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Making Plans

We face important decisions at every stage of our lives. It’s no surprise that seniors confront them as well. Some decisions are more significant than others. For example, when should I retire? What will I do after retirement? Sooner or later (we always hope the latter) we face things like giving up driving. That’s a big one. Few people want that. It’s a critical sign that we are giving up some of our independence.

An even bigger one is where we live as we age. It’s no secret that most of us want to continue living in our own homes. As our population ages, there is a growing effort to support seniors in their effort to accomplish just that. As with so many things, finances play a key role in such decisions. The combination of personal preference and finances accounts for the fact that most seniors do live in their own homes. At the same time, there are increasing options available for those who might feel the need to do otherwise.

I will turn 79 one month from today. That was the age of my parents when they talked with Kate and me about moving from West Palm Beach to Knoxville. We encouraged them, and they moved here in 1994. They lived in their own apartment. It worked out well for us and for them. I didn’t realize it at the time, but my mom was probably showing the early signs of dementia before then. Four years later, she was diagnosed here in Knoxville. I suspect their age and their health situations were strong motivators in their move. They loved South Florida and wouldn’t have wanted to leave otherwise.

At my age and with Kate’s Alzheimer’s, I find myself in a similar situation. For several years, I have thought about our options. Kate and I have lived in Knoxville for 48 years. We have invested our lives in this area. I find it difficult to think about moving away. On the other hand, Kate and I long ago agreed that we wanted to make life as easy for our children as possible with respect to their care for us. There is no way to relieve them of all responsibility, but there are ways to make it easier.

One of those would be to move closer to them. Right away that becomes a problem. Our daughter lives in Memphis, our son in Lubbock. If we move close to one, we are much farther from the other. Despite that, Kate has always wanted to go back to Texas, and our son is in the elder care business. He is a care manager who works with seniors and their children to meet the needs of both the parents and their children. He is familiar with all the senior resources that are available in the Lubbock area. If we were going anywhere, that sounds like a perfect option.

I’ve thought about this a long time and have mentioned it to both of our children, but I’ve never taken any steps to explore moving out of our current home. During the past six to eight months as Kate has declined, I have become increasingly concerned about what would happen to her if something unexpected happened to me. Could this be the same motivation that influenced my parents’ move?

For years, I have been reasonably familiar with Knoxville’s continuing care retirement communities (CCRCs) as well as the independent living, assisted living, and skilled nursing facilities (including memory care). I haven’t seriously considered any of them for Kate and me, but I have felt three of the CCRCs were possibilities for us should we ever have the desire or need.

Two or three months ago, I decided I should get more specific information about one of the CCRCs I believed was most suitable for us. Each week I meant to call but never got around to it. In the meantime, Kate’s condition has noticeably declined. Two weeks ago, I decided I needed to take action. I called for an appointment. Two days later, I spent almost three hours with the marketing director and one of his staff. They took me through all the details of their community and what it has to offer. Because I have visited several residents over the years, I was familiar with some things, but there were many things I didn’t know. One of those was about a new building that will be completed sometime during the first quarter of 2021. All but three of the apartments were pre-sold. Nothing was available among the existing buildings.

I took several days to think about it. Then I arranged another meeting with the intention of making a deposit on one of three apartments that were still on the market. I met with them again, got a little additional information, and wrote a check for the deposit. I have thirty days to make a final decision. If I decide to go ahead, I will have to put down a larger down payment. If I decide this is not for us, they will return the deposit. Until then, I plan to weigh all the benefits and potential downsides. My friend Mark Harrington once told me that when he is facing a choice like this he flips a coin to determine which way to go. Then he sleeps on it overnight before making a commitment. If he feels comfortable with the decision the next morning, he commits himself. If not, he looks to the other option. In a way, that is what I am doing with my decision. I’ll see how I feel at the end of thirty days.

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Thoughts on Caregiving and Stress

One of the major topics among caregivers and the professionals who provide services to them and to their loved ones is caregiver “burnout.” Marty Schreiber, the author of My Two Elaines and a former governor of Wisconsin, is a very active speaker at many conferences and workshops across the country. He vividly presents his story of trying to “do it all” himself and the toll it took on him. He encourages caregivers to care for themselves and to recognize and seek help when it is needed.

I share his views and have worked hard to minimize my own stress. I watched my dad deteriorate as he cared for my mom. I am much like Dad, but I am not resistant to bringing in help.

At one time or another, almost all of my friends have asked how I am doing and if I am getting help. I appreciate their concern. I am concerned as well. I do, however, believe that I am doing quite well. That’s not to say I don’t experience stress. I do, and it’s increasing. The good news is I’ve been able to manage it pretty well. Let me explain.

My stress seems to come from two distinctly different sources. One is the sheer number of responsibilities I have. The other is a psychological one that relates to watching Kate lose one ability after another with the knowledge that it only gets worse. In this post, I will discuss the stress arising from my responsibilities as Kate’s caregiver.

The 36-Hour Day is, perhaps, the best-known resource for families who are caring for someone with dementia. As the title conveys, the responsibility for caring for a loved one with dementia requires more time than anyone has available. The responsibilities increase as our loved ones decline. If we try to do everything, something has to give, that is, some things will go undone. Often that means caregivers neglect to take care of themselves. Up to now, that has not been a major problem for me. There are several reasons.

One is that I have help. I engaged sitters for Kate a year and eight months ago. I have someone with her three afternoons a week, four hours each time. That enables me to get to my Rotary meetings, to the Y, run errands, and meet with friends. In addition, I have help with house cleaning and the yard. That means I can focus my attention on Kate.

I don’t participate in a support group, but I feel I get support in a variety of other ways. I have two longtime friends from college with whom I am in daily contact by email. One lives close enough to us that we are able to get together several times a year. We have other friends who are close enough for us to make daytrips to see them as well.

Regular readers of this blog know that we eat out for all meals but breakfast and attend live performances like the music nights at Casa Bella and local theater productions. They are both beneficial for Kate and for me. We are not socially isolated. We have church friends and staff that check in on us. I am on a steering committee at United Way and meet with them monthly. I meet for coffee with Mark Harrington every Friday after finishing at the Y. In addition, I stay in touch one or two other friends who are caregivers. I shouldn’t fail to mention this blog and my involvement with Twitter. All of these keep my mind occupied as well as having therapeutic value for me.

In addition, my responsibilities as a caregiver have not been as daunting as those of most others. Quite a few people our age are dealing with other health issues along with dementia. Apart from an occasional cold, neither Kate nor I has had any other health problems to deal with.

Some caregivers face a variety of problem behaviors from their loved ones. Although Kate has been more irritable than she was before Alzheimer’s, she is good-natured, loving, and most appreciative of what I do for her. It would be much harder for me to cope if she were not.

Finally, I believe my past experience with caregiving has helped me. I am now in my thirtieth consecutive year of caregiving. Most of that was with our four parents and my dad’s significant other. Some of that involved overlapping care of three at a time. Fortunately, we had fulltime professional care for both of Kate’s parents. Each of our parents’ situations was different and helped to sensitize me to a broad range of issues. I haven’t felt that I was caught off guard when Kate was diagnosed.

All of this is to say that I haven’t experienced the same degree of stress that faces so many caregivers. I am very fortunate. As I write this particular post, I should note that my stress is at its greatest level. I find myself slipping to take care of a wide range of obligations. Most of them are inconsequential. For example, I had purchased tickets for us to attend a local variety production of Broadway music at one of our local theaters this past Sunday. It is something we would have enjoyed, and we had no other obligations. I simply forgot to put it on my calendar, so we missed it. There are other things that relate to the maintenance of the house that get less attention than they deserve. I have plans to address them a little at a time over the next year. As Kate declines further, I will retain additional help and will likely participate in one or two support groups, but, for now, my stress is still at a manageable level. I am grateful for the concern and support I receive from those around me.

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A Great Day

It seems like it’s been a while since I reported on having a great day. I’m really happy to report that we had one of those yesterday. It was a day of simple pleasures, but Kate was in a particularly good mood. She was happy and talkative. The only rough spot we had was when she got up. The first thing she said was “I want to get out of here.” I explained that we were at home and got her to look out the window to the back yard. She remembered it but said again that she wanted “to get out of here.”

Apart from that she got dressed, and she seemed to have forgotten about her eagerness to leave. In fact, she was ready to leave earlier than I wanted as the restaurant where we were having lunch doesn’t open until 11:30. I stalled a little bit. She waited happily until I was ready.

We had a 1:30 appointment at Starbucks with a representative of TCU. He was in town meeting with alumni. By chance, I noticed him at Carla’s where we had lunch. He was wearing a TCU lapel pin. Kate was excited to meet someone from TCU, and we spoke briefly while he waited to see another graduate.

We went home. It was during that time that she spent time with her Mother’s Day cards that I mentioned in my previous post. She closed her eyes for about ten minutes. I feared it might be difficult for her to get up when it was time to leave, but she got up quickly.

The day before I had sent the TCU rep an email letting him know about Kate’s Alzheimer’s. I didn’t want to depend on slipping him a card if she did or said something he might think strange. As it turned out, that was a good thing. As we talked, she forgot he was from TCU. Something came up about his job with the university. She was excited to learn (once again) that he worked there. He showed us pictures of his family and told us the names of his wife and three children. It wasn’t long after that when Kate asked his wife’s name again. That would probably gone unnoticed if she hadn’t asked his wife’s name three or four other times after that.

After I had ordered drinks for Kate and me, she whispered in my ear “How am I related to you?” I said, “I am your husband.” She said, “I was hoping you would say that.” During our meeting, she was very talkative and, for the most part, what she said was accurate. I believe it was knowing his connection to TCU that sparked her enthusiasm. We chatted for an hour, and I believe she talked at least as much as I did. I think she may have talked more. I deliberately held back a number of times to let her say what she had on her mind. I love seeing her when she is so enthusiastic.

She remained cheerful the balance of the day. She has seemed more childlike in the past few days. That was definitely so yesterday. That is sad as I know that is another sign of change. On the other hand, it is good to see her happy.

She commented on death a couple of times yesterday. One occurred as we walked from the car to the hair salon where she got a shampoo. I don’t remember what she said, but it started with “When I’m gone, I want you to . . .” I think I was so taken by the way she said it that I blanked on what she wanted me to do. During our meeting with the TCU rep, she said, “We all have to die. We might as well accept that.” It didn’t seem to fit in context with what we were talking about. I believe I may be overly sensitive about her recognition that something is wrong with her. When she talks about death, it makes me wonder if that is prompted by that recognition. Since she can’t remember things for very long, I doubt it. At the same time, her intuitive abilities are still sharp. Maybe she subconsciously senses she will go before me.

After dinner, we watched a YouTube video of a PROMS concert of music by Rodgers and Hammerstein. It was a good way to finish a very good day.

I hope today will be as good. She was up at 2:00 this morning and seemed rather clear-headed for that time of morning. She even called me by name a couple of times. As I walked her back to bed, she said, “Thank you. I really appreciate all that you do for me.” I said, “I do it because I love you. We’re a team. We always will be.” She agreed and said, “We’ll get through this.” That is something she says periodically. On several occasions, I have asked her what she meant. She said, “You know.” But I don’t. Could it mean her Alzheimer’s?

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More on Mother’s Day Cards

After lunch yesterday, Kate and I relaxed at home for a short time before leaving for an appointment. She took a seat in the family room. I showed her the two Mother’s Day cards she had received from our daughter and her boys and asked if she would like to look at them. She said, “Of course!” She picked up the one from our daughter first and commented on the “beautiful” colors on the front. Then she opened it and read the message. I asked if she would like for me to read it for her. She declined at first but changed her mind when she stumbled on a few words. When I finished reading it to her, she did just what she had done yesterday. She was in tears and held it in her arms and clutched the card to her chest. She said, “I’m gonna take this with me.” I’m not sure where she thought we were going. She may have been thinking about a move to Texas. That still comes up once in a while.

After finishing that card, she read the one from her grandsons. She had the same reaction to it. It wasn’t long before she wanted to lie down on the sofa. She held both cards closely. She wanted to know if she could take them with her. I told her they were her cards and she could do whatever she wanted. She said, “They’re mine? They don’t belong to anyone else?” She read through the cards one more time while lying on the sofa. Then she put them under one arm and closed her eyes for a short nap. It was touching to see her experience so much pleasure.

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Kate’s Emotions Bring Touching Moments

Kate received Mother’s Day cards from our daughter and her twin boys on Saturday. I put them on the island in the kitchen with the intention of giving them to her the next morning. When we came home from dinner, she saw them and asked what they were. I told her, and she wanted them. I gave the cards to her and helped her read them. Then she took them back to the bedroom where she looked at them again and put them on her bedside table.

That night she picked them up and sat down with them while I took a shower. She was still looking at them when I got out. She must have looked at them a full 30 minutes. She had a beautiful smile on her face.

After she was dressed and ready for lunch with the sitter yesterday, she picked up the cards and took them to the family room where she sat down and looked at them once again. Knowing that she has trouble reading, I asked if she would like me to read them for her. She did. As I read each one tears filled her eyes, she wanted me to read them again. Then she took the cards in her arms and held them tightly against her chest and said, “I’m going to keep these forever.” She paused and said, “And I’m going to tell my children not to ever throw them away.”

I’ve never seen her react so emotionally to cards. In fact, I have been surprised at how little interest she has had in them in the past. I think the explanation lies in the fact that she is at a new stage of the disease. It seems like she is moved even more now by all those things she experiences intuitively. That is true for music, for the beauty of nature, her interest in children, and to expressions of love and concern for her.

I can think of two other examples from yesterday. One involves a ceramic cat that sits on the floor one side of the fireplace. She passes it every time we leave the house. Yesterday, as usual, she stopped to look at the cat and commented on his eyes. She doesn’t confuse him with a real cat, but she loves him almost as much.

The other involved one of the paper doilies that she brings home from one of the restaurants we visit. She loves them. That was obvious when she held one in her hand and wanted to take it with us to dinner last night. It’s like her emotions are in overdrive. She is becoming more childlike. Her rational abilities are almost gone. Her intuitive ones sustain her. For me, each of these things brings a moment of sadness, but I am grateful and touched to see her enjoy such simple pleasures.

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It Was a Good Day.

After her confusion first thing yesterday morning, Kate was fine when she got  two hours later. We had a nice Mother’s Day lunch at Andriana’s and returned home around 3:00. When we went to bed, I wondered if we might have another night of conversation. Fortunately, we both slept well.

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Another Example of Kate’s Insecurity

Over the past couple of months I have felt much better when leaving Kate with a sitter. There have been one or two occasions when she asked if I couldn’t stay with them, but it didn’t sound like she was doing so as a result of any insecurity. It was more like she just wanted me to share in their time together.

This past Friday Kate was asleep on the sofa in the family room when I left. I started to wake her to say goodbye but didn’t. When I walked into the kitchen on returning home, I heard Mary say, “There he is.” I walked into the family room. Kate was sitting on the sofa. She stood up and said, “Thank God you’re here!” (That’s not something she would typically say.) I walked over to her, and she extended her arms to me, and we hugged. I told her I was sorry I hadn’t said goodbye. She said, “I was all right. I just didn’t know where you were.”

She was obviously relieved to see me. I’m not sure that Mary remembered where I was going. Even if she did, Kate’s memory doesn’t last more than a few seconds. She would never have remembered. On a few other occasions, Mary has mentioned Kate’s asking where I was, but this was the clearest indication of the intensity of her insecurity when she doesn’t where I am. I’m not ready to believe that this will become a pattern for the future, but I will be more alert to that possibility.

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More Confusion and Confusion

Shortly after midnight last night, Kate and I had what was almost a replay of a conversation we had yesterday morning. I had gotten up to go to the bathroom. When I got back in bed, I noticed that she was awake. She said, “Where are we?” That began another conversation that lasted until 1:35. She said she didn’t know anything. As I had done the night before, I said, “That must be scary.” She said, “Very.” From there I gave her my name and hers and our relationship. I followed that by lots of the same family information I had given the last time.

Several times she said, “I don’t understand why this is happening.” I told her I didn’t either but that it had happened other times and that she improved as we talked about our lives and family. This conversation was unusual in that she was able to grasp the change in her memory (or the way she felt) as I fed her information. At one point, I asked if I was overwhelming her. She said, “No, I can tell it’s helping.” She suggested that she was remembering a few things and that made her optimistic that her memory would come back. It’s been close to a year since she had her first experience like this.

At that time, it brought about a more intense emotional response. I described it as a “panic” or “anxiety” attack. This morning’s experience was not nearly as intense, but it had an element I had not heard since last summer. She made reference to her doctor’s telling her she might get better. She said the doctor also indicated that she might not. Nonetheless, she was encouraged last night. She also talked about the support she had received from friends. This time, however, she mentioned that her memory might not come back “all the way.” I told her no matter what I would be with her to help. We both said that whatever happens, we would deal with the situation, that we were good at adapting.

The conversation ended when she said, “I think I’ll go back to sleep now.” I asked if she felt relaxed. She said she did. The crisis was over. What is lingering in my mind now is that she seems to grasp that she has something that she won’t be able to conquer. She may improve, but the problem won’t go away. Once again, her intuitive thought processes are working. She doesn’t have a name for it or understand a way to beat it, but she knows something is wrong.

Just before 9:00 this morning, I saw on the video cam that she was starting to sit up in bed. I went to her. She smiled, and I walked over to the bed and sat down beside her. I was expecting that she would be back to normal again. She wasn’t. She was just as confused as she was earlier this morning. The difference was that she wasn’t in the mood to talk about what she was experiencing. She kept saying (not in rapid succession), “I don’t know what to do.” I asked if she would like to go to the bathroom. She asked why. I told her that she usually wanted to go to the bathroom when she woke up about this time. She repeated that she didn’t know what to do. I tried the same approach that had been successful in our two previous midnight conversations. She didn’t seem to pay attention. I think she was still tired and wanted to go back to sleep. I asked if she would like to see some pictures of her family. She didn’t, but I showed her a wedding photo of our daughter and brought in the “Big Sister” album to the the cover photo. She responded with a smile when she saw it, but she wasn’t ready to look at anything else. I asked if she wanted to rest a while longer. She nodded. I asked if she would like me to stay in the room with her. She did. That’s where I am right now. She opened her eyes a few minutes ago but is asleep again. We have a 12:30 reservation for lunch. I think I’ll let her sleep until 11:00 or 11:30 before waking her unless she gets up on her own.

I don’t like all the signs I have seen over the past week or two. This isn’t a change for the better.

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Midnight and Early Morning Conversations

I’m always trying to guess what is going on his Kate’s head. Sometimes I think I have a pretty good idea. Many times, I don’t. Between midnight and 7:00 this morning we had two very different conversations. I don’t know what prompted the first one. I think I understand the second.

Just after midnight, I felt Kate move and looked over. She looked at me. Then she said, “I want you to know how much I love you.” I said, “And I love you too.” Then she said, “If I were to die today, I would . . .” She couldn’t think of the words she wanted to say. I said, “You would be grateful for all the time we had together.”  She said, “Yes, I love you so much.”

That began what must have been a 15-minute conversation in which each of us expressed how thankful we are that we found each other. It’s been a while, but she used to say, “What were the chances that a South Florida boy would end up with a Texas girl?” We often talk about the choice that each of us made to attend TCU. That decision made it possible.

At least three times in our brief conversation she repeated what she had said at the start. “I want you to know how much I love you.” and “If I were to die today . . .” Each time I filled in the last part of her sentence.

We talk about death once and a while. She often says, “We’re all going to die. It’s just part of life.” In all the other times, I knew why she was prompted to comment on dying. This time it came out of the blue. The only thing I know is that she is aware that something is wrong with her. She is having more experiences in which she is concerned about not knowing who she is, where she is, or what is going on. Was she having one of those experiences? It didn’t sound like it. She was talking to me as though she knew exactly who we are and was grateful. It does make me wonder, however, if the experiences of confusion she is having are beginning to make her think she might be dying. I don’t know, but I will be more conscious of any other signs that might suggest that.

I woke up at 5:45 and was about to get up when I heard a whimpering sound from Kate. I told her I was about to get up but wondered if she was all right. She said, “I don’t know. I don’t know where I am or why I am here.” I told her I could help her. She said, “I’m glad you’re here. I’m confused.” I said, “That must be scary.” She said it was. Then I said, “You are Kate Creighton.” She said, “Who are you?” I told her, and she repeated, “I’m glad you’re here.” I told her we had some photo books I could show her and that they would probably help her. She said, “Just talk to me,” and I did.

I put my arm around her and for the next hour told her about her parents, where she was born, our courtship, our marriage, and our children and grandchildren. At one point, I must have started to dose off. She said, “Keep talking.” At 6:50, she seemed relaxed. I said, “Are you all right. I was thinking about getting up.” She said, “I’m fine.” I got up, and she went back to sleep.

I hate for her to have these experiences, but I am glad that it is possible to comfort her when they happen. I really didn’t do much at all. I simply talked to her slowly in a comforting voice and gave her information that stimulated her intuitive thought processes. I am sure she didn’t remember any of it after I told her, but she felt safe and secure.

This is another good example of the intersection of rational and intuitive thought processes. She began the conversation with little or no rational knowledge but an intuitive sense that she should. My providing the knowledge didn’t change what she knows. It did change how she feels.

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Morning, Noon, and Night

As a rule, Kate is happy, but there is clearly some variation that occurs from morning to night. Predicting how she feels in the morning is difficult. She has never been a morning person though she got up early for years without complaining when she was working professionally and playing her role as a mother. Over the course of her Alzheimer’s she has found it harder to get up. Not only that, but she is much less clear-headed now. That varies from one day to the next. Sometimes she seems quite alert. Other times she is quite groggy.

The good news is that she almost always becomes more alert and cheerful as the day progresses. There are exceptions. I reported on one of those two days ago when she didn’t talk much. She didn’t seem unhappy. She was just less energetic. Day before yesterday she was unusually upbeat. Yesterday she was somewhere in between, but happy, and more upbeat from lunch until bedtime.

I have tried to understand why her mood in the afternoon and the evening are the most predictable. I think the answer may lie in the weakness of her rational abilities and strength of her intuitive ones.

Her rational thought processes are weakest upon waking. That actually makes sense to me. I think that is true for many who don’t have dementia. We generally recover quickly as we look around us, especially if we have contact with a spouse or other family member. It doesn’t work as easily for people with dementia. During the day, Kate often doesn’t recognize that she is in our house or who I am, but she is groggiest in the morning. It’s hard for her to put things together.

She is usually able to reach a comfort level in a relatively short period of time. A few times it has taken as much as an hour or two. Here is what I think is going on. The longer she is up, the more contact she has with the things in her environment. That gives her a greater sense of familiarity with me and with our home. It’s not that she necessarily remembers her name and mine or our relationship, but she feels comfortable.

That contrasts with the way she feels upon waking. Then everything seems strange. Fortunately, there have only been one or two times when she didn’t seem comfortable with me. That enables me to help her find things in the environment (for example, looking out the window to our patio and back yard) or telling her things (like her mother and father’s names) that give her a sense of “place.” As we go about our normal routine, she encounters a variety of experiences. Throughout the day, she has more experiences that increase her comfort level.

For several years, I have thought the time after dinner is the best time of the day. A large part of that is because Kate is more at ease, but I think there is more to it than that. By that time of day, she is tired. She really wants to relax. The same is true for me. I have spent the entire day focusing on ways to make her day interesting as well as tending to the many other responsibilities of being her care partner. That includes taking care of the house and all that goes along with it.

When we return home from dinner, she likes to sit in her chair in the family room and work her jigsaw puzzles on her iPad. I like to relax by watching the news. About 8:00, we adjourn to our bedroom where I put on a DVD or YouTube videos of musical performances. We both enjoy the music while she continues with her puzzles, and I often take care of email correspondence, check in on Twitter, or work on my blog. At that time, we are both free of any great demands. Neither of us talks much during that time, but we are both happy doing “nothing” together.

Being alert and happy in in the afternoon and evening does not mean any improvement in Kate’s symptoms associated with her Alzheimer’s. She can be happy and confused at the same time. In fact, it is rare for her to be confused and unhappy. I have reported on each of the times this has occurred. It doesn’t seem like that has happened more than five or six times.

As I have said before, the way I feel is heavily influenced by her mood. I think that has always been the case, but it has become especially pronounced since her diagnosis. I think that relates to the loss of her rational abilities. I have learned to accept the fact that her memory is almost gone. As a result, our relationship is heavily dependent on sharing her intuitive abilities. When she enjoys music, children, social experiences, and nature, especially “all the green” of trees and shrubbery, I enjoy both the experiences she is having and, perhaps more importantly, seeing her enjoy herself. I understand those pleasures can continue close to the end of this journey. If that is so, many happy moments are in our future. If not, I’ll treasure the ones that came before.