Update on In-Home Care

It has been two years since I began in-home care for Kate. I spent about eight or nine months considering the move. Then I agonized over how to tell her. Because of her memory problem, I decided there was no reason to bring up the subject too far ahead of time. I told her a few minutes before the sitter arrived for her first visit. She asked why I was having someone stay with her. I told her I was feeling uneasy about leaving her alone and that I would feel better if someone were with her. She said, “Okay.” That was it. I was surprised at how well it went.

We started with sitters three afternoons a week (Monday, Wednesday, and Friday) four hours each visit. We continue that same schedule two years later. Fortunately, we have kept the same sitter on Wednesday and Friday. We have had three different sitters on Monday. Each one has worked pretty well although I have a preference for the one who comes twice a week and have felt that way from the beginning.

Kate and I have both adjusted well to the sitters themselves as well as the schedule, but we have responded differently. At first, Kate seemed to do pretty well. She may have even enjoyed having the companionship. As she became increasingly dependent on me, she also became more insecure about my leaving her. She would act surprised (I’m sure she really was) when I told her I was leaving and would say something like “You’re leaving? Why don’t you stay with us.” That left me to explain why I needed to go. She always gave in, but she also looked disappointed. More recently, even though she is more dependent on me now, she has been very accepting of the sitter. She often expresses enthusiasm when they walk in. In the past 2-3 weeks, she has shown no sign of disappointment that I am leaving. Of course, that makes me happy. I just hope it continues.

I have adapted differently than Kate. From the outset, I hated to leave her. Over time, however, I have been more comfortable. That is especially true recently as Kate has responded more positively, but I still feel a little uneasy when I leave her. My own experience has made me think about my dad who never wanted to have someone stay with my mom. My brother and I tried to get him to accept help and succeeded in getting him to try it. He let her go after one or two visits.

Despite my feelings, I have continued because I felt it was the right thing to do. I believe it is important for me to keep up with some of my outside activities. My plan for Kate’s care has always included bringing in help as needed. I am actually surprised that I have not felt the need to increase the number of days we have a sitter. In many cases, caregivers don’t have paid help because of the expense. In our case, we have long-term care insurance that will pay up to eight hours a day seven days a week. The only reason I don’t take advantage of that is my desire to spend as much time with Kate as I can. I know that we are approaching a time when I may not be able to take her out with me as we have done before. I have a stronger desire to enjoy all the quality time we have left than to use the insurance just because we have it.

I think I am in a good position. My intent is to continue monitoring our needs and increase her in-home care as needed.

A Happy Moment This Morning

For the second day in a row Kate was up early. Yesterday she was ready to get up around 9:00. Today it was only 7:30. This was one of those mornings she clearly did not realize she was in her own home or my name or relationship. Perhaps because she didn’t know who I was, she wasn’t quite as eager to have my help. Several times when I tried to help, she said (in an unflattering way), “You think you know how to do everything.”

She started warming up to me as I helped her dress. Entering the family room provided the catalyst she needed to feel better about the day. I walked with her around the room as we looked at the flowers inside and out. I told her I wanted to show her something and walked her to a photo of our son when he was about eight. She always loves this picture. Today was no exception. When she asked who he was, I told her he was our son. She reacted to the word “our” and said, “No.” I said, “Well, he is your son.” That was better. I also showed her a picture of her father.

From there we went into the kitchen where I had set out her meds. After she had taken them, she noticed a card on the island and asked what it was. It was a card from her P.E.O. sisters. I had shown it to her last night, but she had forgotten. I read it to her along with the handwritten message inside. She was touched, and tears filled her eyes. She loved the beauty of the cover page that had three hearts on it as well as the tender message itself and asked if she could take it with us. I told her that would be fine. It was still a few minutes before we left, but she held the card in her hand and admired it. She asked several other times if she could take it with us.

Once we were in the car, she held it against her breast and said, “I’m going to keep this forever.” She kept talking about how beautiful it was. As we walked from the car to Panera, she held it carefully in her hand and told me once again how much she liked it. I said, “I love you.” She said, “You know what I think. You’re a good guy, and I think I’ll learn to love you too.”

We took our table at Panera, and  she carefully placed the card standing upright so that she could look at it while eating her muffin and working on her iPad. A short time later she picked up the card and looked at it again. Knowing she wouldn’t be able to read the note, I asked if she would like me to read it for her. She did. When I read “Dear Kate,” she said, “How did they know my name?” I explained that she had been a member for many years and had served as president. She had no memory of that at all.

Incidentally, the blueberry muffin was also a big hit this morning. It was like this was the first time she had every had one. Thirty minutes after finishing it, she wanted something else. I asked if another muffin would be all right. She beamed. Thus far, the morning has been just another Happy Moment of many that she and I experience. She remembers very little, but she is not “suffering.”

Noticing the Signs of Dementia

Earlier this week I saw the following tweet from Dr. Oz.

I recently found out that my mom, Suna, has Alzheimer’s disease. Hearing the official diagnosis was devastating. But just as painful for me was the realization that the signs were there all along. I had just been overlooking them.

His tweet caught my attention because I believe his experience is very common – and with good reason. My mom also had dementia, but I have no idea how long she had experienced the early signs. She and my dad lived in South Florida while Kate and I lived here in Knoxville. They made their decision to move here in 1993. At the time I knew they were experiencing aging issues common to people who are eighty, but it never crossed my mind to suspect that she might have dementia. I don’t even recall the time that I recognized it for myself. I know it was earlier than 1998 when her doctor’s social worker gave us the results of her routine memory test. She was very careful in the way she told my dad and me. She didn’t want to shock us. She needn’t have worried. We were not surprised and told her we were aware of the problem.

She died in November 2002, just four years after the diagnosis. Looking back, and given what I know now, I believe she was at Stage 7 of the 7-stage model of the progression of Alzheimer’s at least a year or two before her death. I am sure that Dad must have known the problem before their decision to leave Florida even if he didn’t recognize it as dementia. He never said a word to me before the diagnosis and very little afterwards. What I knew came only from my personal observations. I had arranged for their purchase of a condo that was near our home, and was with them a lot. Yet, when the doctor suggested it was time for hospice a few months before her death, I was surprised. How could I have been so blind?

I have a better understanding now that Kate and I have lived with the disease 13 years since we noticed her first signs. I believe there are two interacting reasons. First, it makes a big difference to be with a person for an extended period of time and even better if you live with the person. That is particularly true in the early stages when so much of a person’s behavior is normal. Second, changes are gradual so that it is difficult to recognize them until the behavior becomes obviously abnormal.

I am pretty sure that I missed the early signs of my mother’s dementia because I wasn’t with them very often. They were still in Florida. When they moved here, I wasn’t looking for them and still wasn’t around her enough to see anything but a memory problem. I attributed that to aging. I recall my mom’s saying, “I don’t know what’s wrong with me. I can’t remember anything anymore.” My standard answer, even after the diagnosis, was “Everyone forgets things now and then. That’s especially true as we get older.” Sometime over the two or three years after their move to Knoxville, I could tell that her problem was more serious than simple aging.

Kate recognized her Alzheimer’s symptoms before I did. For several years, she periodically said, “I think I have Alzheimer’s.” I responded the way I had with my mother and suggested it was part of aging. Over time, I began to realize she was right. That was about five or six years after the first signs.

I have heard others say they were as surprised as I when medical authorities suggested hospice for their loved ones. I believe that, too, is also understandable. It is easy to adapt to patterns of behavior, and not be sensitive to the progression of the illness. My mom had been uncommunicative for a period of time before the doctor mentioned hospice, and I didn’t notice any signs of the end. The doctor, a gerontologist, could see what I couldn’t.

I am also reminded of the passing of Kate’s mother. The day before she died neither Kate nor I had any thoughts about her having only a day to live; however, the caregiver on duty that morning told us she had begun the process of dying. By that afternoon, we could see that she was right. She died just after 8:00 the next morning.

I see how Dr. Oz failed to recognize his own mother’s dementia. It’s not that hard to miss unless you are around the person a lot.

I should make one other point. It makes perfectly good sense for people in their seventies or older to think that their memory problems are normal. That is usually correct, but about one in every seven people over the age of seventy has some form of dementia.

I did not sense a great need to get an official diagnosis for Kate. I knew there wasn’t a cure and felt that it would not change anything we were going to do; however, once we had the diagnosis, we became much more intentional in making the most of our time together. I know that has paid off for us. We are still living well almost nine years later.

Just Wondering

Yesterday morning I was happy to see Kate smile when I woke her for lunch. I told her it made my day to see that smile, and she beamed. Then I told her I would like to take her to lunch. As she started to get out of bed, she wanted to do it on her own without any help from me. Once she was on her feet, she had second thoughts. She extended her hand for me to guide her to the bathroom. It was the kind of moment I felt as though she knew my name and our relationship. Then she asked who I was. I gave her my name and said that I was her husband. She didn’t believe I was her husband, and I said, “Well, let’s say we are friends, very good friends.” She liked that. The balance of the day there were moments when I was sure that she knew me as her husband but many when she did not. She responded to me the same way regardless. In addition, she continued her expressions of appreciation for my taking care of her.

As I reflect on the day, I would say it was a very good day. She was just as confused as ever, but she was happy. What’s more I was happy along with her. I know, however, that many people would not understand this. For example, before Kate got up yesterday, I made up a Rotary meeting I had missed two weeks ago. As I watched from my computer, one of the club members gave an update on several older members and noted that one of them was “suffering with Alzheimer’s.” That is a frequently used way to say that  someone is “living with Alzheimer’s” or simply “has Alzheimer’s.” I know the speaker is probably not in touch with how the “Alzheimer’s community” (all people with dementia as well as those who are caregivers or professionals in the field) is beginning to talk about the way we refer to the disease. Many of those with dementia as well as professionals advocate our dropping the word “suffering” when we say that someone has the disease because it can be very misleading.

Speaking for myself, I find “suffering” not to be a good descriptor of Kate’s experience. There is no denying the changes in our lives that I wish hadn’t happened. Most of all I hate those moments of anxiety, fear, or panic that she has sometimes experienced. I feel similarly about all the moments when she recognizes that “something is wrong” with her. I wish she had never had Alzheimer’s, but that is clearly out of my hands.

The only thing that she and I can do is make the best of it, and I believe we have done that. We have kept our focus on what I call our Happy Moments. We take great satisfaction in them and try to put aside the sad ones; therefore, describing our lives as “suffering” doesn’t seem accurate at all. I do, however, wonder about the future. I’m not at all sure exactly what it holds for Kate or how I will respond. I am encouraged by the fact that each of us has been able to adapt thus far. I also know that my father managed well and took care of my mother to the end. He experienced a good bit of stress, but my load is and will continue to be easier than his because I have help and plan to increase it as needed.

Even if this last stage brings with it more sadness than happiness, I believe that saying someone is suffering from Alzheimer’s is not an accurate generalization. I think the emphasis on suffering can be discouraging to those who are recently diagnosed at a time when they need encouragement. The truth is that it is possible for a couple to live happily for years before they encounter the most challenging aspects of the disease. Based on the accounts written by other caregivers, I suspect that some of them may have received the diagnosis late in the disease. That left them with a shorter period of the “almost normal” years. During those years they no doubt realized they were happy but not that they were living happily with Alzheimer’s.

Lest I be guilty of making my own inaccurate generalizations, I should acknowledge that there are a variety of different types of dementia. Each can have different symptoms and time frames. In addition, there are differences from person to person within each type. I suspect suffering with dementia can occur among all types, but I think it is not usually an accurate description of the whole journey for those living with dementia. Furthermore, there are individual differences among caregivers in terms of how we perceive our situations. I admit to being the kind of person who sees the glass as “half-full” rather than “half-empty.”

A Successful Evening at Casa Bella with a Emotional Finale

Last night was Opera Thursday at Casa Bella. As I have said before, their music nights have been very important to us both from an entertainment standpoint as well as socially. Recently, however, I have been concerned because we often have six and sometimes eight people at our table. Large groups are difficult for Kate. She does much better when we are with one other couple. That has led me to think about the possibility of our moving to a table by ourselves. I haven’t mentioned that to the owner of the restaurant, and the last time we were there everything was fine. Last night was even better.

Our seating arrangement varies a little from night to night depending on the number of people at the table. The men have followed an unspoken rule that our wives sit on the side of the table facing the singers while we have our backs to them. I started to seat Kate where she sits most often. She asked where I was going to sit. I pointed to the seat across from hers and said, “I’ll be right there across from you.” She said, “I want you to sit beside me.” This is in keeping with her increasing insecurity and desire to be with me and to hold my hand. Not wanting to take the seat of the woman who would be joining us later, I helped her into the seat beside me on the other side of the table. That meant she couldn’t easily see the singers, I felt the priority was being closer together. That turned out to be a good thing for two reasons.

First, the son of the couple we always sit with was there. He took a seat at the end of the table with his mother on his right and Kate on his left. His father took the seat across from me. Although Kate can never remember the couple, she always feels comfortable with them. They are always able to put her at ease. This made for a good social experience for her.

The second reason the seating worked out well related to Kate’s response to the music. As I have noted a number of times, her emotions are exaggerated more than in the past. The music was especially good, and Kate responded accordingly. Most of the evening she didn’t respond audibly the way she sometimes does, but she was visibly moved.

The most dramatic moment came during the last song of the last set when they often sing a few ballads or showtunes. Last night they ended with “For Good” from Wicked. In the musical, this is a duet sung by Glinda and Elphaba who tell each other their lives have been changed for good by the other.

Although Kate has difficulty following conversations, I am often surprised when she responds to specific words or phrases in songs. She picks up far more than I expect. In this case, I believe she was moved by both the music and the lyrics. She began to whimper very soon and held my hand throughout the song. During the last couple of stanzas, she was moved even more. As the song ended, she put her head on my shoulder and her arm around my neck and broke into a cry. She wasn’t loud, but people nearby would have easily noticed. As we hugged, I saw a couple at the table beside us who were looking on. They are aware of Kate’s diagnosis and have been very compassionate in their response to her. When the program ended, they came over and gave her a hug.

For me it was also an emotional moment. I can’t know exactly what she was thinking. I do know that she recognizes she has “a problem” and that she needs me. I know she understands certain words and phrases from songs. Did she understand the words of the song and draw a connection to our relationship? Was she simply moved by the music and not the lyrics? I only know it was an very emotional moment.

A Day of Confusion, Not “Knowing,” and Insecurity

About 4:15 yesterday morning, Kate moved over very close to me. Then she took my hand and held it gently. I often wonder if she knows who I am when she wakes in the middle of the night. Neither of us said anything, but this was a time when I felt sure that she did.

I was wide awake and decided to get up at 4:45. After finishing in the bathroom, I walked toward my closet when I heard her say, “Hey.” I walked over to the bed and could see that she was having one of her moments of confusion. I asked if I could help her. She said, “I don’t know.” I said, “I bet I can. Were you wondering where you are?” She told me she was. I explained that we were at home. She had trouble believing that. I didn’t push it. She asked my name and then hers. She said, “Who are you?” I told her I was her husband. This was one of those times when she didn’t express any doubt or say, “How did that happen?” I told her we had been happily married for fifty-six years and that I loved her. She said she loved me too.

We talked a little longer, and I asked again if there were anything specific I could help her with. She wanted to go to the bathroom. As she got out of bed, she was shaking a little. She held my hand and said, “I’m sure glad I have you.” I said, “And I’m glad I have you.” When she finished in the bathroom, she said, “What now?” I told her it was early and I thought she should go back to bed. After walking her to bed, I was about to ask if she would like me to stay with her when she asked me to stay. We talked about fifteen minutes. During that time, she was very insecure and expressed her feelings about feeling better with me. Then she said, “I’m all right now. You can go.” I told her to call me if she needed me. She said, “What should I say?” I told her she could just say, “Hey.” She wanted to know my name. When I told her, she said, “Okay, Mr. Richard.”

We had a nice relaxing day. It was Labor Day. My Rotary club did not meet, and I gave the sitter the day off. Most of our usual restaurants were closed, so we went to one we like but rarely visit. Then we came back home for the afternoon. Kate was very tired and rested for at least two hours but did not go to sleep. When she sat up, I asked if she would like to go someplace like Barnes & Noble. She said she would rather stay at home. That is now becoming a more established pattern. It doesn’t seem that long ago that we went out almost every afternoon. That is another change that has cut down on our social contact. That means our eating out is becoming more important for us.

Since she didn’t want to leave the house, I suggested we look at an old photo album I had retrieved from a closet the day before. It has pictures of our children at the time of our son’s birth. It had been a very long time (years) since we had looked at them. We spent another hour with it. Kate loved every minute. As she has done with the other family photo books, Kate can never make the associations that would help her guess who the people are. For example, after I identified Jesse and Kevin in one photograph and pointed out Jesse in the following picture, she didn’t know who the boy was even when they were dressed in the same clothes as the previous photo. I don’t mean that this happens every time, but it is very common.

Before leaving for dinner, she said something that reinforces my belief that she recognizes that she has a significant “problem” and depends on me. She struggled with how to say it and ended up saying something like, “I know my problem is not that serious, but I appreciate your taking such good care of me.”

Throughout the entire day she seemed very insecure. She expressed that by her thanking me for taking care of her and asking what she should do somewhat more than during a typical day. As I have said before, her neediness and expressions of appreciation make me more determined to keep her happy and see that the rest of her life goes as smoothly as it can.

Thinking About Stress: Part 2

In yesterday’s post on stress, I discussed two aspects of caregiving that I believe influence the degree of stress that I and other caregivers experience. My intention was to convey why I believe my stress is less than that of other caregivers. In my earlier post, I suggested that my caregiving load has been comparatively light and that my prior caregiving experience as well as my personal characteristics have enabled me to cope with the challenges I have faced. Today I focus on the ways in which I have been able to minimize stress. I am fortunate to have a variety of ways to address the problem, and I depend on all of them.

Binging on music and eating out are unquestionably my best ways to manage stress. I have written extensively about both of these and won’t say more about them here, but they have been great therapy for Kate as well as for me. They have provided us with pleasure and kept us socially engaged. We are fortunate to share these interests. That is not true for every couple.

Exercise has been a part of my life for a long time. Although caregiving has changed that somewhat, it still is an important part of my life. As I became less comfortable leaving Kate alone, I engaged a sitter three afternoons a week so that I could continue going to the Y as well as doing other things cited below. I reduced the amount of time spent at the Y but added a 40-minute walk every morning.

Reading is another of my pleasures. Before my retirement, I focused on my career. Much of my reading then was influenced by my professional interests Since then I have broadened my reading substantially. After Kate’s diagnosis, I opened an account with Audible and get two books a month. I listen to books while I am at the Y and when I walk in the morning. I like being able to accomplish two tasks at one time. I also read some on my iPad. I wanted to learn more about the experiences of other caregivers and began to read books they as well as people with dementia have written. I have read over thirty of these.

I have participated in voluntary organizations for most of my life. As a caregiver, I have had to reduce that, but I fit some in my schedule. I’ve been a Rotarian for 36 years. I currently co-chair our CART Committee that collects weekly contributions from our membership for Alzheimer’s research. I have been active with United Way for 35 years and serve on two of their committees. Although I no longer serve on the board, I maintain contact with a local hospital foundation that raises funds for the area’s largest hospital system. Until three years ago, I was still active in our church. Now my only involvement is serving on a committee that calls church members on their birthdays. The pastoral staff has remained in contact with me. Kate and I have lunched with three of the pastors, most frequently with our senior pastor with whom we had such a good experience this past week. He was the first person to approach me with a concern about Kate. That was July 2011, six months after her diagnosis. They have definitely stayed in touch.

I also meet with friends for coffee. Mark Harrington and I get together each Friday afternoon for over an hour at Starbucks. I also have a church friend I meet at Panera about once a month.

Email contacts have also been important. In particular, I am in daily contact with two college friends. In the past, we could easily have over twenty messages a day. Our correspondence not as frequent now, but rarely does a day go by without several messages.

For many years, we have had good friends in Nashville. We have a long history of daytrips to visit friends. We have continued those visits since Kate’s diagnosis. One of those is Kate’s closest friend who is now in memory care following a stroke four years ago. We try to visit with her every four or five weeks. In connection with that visit, we often get together with another of our Nashville friends.

I launched this blog and opened a Twitter account in January 2018. These have opened up an entirely new avenue for minimizing stress. They have helped in two ways. First, they provide new activities that I can do right from home. Second, they have enabled me to make new online friends that have been very supportive. I have learned much from them.

All of these activities have kept me active and provided different ways for me to be socially engaged. I expect my stress is likely to increase in the future. That’s because Kate is requiring more personal care than in the past. Up until now, I have had sufficient time for the personal things I like to do. In addition, most of our time together is spent doing things we both enjoy.

The major part of my stress doesn’t arise from my direct caregiving responsibilities. It comes from the sadness I feel as I watch Kate’s decline. Although I can’t predict the timing or all the specific things we are likely to encounter, I know all too well where we are headed. As we move forward, I intend to do what I have done in the past. I’ll take great pleasure in our Happy Moments and enjoy the satisfaction of keeping her as happy and secure as I can. I feel it’s a privilege to walk with her through this last chapter of her life.

Thinking about Stress: Part 1

There is no question that caring for a loved one can, and often does, cause a good deal of stress. Judging by the frequency with which people remind me to take care of myself, caregiver stress seems to be common knowledge. I find, however, that the degree of stress can vary tremendously from one person to another. I don’t think that variation is well understood.

That leads me to a favorite topic of mine: generalizations. All of us depend heavily on them. They are often very useful; however, applying a general pattern to a specific situation (in this case, the stress of an individual caregiver) calls for more detailed information about the specific caregiver and her/his situation.

I usually think about three major elements that play a role in stress experienced by a specific caregiver like myself. One is the sources of stress. Some things produce a lot of stress. Others produce very little. A second category is the personal experience and characteristics  of the caregiver. Some people find it difficult to deal with stress. Others find it less so. The third category involves the things a caregiver can do to reduce or minimize stress. In today’s post and the one following, I would like to comment on how those three come together in my particular case.

As Kate’s care partner I have experienced stress, and that stress has increased as her Alzheimer’s has progressed. As I look to the future, I believe that stress will likely increase. On the other hand, stress seems to be less of a problem for me than for many others. I say that based on reading a variety of online forums for caregivers as well as over thirty books by caregivers who have provided vivid accounts of their experiences. When I consider what they have been through, I see good reasons for my feeling less stress, and the three elements I mentioned above provide an explanation. In this post, I will deal with two of them.

Sources of Stress

All stressors are not equal. The ones I confront are minimal compared to those of other caregivers. The load I carry is simply not as great as that of theirs.

In the first place, I was at a point in my career when I could retire to devote my attention to Kate. Many caregivers have a variety of other responsibilities that also demand their attention. I am especially mindful of spouses who have to continue working to pay the bills and can’t afford to hire someone to help. There are many women who are not only working and caring for one or both parents but also care for children. I am familiar with their stories and recognize the struggles they are facing.

Kate has also been easier to care for than many other people with dementia. It is true that she has been somewhat more irritable, especially as the disease has progressed, but that pales in comparison to other situations with which I am familiar.

In addition, neither Kate nor I has had to deal with any other serious illnesses. That is unusual for people our age. We are approaching eighty, and Alzheimer’s is the only significant health issue for us. I have been sensitized to this fact when Kate has had a cold. That creates an extra demand for me, but it is nothing compared to other chronic illnesses.

Personal Experience/Characteristics of the Caregiver

Many caregivers for a person with dementia have little experience with the disease. They begin from scratch. Often, they are children caring for one or both parents. They face a steep learning curve that calls for knowledge of the disease itself while adjusting to the new role of parent care. This has to be incredibly stressful.

Kate and I had been caring for our parents and my father’s significant other for twenty-two years at the time of her diagnosis. Her father had a stroke and her mother vascular dementia. My mother had an unspecified form of dementia; my dad’s significant other had vascular dementia, and my father had a stroke. I feel as though everything I had learned from those experiences prepared me to care for Kate.

I also believe my personality makes caregiving easier for me than for others. I can’t take credit for that. I thank my dad. He was the same way. He kept his sense of humor and focused on everything he could see as positive and minimized the negative. He was a problem solver in his work and in his personal life. He had faith there was a solution to every problem he encountered. I think I am a bit more realistic than he was, but I recognize many ways in which he and I are similar.

If it were only the things I have outlined above, I believe my stress would have been less than that of other caregivers, but there is more. It involves the variety of ways in which I have been able to minimize my stress. I’ll save that for another day.

This Morning’s Experience of “Knowing” but “Not Knowing”

Some time ago (February 18, 2018) I wrote a post entitled “What does it mean to know someone?” The answer to that question is much more complex than it sounds. I see that all the time with Kate. Like other care partners, I am very sensitive to those times when Kate knows or seems not to know me. I tend to put her level of knowing in four categories.

  1. She knows me in all the traditional ways a wife knows her husband. She knows my name, that I am her husband, and has a feeling of affection/kinship for me.
  2. She knows either my name or that I am her husband (usually the latter) and has a feeling of affection/kinship for me.
  3. She knows neither my name nor that I am her husband, but has a feeling that I am someone familiar and whom she trusts.
  4. She has no idea who I am.

I can’t put an accurate estimate on the frequency with which she experiences these categories. I do know that Category 4 is the least frequent by far. There have only been a handful of times in which she has had no idea who I am. Category 1 occurs infrequently but much more than Category 4.

That leaves the other two categories that occur most often. I’m not sure, but I think we are at a time when Category 3 is, or is becoming, the most common. Most of the time she knows me as someone familiar and whom she trusts.

I know there must be caregivers who find it disturbing when their loved ones no longer remember their names or relationships, but I find that leaves me with the most important connection that we have and have always had. Like most other couples we were attracted to each other from our first date, perhaps even before or there might not have been a first date. After all our experiences and changes in our lives, this sense remains. I am optimistic that it will continue though I recognize that, too, may give way to this disease called Alzheimer’s. In the meantime, I am going to relish moments like this morning. In the scheme of things, it wasn’t significant, but it meant something to me.

I was just finishing breakfast when I noticed on the video cam that Kate was about to get up to go to the bathroom. I went to the bedroom and could tell this was a morning when she was confused. Unlike other times, she seemed very normal in terms of her emotion. She showed no signs of anxiety or fear though I feel sure she was feeling anxiety. In a very natural tone of voice she said, “What’s going on?” I said, “Well, you just woke up, and you are in your own house. That’s your back yard that you like to look out on each morning.” She said she recognized it.

Then she said, “What now?” I said, “I think you were about to get up to go to the bathroom.” She said, “I think I was. Where is it?” I said, “Let me show you.” I took her hand. She held it all the way. That’s not something she always does. As we walked, she said, “Who are you?” I said, “I am Richard, and I am your husband.” She didn’t act surprised nor elated. She just accepted that as a label for me.

After using the toilet and washing her hands, she said, “I wish I could just be with you and nobody else.” I said, “You are. This is our house, and there’s nobody else her but us.” She seemed to like that but didn’t express any special emotion at all. She said, “What now?” I said, “You usually like to go back to bed for a while.” She said that is what she wanted to do. She said, “Who are you?” I told her again and noticed that she seemed just a bit uneasy and asked, “Would you like for me to stay in here with you?” She did, and I told her I would get my laptop and come back to the room. She said, “Don’t leave me. Take me with you.” I told her I would; however, by the time we reached the end of the bed, she had forgotten and walked toward her side of the bed.

After she was in bed, I asked if she would like me to stay in the room with her. She did. I remained with her. She fell asleep. Thirty minutes later I came back to the kitchen (my office) to write this post.

This was one of those times she didn’t know my name or our relationship, but she had a good feeling about me and trusted me. That is what is most important to me. It reinforces my desire to keep her secure and happy, and she almost always is.