have discovered corresponding changes we hadn’t thought about. Sociologists refer to these as “unintended consequences.”

My own thought about the impact of our not eating out (as well as that of others who have reached out to us) focused on the reduction in our social contact. That has happened, but there are other things I didn’t think about (unintended consequences). By themselves they are not seriously disruptive. One by one, however, they represent increasing responsibility and effort on my part. So far, the changes are manageable, but everything requires more thought than it did before Covid-19.

The specifics may be different, but you are no doubt having similar experiences. I don’t mean to suggest that our situation is any more difficult than yours. My intent is just to describe what is happening with us and how we are handling things.

As you would expect, my biggest concern has been for Kate. She hasn’t been able to grasp what is going on. I don’t think she perceives any of the changes that have taken place. She doesn’t remember that we have been eating out for about eight years. Thus, she treats getting takeout and my preparing meals as though this is the way life has always been.

This might lead you to think that the changes do not affect her;  however, I believe there has been one important unintended consequence for her. Because we are home significantly more than before, she rests more. I address some of that by personally spending more time going through family photo books and touring the house with her. Still, she really gets tired and likes to rest. Most of her confusion occurs during or right after sleeping or resting. As I have mentioned before,  this is more likely in the morning after a full night’s sleep. The upshot is that she has experienced more confusion and delusions this week.

Wednesday was particularly problematic. We got off to a good start when Kate woke up for the day at 7:45. I was about to put my eggs in the skillet. She said she wanted something to eat. First, I took her to the bathroom. When we finished, I decided not to get her dressed because I thought she might want to go back to bed. Then I told her we could have breakfast together and gave her a blueberry muffin I had gotten at Panera the day before. I fried my eggs, and we ate breakfast together for the second time in the past few weeks. It took her a while to eat her muffin, but she did and then wanted another. I had purchased three and put two in the freezer. I took one out, heated it in the microwave, and gave it to her.

After breakfast, we looked at one of her photo books together. Very shortly, she wanted to rest. An hour later, we looked at one of her other books until it was time for lunch. I called one of our regular restaurants that is offering takeout service. I placed the order, and Kate and I picked it up.

As we were eating, she said, “Where is my mother?” Sometimes when she asks about her parents, I tell her they are gone. Other times, I don’t. This time I said her mother was in Fort Worth. She was confused about other things. I don’t recall exactly what they were, but they involved her background and family. She was disturbed about not knowing and wanted to learn. She also didn’t know me.

I told her I would be able to help her and took her into our dining room and living room and showed her things that had been in her parents’ home. We have done this several times in the past couple of weeks. This time she was more animated by what she was learning. Right away, she was no longer disturbed.

Most of the day, she felt that she was somewhere other than her home. As we walked through the two rooms, she kept identifying items that she wanted to take home with her. In several cases, she wanted to pick them up right then. I suggested we finish the tour and then come back and get them. She agreed except for a decorative plate on the living room wall. I carried it for her as we went into the family room where we looked at several other things. She was ready to rest, and I put the plate back in the living room. The tour had distracted her. She was fine although she still believed she was someplace other than her home. I can handle that. I get disturbed when her confusion bothers her. In the end, our home tour made both of us happy.

She was more confused and disturbed after her nap. This time, I suggested we go outside and look at the flowers. Before we walked out of the house, she talked about how much she liked the house and asked me “who lives here.” I told her we did. She was surprised. She must have asked the same question five or six times between then and our getting back in the house fifteen minutes later. She enjoyed the brief (10-15 minutes) time outside and the spring blossoms. She was fine when we went back inside.

It was time for me to prepare dinner, and she rested again. She was confused and worried when I got her up for dinner. I don’t recall the specifics, but she was worried about people she thought were in the house with us. This continued through dinner. Afterward, we went back to the bedroom where I helped her get ready for bed. I found an Andre Rieu concert in Italy. She responded quickly to the music and it and several other videos for the next two hours. She was fine again.

My take on this is that she is comfortable so long as she is engaged in things that she can enjoy. Previously, eating out provided the kind of stimulation that did that. More importantly to me, it provided enjoyment for both of us without my having to create something. Without that, it takes a lot more time to entertain her.

That was our most challenging day of the week. I was relieved when she got in bed and responded happily to the music.