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Adapting to Changes in Our Morning Routine

For most of my life I have been an early riser. I simply like being up early. As an adult, that has meant getting up, exercising, and going to work. After I retired, I continued getting up between 5:00 and 6:00. Over the past few years, I have made a number of adjustments to my morning routine. For a while after retirement, I dropped by the office for a couple of hours. Gradually, I stopped that to spend more time with Kate in the morning. I continued going to the Y three days a week and started walking the other four days. Over a year ago, I began to feel less comfortable leaving Kate by herself. That ultimately led to my engaging a sitter three afternoons a week. I started going to the Y during that time rather than in the morning. Until recently, I felt all right about leaving her early in the morning to take a morning walk.

Two things occurred that caused me to change again. The first, and to me more serious one, was Kate’s experience of an early morning anxiety attack. This was one of those times when she was upset at not knowing where she was or who she is. I was worried about her having another attack and my not being here to comfort and calm her. Simultaneously, I had a pinched nerve in my hip. This occurred when I stepped up my walking from 2.5-3.0 miles each morning to 3.0-4.5 miles. I decided I should take a break from both the Y and my morning walk.

One of the consequences of this change has been a reduction in my “reading” (actually listening) time. I have missed that as much as the exercise itself. I have always found it much easier to listen while walking or on the stationary bike or treadmill at the Y than simply sitting in a chair at home. I seem to be more distracted at home. I decided to try it anyway. I started listening 30 minutes each day. It didn’t feel right, but I discovered that it worked much better if I closed my eyes.

The hip is better now, but I still don’t want to leave Kate. Over the past few days, I’ve walked in a circle that takes me from our kitchen, family room, living room, dining room and back to the kitchen. I walk for 30-40 minutes while listening to a book. This is not the best arrangement. It is clearly a compromise, but it seems to be a good way to gradually get back into walking and listening. It is definitely not a long-term plan.

An additional issue is that the reduced exercise and reading have been an important part of my effort to minimize stress. That has been unfortunate in that it has occurred at the same time Kate is declining more rapidly. On top of that, Kate’s sleeping later in the morning means we are not as regular in making our morning trips to Panera. We are beginning to lose touch with that community of friends whom I have always recognized as helpful stress relievers. That, in turn, means I feel more stress than I have before. I am looking at other possibilities to right the ship. I’ll address that in another post.

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Adapting to Change

None of us escapes change. It’s all around us. For those of us living with Alzheimer’s it’s the same. The difference is the source of those changes. In our case, it’s the plaque and tangles that keep growing inside the brain. We’ve learned to expect some changes. Others are unexpected. Regardless, we adapt.

Our weekend trip to Nashville causes me to reflect on a minor change that I experienced in connection with travel. By itself, it is really unimportant, but it is illustrative of the required adjustments that we continually face. It relates to my personal morning routine.

I have always gotten up earlier than Kate. I also like to eat breakfast shortly afterwards. It had been my custom to get up, shave, dress, and go to breakfast while she slept. I have followed this same routine when we are traveling. In the rare event that she woke up before my return (I’m not aware that it ever happened), she understood where I was and didn’t worry. I felt there was no reason to hurry, so I left with my computer or iPad and took my time getting back to the room. Later on, I began to be concerned that she wouldn’t remember where I was. I started leaving a sign that said I was at breakfast and would be back soon. In addition, I took the words “back soon” seriously and didn’t stay any longer than necessary to eat breakfast. I ate quickly and went back to the room. When we are in Lubbock we stay in a Residence Inn where they have a buffet. I request a room on the first floor so that I can get to breakfast and back easily and also take something for Kate. That has worked well for quite a while.

Saturday night in Nashville we stayed in a Marriott and were on the fourth floor. My concern about leaving her has increased significantly during the past few months. Before making the trip, I decided that I would request room service so that I didn’t have to leave her at all. For me, that represents quite a change. Eating breakfast in the semi-darkness of a hotel room is not my idea of the best way to enjoy breakfast. The only other time I recall ordering room service was in 1976 when our family was in Medellin, Colombia. Our children were 7 and 5 at the time, and I am sure that was motivated by convenience.

As I look ahead, I believe our travel is coming to an end. We do have a trip scheduled for Thanksgiving with our son and his family. In that case, our room is likely to be on the first floor again. That should enable me to slip to the buffet and bring breakfast back to the room.

This is hardly the most serious problem involved in our travel. lf it were, I would happily go without breakfast at all (if necessary, of course <g>). The most serious issue is losing her. That has happened several times. Another is getting through airports. Going through security is more challenging. Use of restrooms is another. Regardless of how serious the potential problem, each one requires changes from the way we used to do things.

As I mentioned at the beginning of this post, much in life is changing, and all of us are adapting. There is a significant difference in caring for someone with dementia, and I am reminded of the words of the serenity prayer. “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” As caregivers, we cannot change many of the things we face. That leaves us only one option. We must do the changing ourselves. Those for whom we care cannot.

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Changes Abound

After a rough start yesterday morning, we had another pleasant day with Kevin. Kate was a little harder to wake. That may have been a result of her getting up early two days in a row. When she did get up, she was a bit grumpy. She seemed more herself at lunch, but when we got home she was tired. I made a trip to the bank. When I returned, I suggested that we watch a little of Les Miserables. I was hoping that might perk her up. It didn’t work. That was the first time I had seen her react with so little interest. She finally got in bed, and I turned it off. That gave us another thirty minutes to get ready to leave for dinner.

The highlight of the day was having a birthday dinner with friends from church. One of them had been involved with the youth program when Kevin was in high school. He has kept up with her over the years. We have gotten together with her and her husband several other times when Kevin has been with us. We had lots of laughs and good conversation. Kate felt very comfortable and participated in the conversation to the extent possible. Several times she had to ask us who or what we were talking about. It is very difficult for her to follow conversations as they flow quickly from one person to another. I was glad to see her asking for us to clarify things. That is something I have never her seen her do with the people we sit with at Casa Bella on our music nights. There she remains silent and never understands what we were talking about.

As she changes, I am adapting as well. Knowing that she might wake up and not realize where she is, I started leaving the doors open into the family room. Previously, I have been sensitive to waking her and tried to minimize any noise and light from disturbing her. Now I believe it is more important for her to hear me and know where to find me. I am also going to be checking on her more frequently. I’ve also thought about putting a monitor in her room connected to a speaker in the kitchen so that I might hear her more easily if she should call me. It’s not that I have tried to pay close attention to her in the past. It’s just that I feel a need to increase the attention as her memory gets worse.

Over the past week or so, she has become even more dependent on me to help with her clothes. For the past four or five days, I have been getting her clothes out for her and sometimes helping her put them on. One of her biggest problems is remembering where her clothes are. I put them on the chair beside her bed. That is what she had been doing before I took over.

Sometimes she doesn’t notice them at all. More frequently, she sees them but moves them to a different place and often separates them. Then I have to help her find them. When she can’t find then, and I am not there, she goes to the drawers in my bedside table and/or to my closet where she gets into a variety of my things. I may have mentioned that the other day she had put on a pair of my winter pajama pants and was going to wear them instead of the ones I picked out for her. I came in after she had them on and showed her the ones I had chosen.

I see significant changes that sadden me. At the same time, I am glad that we have so many happy moments. I know there are more sad ones coming. We are both adapting. I am glad to say that I am not yet overwhelmed by the changing responsibilities, but I know I will need to have extra help at some point. That may come sooner than I would like.

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More Good Times

It’s 10:15, and were sitting here at Panera. Kate was up early enough for us to get here by 9:30. Of course, that makes me happy because today is another day for the sitter. I want to spend as much time with her as I can. To top it off, Kate is in a very cheerful mood. That certainly gives me a boost. It continues to amaze me how much that offsets the sadness that I might otherwise feel when I see all the changes that accompany this stage of her Alzheimer’s.

Some of those changes make caring for her easier than in the past. In particular, I am thinking about managing her clothing. She is much more compliant than in the past. That relates to her increasing dependence on me. For example, we got home from Panera around 5:00 yesterday afternoon. I planned for us to leave the house for dinner at Casa Bella at 5:30. The attire for their music nights is informal, but I felt that both of us should change into something a little nicer than what we had been wearing all day. Past experience led me to be concerned about suggesting that she change clothes. That was especially true last night. I wanted her to change her top, pants, and shoes. I approached this carefully saying, “We have a little time before we leave for dinner. I thought it might be nice if we changed clothes.” She said, “Okay” without any concern or question. I had already picked out what I wanted her to wear and brought it to her. She changed clothes without a problem. She looked terrific. The top I had picked out was one I had bought several months ago. I had tried to get her to wear it previously, but she thought it was too dressy.

Our dinner and the music was terrific last night. Kate enjoyed herself although she is talking less and less in situations like this. We were seated at a table for 8. When the singers were not on, the conversation was lively. I didn’t see any sign that Kate was bothered by this. I think the music made the difference. If we had been at dinner for 2 ½ hours without it, she would have been very bored. I wouldn’t have blamed her. I would feel very alone if I were in a group of people I didn’t know and couldn’t remember anything to talk about.

This makes me think of my mom who had dementia. My dad took her with him almost everywhere long after she engaged in conversation. I didn’t really think about it then. I know much more now that I wish I had known then. I do believe we treated her the right way. We expressed our love for her, and we considered her a part of all gatherings up to the time of her death. Today is their anniversary. Sixteen years ago, we celebrated their 70th anniversary at our home. She died less than a month later.

I also think of my dad. I have done that frequently as I have learned to care for Kate. He was quite a model of a husband who devoted himself to caring for his wife. He did it with very little help. He took her to day care every Wednesday morning while he attended Kiwanis and ran errands. The only other help was from me. That was primarily remaining in almost daily contact and providing evening meals. Otherwise, he was on his own. I should add that it was his own choice. My brother, Larry, and I tried to bring in help or get him to move to assisted living. He fought it and won.

Now Kate and I are traveling the same road. I think we are also handling the situation well. I am comforted by the belief that we will continue to enjoy the days ahead even as life changes for us. Already I am beginning to adapt to Kate’s not knowing her way around the house. It was somewhat shocking when I noticed the first signs. Now, it is becoming routine. When we got home last night, she very naturally asked me where the bathroom is. Just as naturally, I took her.

Before leaving the house this morning, I went to our bathroom to brush my teeth. When I returned, I couldn’t find her. I called her name, and heard her respond but didn’t immediately locate her. I followed the sound of her voice and found her in the living room. She was waiting for me. That is unusual. Like many people these days, we almost never use our living room and keep the doors to the front of the house closed most of the time. She obviously didn’t know where to go and wandered there waiting for me to find her. That is a change from her usual behavior. Normally, she goes to the car and waits for me there.

Her loss of memory for the rooms in the house is sad, but as I said before, her cheerfulness and the good times we have more than balance the sad times.

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Predicting the Future and Planning Ahead

Among the news dominating the airways today is Hurricane Florence as it approaches the East Coast of the U.S. It reminds me that at some time or other all of us find ourselves attempting to predict the future and consider our options. Of course, some things are easier to predict than others. Predicting the path of a hurricane has improved decidedly over the years; however, a lot of the things that you and I try to predict are much less reliable.

That leads me to comment on my own expectations for the future with respect to Kate’s Alzheimer’s as well as how I will respond to it. First, I’d like to say that I have recognized the importance of living in the moment with Kate. Just about everything we do is geared toward making the most of our time together. I am satisfied that it has worked to our benefit.

On the other hand, I tend to be a planner. I believe in the value of making preparations for the future. For me, that has meant understanding the various options available to us depending on Kate’s situation. Since Kate and I played a significant role in caring for my mother, who had an undiagnosed form of dementia, and Kate’s mother, who had vascular dementia, I have been painfully aware of where the journey ends. I am also well-acquainted and experienced with the variety of care options that are available to us during the progression of her illness.

As far as knowing if and when we might need to exercise one or more of these options, I’ve been far from omniscient. My mother died about four years after her doctor (actually, the social worker) told us she had dementia. My dad and I knew it sometime before then. If I had known then what I know now, I would have approached the doctor earlier. I suppose I was like most people. I just thought she was experiencing normal memory loss that accompanies aging. Besides that, I didn’t recognize ways in which Dad and I might be proactive in making Mom’s life easier. Looking back, I think Dad intuitively did the right things. He kept her actively engaged. Even near the end of her life, he usually took her with him when he went out. Of course, he had little option since he would never accept our getting help.

Kate’s mother died six or seven years after a stroke that led to her vascular dementia. For almost that entire period of time, she received in-home round-the-clock care, a year or two in her home in Fort Worth and almost five and a half years in our home in Knoxville.

Based on these two experiences, I never would have guessed that Kate and I would be able to enjoy ourselves so much at this stage of her illness. My approach as always has been to continue to do all that we can for as long as we can. At each stage, I have tried to look ahead to be prepared. Along the way I’ve asked myself the following questions. How long can we live a normal life?

How long will we be able to travel?

What will happen to our annual trips to Chautauqua?

When will I have to seek in-home care?

Will I be able to keep her at home as her mother did for her father? As my father did for my mother? As we did for Kate’s mother? If so, when will need 24/7 care and for how long?

Will I need to consider either or both of us moving to a care facility of some type? Independent living? Assisted living? Skilled nursing? A continuous care facility?

Shortly after the diagnosis, I thought that in 5-7 years we would be unable to have much pleasure. Within a couple of months, Kate and I both realized that we were living just as we were before. For the most part, that continued for another year or two. I realize now that this varies from one person or family to another. We have been more fortunate than I expected the entire way.

As far back as 2014, I thought our international travel was over. We traveled to New Zealand for three weeks. In May 2015, we took a trip to Switzerland for a similar period of time. That trip convinced me that was our last trip of that nature. It was simply getting too difficult for me to manage her and to handle the travel arrangements as well. In the Fall 2015, I made initial plans for a Mediterranean cruise from Barcelona to Amsterdam for May 2016. I could cancel without a penalty until the end of February. As Christmas approached, I began to question the viability of those plans. I decided to take a one-week cruise to the Caribbean in January 2016 just to see how well she (and I) got along. That experience convinced me to cancel our May cruise. Kate simply didn’t enjoy it as much as I had hoped. I think everything was too unfamiliar for her. It was simply too confusing.

Spending a week at Chautauqua during the summer was one of our favorite things. In 2016, for the first time we spent three weeks there. I was anticipating that as our last time there. I was wrong. I decided to try one more time. We went back in 2017 for a one-week stay. We enjoyed ourselves, but I was convinced that we would not be back. This time I was right.

Making the decision to engage in-home care was a big step. I never felt that I really wanted it from an emotional standpoint. I did, however, believe it was important to seek help if I wanted to care for Kate at home for the entire journey. This past Friday we completed our first year with a sitter. Once again, my guesses regarding the future were not accurate. That is probably a year or two later than I might have guessed after her diagnosis. We began with a schedule of three days a week for four hours each visit. That is still our schedule. I’ve moved slowly on increasing in-home care. I am grateful that we have been able to enjoy many pleasures a good bit longer than I expected, but I see more dramatic changes ahead. That is raising new questions about the future.

I suspect that this fall or winter I will add additional time. I haven’t been particularly good at predicting the future. I hope it won’t be necessary for a while longer.  I’ll say more about that and the possibilities for long-term care in Part 2.

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Confusion, Growing Dependence, But Happy Times As Well

Kate’s confusion continues and along with that her dependence on me. Despite her confusion over our marriage, we had a nice lunch. We had two brief social encounters with friends we hadn’t seen in a while. One was a former neighbor, the other a member of our music club. After lunch yesterday, we came back to the house for a little over an hour before we went for our hair appointments. During that time, we relaxed in the family room where Kate worked on her iPad. The music was relaxing. It was a very pleasant moment in the day.

After our haircuts, we were off to Barnes & Noble where we also saw a couple of friends who stopped at our table to chat. From there we went to Bonefish Grill for dinner. Once again, we saw several people we know from our neighborhood and had a good meal.

When we got home, we spent a little time in the family room where I watched the news. Then we retired to the bedroom for more of Fiddler on the Roof. After saying yesterday that Kate only puts down her iPad for Les Miserables, I noticed that she quickly became engaged with Fiddler. We watched for an hour during which time she never opened the iPad. Watching an hour or so of a musical she enjoys is becoming a good way to end the day. She enjoys herself must direct her attention away from confusion and loss of memory.

I am noticing more confusion at bedtime now. It is something that has been happening for a good while. It’s just that now she seems to be especially confused about getting ready for bed. That has obviously happened in the past when she has gone to her room to get a night gown and not come back with one. During the past few days, I have taken the lead and said, “I’ll get your nightgown.” She says, “That would be nice” or “Thank you.” There is no sign of independence. I think by that time of the day she wants what is the easiest thing.

I woke her at 10:40 this morning. I think she was about half awake anyway, and I would like for us to get to lunch before Mary comes at 1:00. She got up easily, but it was obvious that she was confused. She asked me what I wanted her to do. I told her she could take a shower in our bathroom. She asked, “Where is that?” I point to it and told her I would show her. I got towels out for her. She seemed very unsure of herself. I definitely feel better about her showering in our bathroom because of the walk-in shower. She has showered there every day since her fall last week. I feel we were fortunate that she didn’t hurt herself. The next day I asked her if she felt any pain from the fall. She didn’t remember the fall and didn’t have any pain.

Life is quite a mix of things right now. I suspect this is only the beginning. I am just glad that we can still enjoy time together. I would not have believed it 7 ½ years ago.

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So, how am I feeling?

I am sometimes asked how I’m doing? I know the question is asked because people hear so much about the stress experienced by caregivers. As someone who has read a lot about dementia and caregiving, I am quite familiar with the dangers we face. One of the things I’ve learned is that over 60% of caregivers die before those for whom they care. As a result, I am very sensitive of the need to take care of myself as well as Kate. So, how am I doing?

I believe I am getting along quite well. Does that mean I don’t experience any stress? Not at all, but I do a lot of things to ease that stress. I just finished reading Support the Caregiver by David Davis and Joko Gilbert. In their book, the authors identify a variety of ways for caregivers to care for themselves. I was glad to see that I have used all of them. I’ve relied on three in particular. Exercise, reading, and social engagement (one of my choices for “Me Time”). How much time I have devoted to them has varied. For example, Kate’s sleeping late in the morning has put a dent in my social contact. Though our morning trips to Panera began for Kate, I found it has been just as important for me. Thankfully, we are still able to eat out and make it to Barnes & Noble in the afternoon. That is good for both of us. In addition, I get together for coffee with a friend every Friday and maintain an active email communication of two close friends from my college days at TCU.

Having less social contact in the morning and the number of desserts we are now eating has led me to increase my exercise. Previously, I was averaging just under 3 miles each morning. My new average is over 4 miles. Very quickly I dropped about 4 pounds that I had wanted to lose for several months. Of course, I could have given up the desserts, but I don’t want to look back some day and say, “I wish I had enjoyed more desserts with Kate.” It’s not just the dessert; it’s those moments of sharing one together. Since my reading is actually listening while I walk and at the Y, that has also increased my reading time. That’s an extra bonus.

Within the last 4-6 weeks, I have added another way to care for myself. I have begun to meditate. I had read so much about the benefits of meditation, I just had to try it. I’m not ready to say that has made a difference in how I feel overall, but I have found it very relaxing. Right now I meditate in the pool for 20 minutes after getting home from my walk. I was motivated to use the pool because I enjoyed cooling down after walking. It won’t be long, however, before the water will be cooler than I like. When that happens, I may sit on the patio. As the fall weather approaches, I will move to the family room.

One of the things I have learned is that there are many forms of meditation. I was influenced by a book that dealt with mindfulness, being mindful of one’s self as well as one’s surroundings. It would come as no surprise that I incorporate music with meditation. I have several albums of sacred music that are very peaceful. I always begin with my eyes open and take in what each morning looks like at the back of our house. The neighbor behind us has a dense growth of trees. That has sensitized me to the sometimes subtle, sometimes dramatic differences each day. Some days the trees are perfectly still. Not a leaf seems to be moving. This morning the trees were swaying in the wind. Although morning can be an active time for birds and squirrels, sometimes I see hardly a sign of either. During the last part of meditation, I close my eyes and listen more carefully to the music and the sounds of nature.

I find that I become very relaxed. When my timer goes off, it feels a little like waking up from a sleep. It’s a good feeling, and I don’t like to end it abruptly. I don’t hurry to get back inside. When I am back in the kitchen (my office), I continue to play very soft music for an hour or two. That is working especially well now that Kate is getting up later. This is becoming another of my options for “Me Time.” I don’t schedule anything in the morning unless it is necessary. I started doing that for Kate. Now I feel that works for me as well.

All of this is to say that I am mindful of the need to take care of myself and believe I’m doing a pretty good job of it; however, I still haven’t said how I feel. The answer is I feel good most of the time. I especially enjoy my time with Kate. I treasure each moment with her because I feel they are drifting away. I have sad moments. Those are usually the times when she is down, but they also occur when I see new signs of her decline. I am continually adapting to her being able to do less and less. At the same time, I have a sense of satisfaction that we have done the best we can to take advantage of our time together. That’s a good feeling. Just as important, I know that we will continue to enjoy ourselves. I hope that we will be able to do that a good while longer.

Let me conclude this post with something I read in Support the Caregiver the other day. The authors distinguish between being “sad” and experiencing “sadness.” They suggest having sadness is an “appropriate and healthy emotion for the loss of a loved one.” Being sad prevents one “from moving forward into a healthy and productive life.” I am not sad, but I do have moments of sadness. I believe the same is true for Kate.

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Always Adapting

Every caregiver of a loved one with dementia knows it is helpful to adapt to the changes that confront us. I get that, but I don’t adapt at the first signs of change. In fact, I often work hard not to give in to the changes that are required. Giving in has its benefits though. The big one is that you don’t have to fret over the fact that what you want isn’t going to happen.

That’s my introduction to the change I made yesterday. You may have read one or two posts in the past few weeks that conveyed my desire for Kate to get up early on the days we have a sitter, especially on Monday when the sitter arrives at noon. I started our custom of going to Panera each morning so that Kate could get a muffin. As we became acquainted with the staff and some of the regulars, I felt the social encounters we had were good for her. It has been a time that the two of us could share a pleasant social experience that was easy for Kate.

Earlier this summer when she started sleeping later in the morning, we had less time for Panera and sometimes missed it altogether and went straight to lunch. That didn’t present a problem for Kate. She has never expressed any disappointment about missing her muffin, Panera, or the social experiences we had there. That wasn’t true for me, however. I had grown accustomed to spending one or two hours a morning with her in a social setting. I wasn’t even eating. I just had my coffee. The difficult part was giving up the social experience. Originally, I took Kate to Panerea for her, but, ultimately, I found it was as much or more for me.

Yesterday I decided I would not rush her, but I did make an attempt to wake her in time for me to take her to lunch at Panera. She had no interest in getting up, so I decided to let her sleep. I would just ask the sitter to take her to lunch for me. Having made that decision, I relaxed and went about my business. That is the big benefit of letting go. I’m not going to fret over this. From now on, we’ll go to Panera if she is up in time. Otherwise, I’ll let the sitter take her. By the way, as it turned out, Kate did get up in time for me to take her to lunch. It was almost 11:30 by then, so I called the sitter and asked her to meet us at Panera.

That only takes care of three days a week when the sitter comes. There are still four other days. There have been at least two or three days lately when we didn’t get to lunch until close to 2:00. Since I am usually up between 5:30 and 6:00, I eat an early breakfast. I’m ready for lunch between 11:30 and noon. It would be no problem to wait until 1:00, but 2:00 is stretching it. The most obvious solution to this problem is to keep something in the house to either substitute for my lunch with Kate or tide me over until then. I think I’ll just take this one day at a time. In the meantime, I’ve been snacking on a little granola. That seems to work for a limited time.

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A Change in My Morning Routine

I’ve been pretty open about my following a predictable daily routine. That’s especially true in the morning when I have the most control. After that, I seek routine but always bend to the necessities of the day. I find that I bend a lot more with the progression of Kate’s Alzheimer’s. Her recent changes and the summer weather have made a difference.

As long as I can remember my first order of business has been to eat breakfast. During the past four or five years, I’ve added a daily walk of 2 to 2.5 miles right after breakfast. Over the past few weeks, that’s changed.

I was initially motivated by the weather. The morning temperatures and humidity have been a little warmer than I like, so I decided to walk a little earlier. I tried that, but it was still too warm by the time I reached the mid-point of my walk. That led to what I previously would have thought to be the unthinkable – walking before breakfast. It took me a week to get fully adjusted, but it is working now. That first week I was so accustomed to beginning my other daily activities when I got back from my walk that I forgot to eat breakfast three times. It was only a little later in the morning that I felt unusually hungry. I quickly realized the problem.

One morning I was hotter than usual when I got home from my walk. I decided to cool off in the pool. I was only in the pool about twenty minutes, but I found it a nice way to end a walk, so that has become my new normal. I’m not sure how long I will continue that. I suppose that will be when the water is colder than I like. That shouldn’t be too long. In the meantime, I am enjoying the new routine. I think it may have some therapeutic benefits as well. I’ll say more about that in another post.

With Kate sleeping later than usual, the added stress as she declines, and the increase in the number of desserts we are now eating, I’ve increased the length of my walks. Instead of 2 to 2.5 miles I have gradually increased that to a little over 4 miles. Yesterday it was 4.5 miles. Today it was 4.6 miles. I’m stopping there.

Apart from its stress-reduction value, it also gives me more time for reading (listening). That is especially helpful with longer books. Now I am listening to A Gentleman in Moscow. It would take me 16 days walking my shorter route. My new one will allow me to do it in 12. I should also add that I have dropped almost five pounds. For the past couple of months, I have been five pounds heavier than I like to be. Burning more calories really helps.

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Back to Normal

After the pain of Friday night, we were back to our new normal routine yesterday. I say new normal since Kate is sleeping later somewhat more consistently now. It appears that the new pattern is to sleep late a couple of days in a row. Then she gets up at a normal time the next day. If that pattern holds, she will probably sleep late again this morning. I woke her around noon yesterday. We went directly to lunch, arriving about 1:30.

We came back home where we relaxed over an hour. I got out a three-ring binder with photos of our children and grandchildren as well as Kate’s brother and his wife. I had also included several pages of information about us. It included basic family information like Kate’s parents and grandparents, her brother and his wife, and our children and grandchildren. There is also a section to which I will continue to add information. Right now it includes our dating, engagement, wedding, and honeymoon. First, I’m going to revise what I have. I’m going to format the information as an outline rather than a narrative. That will be easier for her to comprehend. I also don’t want to overload her. I think having little snippets of information is better than trying to tell a more complete story. Kate was interested in what I had put together. That made me happy. I wasn’t sure what to expect.

When we finished with Kate’s Memory Book, I picked up her Big Sister Album that Ken made and gave to her in the spring. It’s 140 pages with multiple photos on each page. She went through the entire album. For Kate, it was just like seeing it for the first time. I am struck by the fact that there are a few pictures that she always singles out as especially good. She loves the picture of Ken and her on the cover. It was taken when they were 6 and 3. I think the album is especially important for her right now when she is beginning to lose so many of her memories.

When we finished, we had about an hour and a half before dinner. We went to Barnes & Noble. From there we went to dinner and back home. We relaxed a while in the family room before adjourning to our bedroom where we watched a portion of Sound of Music. She was feeling tired and got to bed at 9:30. I got in bed shortly thereafter.

Neither one of us said anything about the previous night. We were back to where we were. This is a good example of the pattern of changes that occur over time. There is never an abrupt end of one thing and a beginning of another. That is the way it has been with names. She sometimes forgets names but remembers them at other times. As time passes, the forgetting becomes more common. Most of the time, she no longer remembers the names of our children, but sometimes she does. She is forgetting my name more than in the past, I see that it won’t be long until my name and hers will be lost.

This gradual process helps me adapt. I am bothered by the first signs of new things that mark the progression of her disease. Then I begin to adapt. Then something else happens. I try not spend a lot of time worrying about it, but I do wonder what our lives will be like 3-6 months from now. I hope that we will be able to make a trip to Texas for Thanksgiving with Kevin and his family as well as to Virginia to be with Jesse and her family for Christmas. It is still too early for me to know if this will work out.