Telling the Truth (or Not)

Telling the truth is among our most universal moral/ethical values. Parents teach their children to be truthful very early in life. In addition to the family, our social institutions (religion, education, economy, and politics) support the truth in one way or another although we usually think of the family and religion as having the greatest role to play.

Despite this kind of cultural and social support for the truth, we all know that lying is quite common. We also know that it may not always be best to tell the truth. In everyday life we are often untruthful because we want to protect someone. We see that most easily when a child scribbles a picture and gives it to her mother on her birthday. We expect the mother to say, “Thank you. It’s beautiful.” Even when it isn’t beautiful at all.

With this in mind, it would not be a surprise to learn that caregivers face many situations in which they make a decision not to be truthful with their loved ones. We do that in those moments when we “live in their world,” and it’s very similar to my example of the child’s gift to her mother. Several months ago, I had one of those with Kate when we arrived home, and she thought we were revisiting either a house that we had lived in years ago or the one in which she had grown up. It was such a surreal experience I was never clear. I do know that I made a conscious decision to go along with her and not destroy what was such a beautiful emotional experience for her.

Late yesterday after the sitter left, she had a similar, though less intense, experience. I didn’t immediately recognize it because it began with something that is now so normal. She got ready for us to leave for dinner. She was carrying her house slippers, a tube of toothpaste, and her toothbrush. As we walked through the family room, she said, “Don’t you like this room?” I told her I did, and we stopped to look around the room while she commented on things she liked. I still didn’t think much of what was happening. I am accustomed to this. Once we were in the car, she put her right hand in one of the slippers as though it were a glove. Then she started to put the other slipper on the other hand when she ran into a problem. That slipper held the toothpaste and toothbrush. She decided not to wear either of them and put them in a side pocket in the door.

As we drove out of the driveway, she talked about the neighborhood and how much she liked it. Then she surprised me by saying, “I’m glad we don’t live here anymore.” I could easily have said, “But we do still live here.” I didn’t. I said, “But it’s a nice area.” Then she said, “Yes, but it’s such a big city.” I didn’t say anything else, nor did she. As we had gone a little farther, she commented on all the lights. That is something she usually talks about in a positive way. It was beginning to get dark and rush hour. This time she was bothered by all the lights from the cars.

This is restaurant week, and the restaurant was quite busy. It was noisier than we would have liked, but we saw several people we know. There was a group of six or eight who are members of our church choir including the wife of our former choir director. She was the first to arrive and came to our table and chatted for a few minutes. In a little while, a couple we know from the opera nights at Casa Bella arrived and stopped by the table to say hello. Finally, we saw someone I used to see at the Y. I was a little surprised that Kate did not respond with more recognition of these people, but I think she may have been distracted by all the activity and the noise level.

It wasn’t until we had finished our dinner and were about to leave that she said, “Where are we going from here?” I answered automatically, and truthfully, “We’re going home.” She said, “Oh, we’re that close?” I told her we were just about ten minutes away. In a moment, she said, “I’m glad we don’t live here anymore. It’s too busy. I like living in a smaller place.” I didn’t say anything. I did begin to suspect that her bringing the slippers, toothpaste, and toothbrush was rooted in her belief that we were leaving our “old” house and woudn’t be back.

I wondered how she would respond when we got back to the house. She didn’t say anything about the house or the neighborhood or being glad we didn’t live here anymore. In fact, it almost appeared that she didn’t remember the house at all. When we walked out of the family room toward our bedroom, she pointed down the hallway to her right and said, “What’s there?” I told her that was a bathroom, and she decided to use it.

In a few minutes, I saw her start to close the two doors leading to the family room and told her it was all right to leave them open. Later, when I went to get her night gown, I noticed that she had closed the doors to the other bedrooms. I don’t know what prompts this, but it is not unusual.

Yesterday’s experience of playing along with Kate was an easy one. I never felt I should be truthful and point out that we were currently living in the house she thought was a former house. Neither did I feel any necessity to correct her when she thought we now live in another town. Some situations require more thought.

Several of those occurred a few months ago when she had several anxiety attacks and didn’t know where she was or who she is. Twice when she said, she didn’t know what was happening to her, I reminded her that she has Alzheimer’s. The first time she seemed to be a bit relieved. She said she had forgotten she has it. She accepted this very naturally. Of course, she forgot it. The second time it didn’t seem to mean anything to her, and I chose not go any further. I wouldn’t want her to think about the future and what she will experience. My only reason for telling her before was to relieve her anxiety about what was causing her memory loss. Although the truth didn’t cause a problem in those instances, I need to think of a less truthful but satisfying response.

There is one other situation that comes up much more frequently that I am beginning to wonder about. That involves the death of her parents. Up until now when we have talked about them, I have spoken about them in the past tense. Most of the time that is just fine. Sometimes, however, she is sad when she learns they are gone. That hasn’t been a problem so far, but I know that it could be sometime in the future. For that reason, I am becoming more sensitive when I talk about them. I can easily see my reaching a point when I always speak of them in the present tense.

The Joy of Living with Alzheimer’s

Whenever I tell people that Kate has Alzheimer’s, I see a shocked look on their faces. Their words match their faces. All one can think about is the horror of the disease. I understand. I was in their shoes when Kate’s doctor gave us the diagnosis. That was almost eight years ago. I’ve learned a lot more about the disease during that time. I still recognize the sad aspects and never intend to deny them in my posts. They are real, and I am about to experience more of them as Kate approaches the late stages of the disease.

When I began my journal, my intent was to document our journey. I didn’t know what it would be like, but I thought there might be other people in our shoes who could benefit from our story. For me, the most important thing I have learned is that the enjoyment of life does not end with the diagnosis. Life has changed, but Kate and I continue to be active. Even now as her memory fades and confusion is common, we have many good moments.

One of the other important things I have learned is something that helps to explain why we have gotten along so well. I credit Judy Cornish and her book, The Dementia Handbook. Let me briefly summarize the point she makes for those who are not familiar with her book or my posts about it.

Cornish talks about two general categories of abilities that everyone possesses, those that are “rational” and those that are “intuitive.” Rational abilities include the kinds of things we learn in school like the names for people, places, historical events, and procedures for accomplishing specific tasks. Rational thought or abilities are very important, but not everything.

Cornish gives special attention to our intuitive abilities. These involve our ability to directly experience the world around us via our senses. Her point is that dementia has its greatest impact on our rational abilities. When people with dementia lose their memory, they lose the facts, figures, names, and procedures that they have accumulated over the years. Much of our everyday life depends on this kind of knowledge. That’s the bad news.

The good news is that much of the pleasure we enjoy in life derives from our intuitive abilities, and people with dementia retain those for a very long time, often near the end of life. This has been of critical importance to Kate and me. It has given us many happy moments.

I wish I could say that I had this knowledge or insight when we first received Kate’s diagnosis. I didn’t. I had no idea of the role her intuitive abilities would play in our lives. All I knew was that we wanted to make the best of the time we had together. We chose to do more of the things we always enjoyed. That included travel, musical and theatrical events, and being with friends. As her caregiver, I took the responsibility of organizing our lives around these things, and we have both been happy.

Over the years I have experienced a change in what gives me pleasure. It is not that I experience any less pleasure from all the other things we have done. It is that I now derive just as much pleasure from seeing Kate enjoy life. There are lots of these things that bring me pleasure. Most of them are little things that mean a lot.

One of those is her sense of beauty. She often comments about the beauty of the trees and shrubbery we see everywhere. That frequently involves the dense growth of trees and brush on our neighbor’s property behind our house. Sometimes it is driving along a highway or the streets here in Knoxville. It also includes the jigsaw puzzles she works on her iPad. She often asks me to look at puzzles she thinks are particularly beautiful or cute. The latter usually involves cats or kittens.

Kate also enjoys her family photo albums. I enjoy watching her leaf through the pages and hearing her comments as she goes through them. That is especially true of the “Big Sister” album her brother Ken made for her. She loves the cover photo of the two of them when they were about four and two. I also enjoy sitting down beside her and going through the album with her.

Recently, she has talked about the beautiful lights she sees at night. Many of these are Christmas lights, but just as often they are the headlights and taillights of the traffic we pass. Often lights obscure what would otherwise be rather mundane retail stores. The other night we walked by a wig shop that is next door to the place we get pizza. She commented on how beautiful it was. I would say it’s a pretty tacky shop in a strip center that is also tacky. It’s hard for me to see the beauty, but I enjoy seeing her enjoy simple things like this. She also takes more pleasure in sunsets than she used to.

She has always taken an interest in small children and babies. That has increased since her diagnosis. She almost always comments on the children she sees when we are out. When we are entering or leaving a restaurant as she did this past Sunday, she frequently stops to speak to a child and the child’s family. She always tells the family that they have an adorable child.

I find that she is less critical in her evaluation of musical and theatrical performances. That’s a good thing in that it enables her to enjoy performances that she might not have enjoyed as much in the past.

Last night I pulled up a series of YouTube videos of Christmas music by the Tabernacle Choir. This was one of those time she was so drawn in by the music that she put down her iPad. That doesn’t happen often. She was happy. I, too, was happy, not just because of the music, but I like to see her happy.

I am also touched when she seems to recognize me and express her appreciation. Yesterday morning she got up early to go to the bathroom. I took her and brought her back. As I pulled the covers over her, she said, “Thank you. You always know what to do.” I said, “I love you.” She said, “I love you too.” She paused and said, “What’s your name?” I found it touching that even though she couldn’t remember my name that she was still able to retain her feeling for me.

During the evening and when we went to bed, she seemed to recognize me as her husband. She didn’t ask my name except once at dinner. When we went to bed, I told her I love her. She said the same to me.

I consider all of the experiences above as good ones. They are the kind of things that make me say we have been able to live well as we live with Alzheimer’s. And all of them can be enjoyed at a time in our journey when Kate’s rational abilities are almost gone. I’m looking forward to more good times.

Special Moments Yesterday

Not every moment of every day is special. Some are discouraging, sad, or trying. As I have noted many times, we have experienced relatively few of those. I find that we have enough uplifting moments to offset those I would like to forget. Some of those involve planned events like our regular dinners at Casa Bella for their music nights or our visits with family and friends. Many of them occur without any planning at all. They just happen without any prior expectation. That was the case yesterday.

It was a day for the sitter. This was only the second time that Valorie has been with us. She will now be our regular sitter on Mondays. I was especially eager to get Kate up a little earlier than usual. As time passed and Kate had not gotten up on her own, I began to think of a new plan for the sitter. I decided to let her sleep until 11:00. That would leave an hour for her to get showered and dressed before I left at noon. It would relieve me of the pressure of getting her up and dressed and to Panera for a sandwich before I left. I would simply let the sitter take her to lunch while I go to Rotary. Assuming it worked, it would be something we could do on a regular basis from now own.

At 11:00, I went into the bedroom and sat down on the bed next to Kate. She looked up at me and smiled. We began a fifteen-minute conversation that for me was as tender a conversation as we have ever had, and she didn’t even know my name.

RICHARD:               “You look relaxed.”

KATE:                       “I am.”

RICHARD:               “I’m glad.”

KATE:                       “Where am I?”

RICHARD:               “You’re in your very own bed in our house in Knoxville, Tennessee.”

KATE:                       “We have a house?”

From this point, we went through our usual conversation, at least in the words that were spoken. She wanted to know my name, her name, and her parents’ names. If you read these posts with any regularity, you can pretty easily grasp the content of the conversation. What was different about this one was the tone. She was very relaxed and sleepy. I responded in kind. It was much more like a father talking with his young child. She was trusting me as the person with the answers to her questions. I am touched by her growing dependence.The difference between this situation and with a child is that she can’t remember. A child can or will learn. That’s not going to happen with Kate.

Our conversation ended when she said she was sleepy and wanted to rest some more. I explained that I would be leaving and that Valorie would be with her. She didn’t remember Valorie, but I told her she was here last week and that she had liked her. I also explained that Valorie would be happy to help her with her shower and clothes if she needed help. She was comfortable with that, and I left her to rest. Equally important was the fact that I was comfortable. I let go of my desire to get her up, dressed, and to lunch. I accepted that this change needed to occur. It enabled me to have an easy conversation with Kate rather than pushing her to get up when she really wanted to stay in bed.

When Valorie arrived, I explained that Kate was still sleeping and talked with her about helping her get up and to the shower and dressing. I made it clear that this was the first time anyone else had helped with these things but that I thought Kate would be cooperative. When I arrived home, they were both in the family room. I walked Valorie to the door. She said she had helped Kate with the shower (not sure exactly how much help she had to provide) and getting dressed and that Kate accepted willingly. I was delighted. I have known we would face this step sometime and wondered how we might make a smooth transition. It turns out to have been easier than I expected. Of course, it may not be this way every time, but it’s a great start. Having the sitter assume this responsibility will ease my stress a good bit. I won’t have to worry about pushing her to get up.

After Valorie was gone, Kate and I sat side by side on the love seat in our family room and looked at one of the photo books of her family. This is one put together by her brother Ken and her cousin Sharon. It is the story of the Franklin Family Veil. One of Kate’s aunts bought the veil in Brussels in 1924 for her wedding. It has been worn by many brides in the family since that time. It contains a bit more narrative than some of the other photo books. I read to her, and she loved seeing the photos. I was touched again to share in that moment.

I try to make a point of moments like these because it is so easy to think her memory loss would prevent our experiencing such pleasures. It is true that there are things we did before that are no longer part of our lives, but much of that is offset by other things that she can appreciate. There will be a time when those will diminish as well. I’m not going to worry about those right now. I’d rather focus on these special moments that still come our way.

A Different Kind of Monday

So much of my attention is focused on Kate and the changes she experiences that I often overlook the fact that change us occurring for everyone on a daily basis. I think of that now because Kate hasn’t even stirred yet, and I know this Monday will be different for us. Last night, I received a phone call from the agency that provides the sitters for Kate. Marilyn, who was supposed to be here from noon to 4:00 is sick and will not be able to come. They were quite willing to send a new person, but I declined. I would rather change my plans for the day than bring in a sitter that Kate has never met. Actually, I am rather glad to have another day without a sitter.

Kate’s morning routine continues to be erratic. After thinking that she was settling into getting up late, she got up early several days in a row. The past few days she has gone back to sleeping late. Yesterday was another day when I had to get Kate up earlier than she wanted. Fortunately, she was very cooperative, but I felt bad about it. She has been very tired in the morning. I thought it might be good to let her sleep this morning but knew that the sitter comes at noon on Mondays, and I didn’t want her to wake up after I had left for Rotary. It’s not that I don’t think she could handle it. I just know that she often needs my help when she gets up. Of course, at some point, I will probably have a sitter to help in the morning. I don’t think either of us is ready to do that right now.

I often mention that Kate either sleeps late or surprises me by getting up early. She has experienced one other change in the past week or two. She doesn’t seem to go to sleep as quickly as she used to. There are some nights when she hasn’t gone to sleep as long as an hour or two after going to bed. I don’t ever recall that before. Of course, that could easily play a role in her needing to sleep in the morning. At dinner, she frequently tells me that she is going to “crash” early; however, she seems to get her second wind after we are home. When she was on Trazodone, she went to sleep rather quickly, but I don’t want to go back to that just yet. On the whole, I think she has been more alert since we discontinued it six or seven months ago. Her only groggy moments occur when she wakes up in the morning. Trazadone could exacerbate her confusion.

At any rate, I don’t plan to go to Rotary today. I also had a United Way meeting scheduled at 2:00. I will skip that as well. Kate and I usually have nice days together. I’ll take advantage of this change in the sitter’s schedule to enjoy the day with her.

I should add that yesterday was another good day. Since Kate got up late, we went directly to lunch. That gave us a brief time at home before going to see the musical Buddy at one of our local theaters. We had a good time. From there we went to dinner and then back home to relax the rest of the evening.

Increasing Dependence

I suspect becoming dependent on others is something most of us want to avoid. I find this is true among most of the seniors I know. Yet there is a certain inevitability if we live long enough. Alzheimer’s has been the big factor in Kate’s dependence on me. She got along reasonably well until she stopped driving. Since that occurred following an accident, she never fought losing her car. She was bothered, however, by her dependence on me to get her from place to place. Even though she was getting out, I think she felt tethered to the house. That may account for why she still doesn’t like to stay around the house for extended periods of time. She likes to be out, and I have enabled her to do that.

Of course, there are some things we are glad to let others do for us. Kate has never shown any concern about my taking care of meals or the laundry. Neither has she been bothered my role in giving instructions to our housekeeper. One surprising area in which she has not asserted her independence is shopping for clothes. I can’t remember the last time she expressed an interest or need to buy new clothes. At first, I would initiate a shopping trip. She found it confusing to look through so many different options. Sometimes she bought things that she never wore. Gradually, I started shopping without her. Now I buy everything online. It is easier for me. The only problem I’ve had is getting the right fit. It seems we have settled into the right sizes. That is working well.

I think that retaining independence is even more important when it comes to the many everyday tasks in which we are involved. That is especially true for those of a personal nature like getting dressed, bathing, and using the toilet. Kate has often asserted her independence in these areas. For a long time she resisted taking my hand when going up or down stairs or curbs or getting in and out of the car. Now she is inconsistent. Sometimes she welcomes my hand. Often she asks for it. I am accustomed to her saying, “Hand” as we approach a curb.

Right now we are going through a transition to her becoming substantially more dependent. Until the past six months or so, she has resisted my involvement with her clothes. By that I mean selecting or helping her select what she wears. We are now coming close to my picking out everything she wears. She seems to appreciate this. I think it’s a little like shopping. There are so many options that she gets confused.

The latest change that has occurred in the past week or ten days is her asking for and/or accepting my help with dressing. It is only in the past few days that she has asked my help fastening her bra. That looks like something I will be doing a lot of from here on out. For weeks or months, she has asked my help in determining which is the front and which is the back of her pants. Now she is asking me to help putting them on. The same is true for her tops, and yesterday, she gave me her socks to put on for her.

She has always been a little slow to wake up in the morning. That is even truer now. She often seems very confused. This morning I checked on her and discovered that she was awake but still in bed. I asked if she wanted to rest a little more or get up. She wanted to get up. She looked like she didn’t know what to do. I suggested she take her shower. She asked where. I told her in our bathroom. Again, she asked where. I pointed to it. Then she asked me to help her up. Once she was up she took my hand and wanted me to walk her to the bathroom. When we got to the bathroom, she said, “What now?” I told her to take off her gown, and I would start the shower.

At moments like these, she is almost completely dependent, but once she got in the shower, she got along all right. I should say until she got out. Then she wanted my help getting dressed. She still has some ambivalence about my help. Sometimes she will say, “I don’t really need your help, but I feel more comfortable (with it).” She often says the same thing when taking my hand going up and down curbs. As you can tell, we are entering a new stage that is different for both of us. We are both adapting.

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.

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.

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.

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.

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.