Art Appreciation and Kate

Many times I have given examples of Kate’s interest in “things of beauty.” Most often, this has involved all the “green” (principally trees, but also shrubs) she sees wherever we are, at home or on the road. It also includes the paper doilies she occasionally brings home from one of the restaurants we frequent. She keeps them in several places in the house. About half a dozen are on her bedside table where she enjoys them when she wakes up in the morning.

I have been able to appreciate what she sees in each of these things, but once in a while she surprises me. She did that just before the sitter came yesterday. I was seated across the room from her when I heard her say, “This is beautiful.” I thought she might be talking about the orchid plant on the table next to her. When I looked, I discovered that she was entranced by the remote control for the TV.

For years, I have had a periodic discussion about art with my two email friends from college, Tom Robinson and Bruce Morton. Tom is a retired philosophy professor, and Bruce started on his PhD in philosophy before developing other interests, one of which is photography. Our discussions revolve around the same question. “What is art?” I have always held the position that art, like beauty, is in the eye of the beholder. I know mine is a pretty loose definition, but it seems to work for me given the variety of creations that are officially called art and displayed in the world’s finest museums.

The beauty Kate saw in the cable TV remote was something of a stretch even for me, but I hold to my position. In fact, I think it’s an excellent example. Most, if not all art, seems to possess qualities that involve color, shape, texture, and subject matter. When I took a more careful look at the remote, I began to consider these qualities. I could see how she looked at it as a thing of beauty. It has forty-four individual buttons of different shapes, sizes, and colors and organized around different functions. The mount on which these buttons are located is a reasonably attractive shape and presents a contrasting color for the buttons themselves.

Yes, I think the remote is, or could be called, a work of art. I am sure that it’s designers would agree. They no doubt spent a long time working to make it both functional and attractive . It’s really an iconic symbol of our time. If someone like an Andy Warhol were to have painted a “portrait” of one in much the same way he painted the Campbell soup can, surely many would see if as art. I know I’ve seen stranger things at museums like MOMA in New York.

Of course, I am just playing fun and games with this topic, but there is a serious side to it. That involves the ability of people with dementia to see and appreciate things that most of us overlook. Kate’s life is filled with those. Wherever we go, she sees things that catch her attention. It is usually for something more understandable than a remote control, but also something that I was about to walk by without appreciating. Increasingly, I have come to believe that in the absence of her rational abilities, her ability to sense the world around her has increased to compensate for that loss. There may be a lesson in this for all of us without dementia. It’s a wonderful world, especially when we stop and consider the little things we take for granted. They may be of greater value than we thought.

Reflecting on our Son’s Visit

Since I first informed our son, Kevin, and our daughter, Jesse, of Kate’s diagnosis five years ago, Kevin has made a point of visiting us for long weekends several times a year. I am sure that he has benefitted by making the most of his time with Kate. It has also given me a lift and provided Kate with much pleasure as well.

During his recent visits, her memory of him has faded. That means she hasn’t had the pleasure that accompanies the anticipation of his coming. She does, however, enjoy his presence and connects with him as though she recognizes him as her son in the same way that she relates to me when she doesn’t remember that I’m her husband. She is very at ease with him.

During each visit there are special moments. Their time together on the afternoon of his arrival was one of those. They spent about two hours looking through one of her family photo books. It was the kind of experience I had hoped might occur after I informed both children about Kate’s diagnosis five years ago. I went to the grocery store when they first started. When I returned home, I let them continue this personal time to themselves but joined them a little later.

Of course, life isn’t a constant stream of such moments. Our lives consist of many routine activities that, by themselves, don’t mean anything special. When they are shared with people you love, however,  they are special in their own way. Kevin’s visit was a good example of that. He was here for his high school class reunion, so that was a highlight for him. His time with us, however, was spent going through our activities of daily living.

As Kate’s care partner and Kevin’s father, I am glad that he was able to catch a glimpse of what our lives are like. Since he lives almost 1200 miles from us, it’s hard to know what is really going on. He actively reads this blog, but I felt even that might not fully convey what living with Alzheimer’s means for us.

You might ask why this matters to me. It goes back to the time when my father was caring for my mother who had dementia. The last eight years of my mom’s life, my parents lived right here in town. I was with them a lot, but I didn’t know as much as I should have. I have only realized that as I have cared for Kate. Dad never shared much about his life as a caregiver or Mom’s as a person with dementia. I want our children to have a better understanding of our lives. That was a major factor in my starting the journal that eventually became this blog.

In addition, our son is a care manager. His whole career has involved caregiving. It seems appropriate that he should be fully informed about his parents’ situation. Not surprisingly, he has taken a genuine interest in staying in touch as Kate’s Alzheimer’s has progressed.

Although not in a career that deals specifically with caregiving, our daughter, Jesse, works a lot with seniors and takes a great interest in their lives. I also want her to know about us.

That said, Kevin’s visit was an especially good one because he got to see a very representative snapshot of how Kate is doing and the way in which I care for her. During past visits, her symptoms were much less noticeable. She has changed significantly since he was last here in March. He saw how much her memory has faded. He also was here when she didn’t want to get up in the morning and her desire to rest in the afternoon. What is more important to me is that he could tell how much we still enjoy life and each other.

Because Kate slept late while he was here, he and I had an opportunity to talk about our mutual observations. I am often concerned that my blog posts don’t adequately express what our lives are like. I was pleased to hear him say that he thought there was a pretty good match between what he had read and what he observed for himself.

Since his career is in eldercare, I was eager to hear how he thought our own experience compares to that of other couples living with Alzheimer’s or another form of dementia. My personal impression is that we have been exceedingly fortunate compared to most others. He confirmed my impression.

We were also able to talk about the future. We discussed my plans for a move to a continuing care retirement community in another year and a half. I also told him my own desire to work closely with him as well as Jesse as I get older. My exposure to the caregiving memoirs of children caring for the parents has sensitized me to the problems that can arise. In particular, parents often share very little about things their children will need to know when the parents require help. I would like our relationship to be a smooth one with as few surprises as possible.

Considering all these things, Kevin’s visit was a very good one. His attentiveness both in phone calls and visits has strengthened our relationship and set the stage for a bright future.

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.”

Kate and The 4 A’s of Alzheimer’s

Last night was pizza night for us. When I told Kate I was going to take her out for pizza, she beamed. That was no surprise. She and I always enjoy pizza. Less than an hour later, we were sitting at the restaurant where our server had just delivered it to our table. I served Kate and then myself and said, “You and I love pizza, don’t we?” She gave me a puzzled look and said, “What is pizza?” I said, “That’s what we are eating right now.” She said, “It’s good.” It was just like her first time to have it.

Kate’s vocabulary has been declining for several years, but I am still surprised when she forgets some of the most common words like pizza and black olives. Like everything else, forgetting in this instance doesn’t mean she won’t remember “pizza” the next day, but it is one other sign of the progression of her illness.

She has a related speech problem that has also been getting worse. She wants to say something but can’t recall the word she wants to say. Sometimes she seems to remember the word, but she mispronounces it. The only example that comes to mind at the moment is “shoes.” When she is getting dressed, she asks, “Where are my shows?” She usually recognizes her mispronunciation and tries again. When she still misses, she says, “You know what I mean,” and I usually do. Sometimes I don’t.

These speech problems are collectively referred to as “aphasia” which is common among all forms of dementia. Kate’s good friend, Ellen, has aphasia that is the result of a stroke and several subsequent seizures. Her problem is similar to Kate’s mispronouncing words. The major difference is the severity of the problem and that the words that come out of her mouth are “gibberish” while Kate’s are an approximation of the word she is trying to say.

I haven’t said anything about aphasia before. I only mention it because Kate’s problem is more noticeable now. Her failure to remember “pizza” led me to Google aphasia and dementia. According to the website of the National Aphasia Association it commonly begins as a subtle disorder of language, progressing to a nearly total inability to speak, in its most severe stage. The type or pattern of the language deficit may differ from patient to patient.

As I browsed through the results of my Google search, I ran across the website for verywellhealth.com. It describes the 4 A’s of Alzheimer’s. I read it in an effort to get a better grasp of where I might place Kate on the 7-stage model for the progression of Alzheimer’s. That confirmed my prior belief that she is in Stage 6 and, perhaps, in the latter part of that stage though still not approaching Stage 7. I should add that there are no clear guidelines about the length of the various stages. They can vary widely from one person to another.

The remaining three of the 4 A’s of Alzheimer’s are amnesia, apraxia, and agnosia. Amnesia requires no explanation. That is the loss of memory we most commonly associate with the disease. Kate has clearly experienced that problem, and it is very severe at this point. The other two terms are generally less familiar to those who haven’t dealt with dementia.

Quoting from verywellhealth.com “Apraxia is a deficit in voluntary motor skills.” Kate experiences many of the symptoms. Her biggest problem is walking. She recognizes that and is careful when she walks but occasionally stumbles over things. She also has trouble sitting down and getting up. She is very slow in getting into chairs or booths when we eat out. There are a variety of other signs. For example, she has difficulty holding on to her pills when I hand them to her. That is mostly because she tends to hold her hand sideways, and the pill falls out. It is also a problem eating, especially something like ice cream. The way she holds her fork or spoon is often tilted so that whatever she is trying to eat falls or drips on her lap or clothes. Something else that I am just recognizing is that she doesn’t do a good job washing her hands.

Quoting again from verywellhealth.com, “Agnosia is the impairment of the ability to receive or correctly understand information from the senses of hearing, smell, taste, touch, and vision.” I would say that agnosia is the least of Kate’s current problems. The few signs I see are in her lack of critical ability in differentiating the things she senses. For example, she has a tendency to think all of the musicians she hears are superb. The same is true for the actors and overall performances of the various theatrical events we attend. Even in her perception of the beauty of nature, she sees almost everything as beautiful. We have some plants that are looking rather “bedraggled.” They still look beautiful to her.

Here are the symptoms of Stage 6 of Alzheimer’s from the website of Alzheimer’s.net.

  • Confusion or unawareness of environment and surroundings
  • Inability to recognize faces except for the closest friends and relatives
  • Inability to remember most details of personal history
  • Loss of bladder and bowel control
  • Major personality changes and potential behavior problems
  • The need for assistance with activities of daily living such as toileting and bathing
  • Wandering

Of the seven symptoms, only two are not applicable to Kate, major personality changes and wandering. Bladder and bowel control are not too serious at this point.

So I continue to believe Kate is in Stage 6. I would like to postpone Stage 7 as long as possible, but that is not under my control.

The Interaction of Kate’s and My Moods

Yesterday afternoon I read the following tweet posted by Chuck Fiello Jr. (@OrangeChuck).

When mom isn’t feeling well, she can’t tell me she’s sick anymore so I have to watch for clues. Is she eating less but more tired? Is walking more difficult? When mom eats, she won’t say she’s hungry or full…she just stops eating/slows down or starts to fall asleep.

I replied that I felt the same way about Kate. If you regularly read this blog, you will recall that I have said many times that “When Kate is happy, I am happy.” That doesn’t mean influence of mood moves in only one direction. I make a difference in her mood as well. Recently, I have cited occasions in which I have been able to make her happy with music, family photo books, or simply talking with her gently about her family, our marriage, and/or our children and grandchildren.

It is very clear that there is an interaction of our moods. Once again, the writings of Judy Cornish (@theDAWNmethod) have drawn my attention to something I hadn’t fully appreciated before – the power of caregivers to influence the moods of those for whom we care. More specifically, she has talked about the sensitivity of people with dementia to pick up on the moods of their caregivers. Thus, when a caregiver is feeling tense, frustrated or depressed, that mood can cause their loved ones to feel similarly.

Until day before yesterday, I had never written about ways in which my negative mood and actions led to that same reaction from Kate. Before that, I always reported on ways in which I was able to turn her around if she was confused, frustrated or depressed. That is mostly because I think of myself as being rather even-tempered and upbeat. That wasn’t the case two days ago. I was tense and frustrated as I tried to get her up, dressed, and to lunch before I left her with a sitter so that I could get to the Red Cross on time for a platelet donation.

There was an obvious interaction of our moods. I don’t know exactly why, but she was unusually slow in getting ready even with my help. Looking back, I think she may have been more confused than usual though she didn’t express it verbally. That’s how I normally would recognize it. (Her difficulty understanding how to wash her hands should have been a clue.) I was frustrated and became tense because I was on a time schedule and wanted to follow it, something she can’t do. I tried not to show it, but she can read my emotions quite well. I found that we weren’t working together in the positive way we usually do. Both of us were frustrated. That continued through lunch. As usual, I finished my meal long before Kate. The difference was the tension I experienced in my effort to get home and then to the Red Cross. Nothing I said (the words, that is) should have conveyed the way I was feeling; nevertheless, I suspect she sensed my mood because she was not her happy self.

It wasn’t until the sitter came that she seemed to be more normal. This was a time she didn’t balk when I said I was leaving. She was probably happy to spend some time with the sitter. When I got home, she and Mary were having a good time looking at one of her family photo books. I was happy to see that, and the rest of the day went well.

Yesterday was a more typical day. We had no obligations before 3:00 that afternoon when we had hair appointments. She awoke unusually early, about 7:50. She was a bit groggy, but not in a bad mood. I told her I was glad to see her. She said she was happy to see me as well. We were off to a good start. Of course, we started that way the day before, but it didn’t last.

I thought she just wanted to go to the bathroom but soon discovered that she was ready for the day. She took a shower, and I got her clothes ready for her. When she was finished, she wanted to lie down again. That is not unusual, and since we were under no time pressure, I told her that would be fine. I said, “I’ll be in the kitchen. Just call me if you need me.” About forty-five minutes later, I heard her say, “Hey.” I went back to her and found that she was ready to get up and wanted her clothes. For the past couple of months, I have been laying them out at the foot of the bed on the side that is close to the bathroom. I do that so that she might notice them after her shower. I don’t think she has ever seen them. She asked where they were and I said, “I’ve got them right here.” And pulled them closer to her.

I remained with her the whole time she dressed. She wanted to do everything by herself but needed my help with every item of clothing. In contrast to the previous day, I wasn’t tense or frustrated at all. We had plenty of time and no time constraints. She was even glad for me to help with her hair. That is becoming increasingly frequent. I think she likes it. I know she likes it when I blow dry her hair.

After her morning meds, we were off to Panera arriving before 10:00. We were both relaxed when we got there. She took a few minutes to enjoy the flowers in a couple of large containers beside the door. I didn’t push her to move on any sooner than she wanted, as I did the previous day. We were there an hour while she worked jigsaw puzzles on her iPad, and I checked email on my laptop. Then we stopped by the house for about thirty minutes before going to lunch. We had established a leisurely style and a corresponding relaxed mood that lasted the rest of the day.

Very early after Kate’s diagnosis, I learned that she is very uncomfortable when I rush her. On several occasions, she had panic attacks when we were running late to an event that had a specific start time. That is when I first started experimenting with soothing music to calm her. Music has served us well since that time, but it is only more recently that I have focused on my own mood. I am generally even-tempered so I have thought of my mood as being helpful. I am, however, very sensitive about punctuality. I know she is able to sense the tension I feel when we run late. She has said as much on many occasions when I felt she was misreading how I felt. I thought I was disguising it. Now I am being more thoughtful about my own mood and its impact on Kate. My experience of the past two days shows what a difference mood can make. I know there will always be situations that produce tension for one or both of us, but I will be more mindful of its impact and do my best to control it more effectively.

Taking Stock of Where We Are

As my recent posts suggest, Kate is on a serious decline. Her rational ability to remember names and places is extremely poor although some things jog her memory. Her photo books and my re-telling stories of family, our marriage, and her own personal experiences continue to be helpful. I don’t believe that she ever remembers on her own that she was an English teacher, school librarian, or church librarian. Even when I mention her degrees and her teaching, she is surprised. She was a volunteer church librarian for 19 years. She does recall that if I give her a little information.

I’ve noticed in recent weeks that she does not ask my name or hers as often as she had done previously. It still comes up, but it appears that she has reached something of a comfort level when she doesn’t remember. Yesterday at lunch, I mentioned something about our having celebrated our anniversary. She asked how many years. I told her, and we talked about how good our life together has been. She can’t recall any specifics on her own, but she talked about our having done so many things. I shifted the conversation and told her she was going to get her hair cut at 3:00. I mentioned the name of woman who cuts our hair. Then she asked her last name. I told her. She had difficulty getting it and asked me to repeat it several times. She said, “I just wanted to know in case I need to introduce her to someone.” I said, “I don’t think you have to worry about having to do that.” I paused and added, “But you might want to remember my name.” She looked as though she hadn’t thought about that and said, “What is your name? I really should know that.” I told her my name. Then she asked her own. She didn’t give any sign of being bothered by not knowing or acknowledging that she didn’t know.

I don’t know that she is actually sleeping any more than in the past, but she wants to rest more often. Resting right after we get home from lunch is common now. Frequently she lies down on the sofa while I sit in a chair across from her. It looks like she spends most of her time pulling her fingers through her hair. She does this every night when she gets in bed. She refers to it as “working” and believes she is doing something good for her hair.

While her rational abilities dwindle, her intuitive abilities shine. Almost every time she passes through the family room, she looks at the flowers blooming on the patio and often asks me to come over to look with her. In the past few weeks, it seems like she has gotten as much pleasure from the flowers and trees around town and our neighborhood as she does from music. I am happy to see that. She has also been looking at a garden magazine I got her a couple of months ago. She wasn’t drawn to it then.

She is more emotional about everything. That includes both happy and sad things. She gets teary far more often. I am more careful about telling her of any news that relates to death. She gets very sad. She also responds more negatively to things that bother her. That includes the heat, sudden noises, and music she hears at some of the restaurants we visit.

She still has moments when she wants to do things for herself. I am glad when that happens. Those moments are becoming fewer, however. When getting dressed, she sometimes asserts her independence and then needs to call on me for help. I feel sorry for her when that happens.

I wonder if this desire for independence is related to something else she has done a couple of times recently. At lunch the other day She said she was going to be taking a trip. I asked where. She said, “I haven’t decided yet.” I asked who she was going with. She said, “I’m not sure.”

Coming back from dinner last week, Kate said, “I’m going to pay attention because I’m thinking about coming out this way sometime. I might bring someone with me.” Another night, when I turned on the car’s air conditioner, she said, “I should be paying attention to this.” If I thought she would have any idea of how to start my car, I might be worried.

What seems most amazing to me is that we still enjoy life and each other. Yesterday was a particularly good day. We didn’t do anything special. We just enjoyed being together. I don’t want these experiences to end. If they do, I will try to remember the good times we have had. We are so fortunate.

Feeling Good About My Decision to Move

Tomorrow it will be two weeks since I made a deposit on an apartment in a local continuing care retirement community. That gives me another two weeks before I either have to back out and get my deposit back or move forward with a full down payment. At this point, I still feel good about my decision and doubt seriously that I will change my mind before the down payment is due.

For ten years, I taught a Sunday school class of seniors that were mostly ten or more years older than I. During that time quite a number contemplated such a move and found it a hard one to make. I understand that, but I have felt quite differently about it. When Kate was first diagnosed, I had my personal preferences regarding her care. I wanted to keep her at home, but I also felt I should keep all my options open. I have not changed that position. After all, there was, and still is, no way I could predict what our circumstances might be like in the years ahead.

Kate’s diagnosis changed a lot of my thinking. The first was that I immediately began to reinterpret everything she was doing. I finally understood her behavior was result of her Alzheimer’s. That made me significantly more understanding. It also placed her care at the center of my life. That doesn’t mean that I gave up doing all the things l like, but it did mean that everything I have considered doing since then has taken her care into account. Until the past six to eight months, I’ve been able to do that by focusing on things we can do together and engaging a sitter to give me twelve hours a week for myself. As she has declined, I’ve been increasingly concerned about what would happen to her if something happened to me. I don’t have any existing health issues, but Kate and I are at about the same as our parents when they began to show signs of diminished health.

Thus, my decision to explore a CCRC was heavily motivated by a desire to establish a plan for Kate should I experience a major health problem. I am happy to say that I immediately felt better when I put down a deposit. Even though the new building won’t be ready for almost two years, we will have access to other benefits of the community like the adult day care, assisted living, or memory care. In other words, my decision has opened up another set of options that were not previously in place.

But that isn’t the only reason I feel comfortable. For many years, Kate and I have felt we wanted to make life as easy as possible for our children as we age. I believe taking this step accomplishes just that. We had already taken some steps to make them aware of what they would need to know if one or both of us were to die. They have all of our financial, medical, and legal information as well as the contact information they would need. I feel that moving to a CCRC would be an added measure of security for us and for them.

There are several other things that were also relevant. I had already decided I didn’t want to remain in our house after Kate is gone. I don’t enjoy all the things that are required to care for a house and lawn. I can hear my friends saying, “Wait a minute, don’t you already have a housekeeper and people who take care of the yard?” That is true, but they don’t do everything that needs to be done. Besides, I still have to manage everything. I would rather have someone else do that for me even if it isn’t done exactly as I would like it or on my time table. My dad lived to be 100 and was active until his stroke at 96. I, too, want to be active. Having an apartment rather than a house will allow me to focus on other priorities.

I doubt that I would have made the decision if there had been an available apartment when I sought information. As it is, I have time to get ready. It gives me two years to close the home we have lived in for twenty-two years. The fact that the building is two years away also gives me plenty of time to reconsider my decision. I feel secure, but not locked in.

Reflecting on Ken and Virginia’s Visit

Visits with friends and family have always been important to Kate and me. That’s true for most people; however, they have played a more significant role for us since Kate’s diagnosis. I’ve been especially mindful of that during Ken and Virginia’s visit with us the past few days. I hated to see them go. The fact that Ken was diagnosed with Alzheimer’s almost five and a half years ago has heavily influenced our relationship. It’s not that we talk a lot about dementia itself. We don’t do that at all in Kate’s presence since she no longer remembers that she has the disease. I don’t see any reason to tell her. We do, however, have such conversations before she gets up and when she rests.

What is more important is that they have such a clear understanding of what this journey is like. They may have picked up a few things from reading this blog, but most of that comes from their own personal experiences. That makes a difference in our interaction when we are together. When they are here, I have a feeling the three of us are partners as caregivers for Kate. They understand how to relate to her in a way that is difficult for just anyone else to do. I feel a load is taken from me. I still get her up and see that she is dressed and ready for the day, but when we are together, she interacts with the rest of us. The fact that we share a common set of experiences as part of the same family is also important. That expands the range of topics we can talk about in ways that couldn’t happen with even our closest friends.

Ken himself has taken steps to remain close to his sister. One of the best things he has done is to have given her the “Big Sister Album.” With 140 pages of photos covering their lives from Kate’s birth to January 2018, it has provided countless moments of pleasure for Kate since he gave it to her a year ago. We keep in on a coffee table in our family room. The cover photo of her and Ken when they were about four and two catches her eye almost every day.

Because it contains so many memories of their lives including their extended families, Virginia and I have enjoyed letting them take some time just to themselves to go through it. They looked at it for almost an hour yesterday afternoon. After dinner last night, they went through it again. This time Virginia sat across from them. When they had finished, Kate put it down. Then Ken said something about the cover picture. She didn’t know what he was talking about and showed her. She didn’t remember who the children were. Ken told her. She seemed confused about Ken in the photo and Ken sitting beside her. It didn’t appear that she remembered that they are the same person. As they moved to other photos, she did refer to Ken by name. I was never quite sure what she understood and didn’t.

As Kate continues to decline, there is another aspect to visits like this. Will this be their last visit together? None of us expects this to be the last, but we don’t know. Ken and Virginia are planning to return in the fall. How will Kate be getting along then? She won’t be the same . How will that affect our time together? Like so much of this journey, we just don’t know. All four of us are living in the moment. One step at a time. That has served us well thus far. I trust that it will in the future. In the meantime, I will savor the memories of a very pleasant visit. I wish Kate could do the same, but she enjoyed the moments.