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Sometimes it’s hard to be independent.

I’ve mentioned in other posts that Kate is becoming increasingly dependent on me. While she is accepting and requesting my help, there are still plenty of occasions when she prefers to do things on her own. It is especially difficult for me to judge whether or not she wants help is when she is going up or down stairs or curbs. It seems like half the time she does and half the time she doesn’t. I try to handle this by standing in front of her ready to give her a hand if she wants it. If she is behind me when we approach a curb, I often hear her say, “Hand.” Then I turn and extend my hand. Just as often, I extend my hand when she hasn’t asked only to have her refuse to take it.

It is similar with her clothes. Increasingly, she wants my help, but many times she doesn’t. Yesterday morning in Chapel Hill, I had put her clothes out for her. When she started to get dressed, I told her to let me know if she needed my help with anything. She wanted to do it without my help. In a few minutes, she was about to put on her pants. She had trouble determining the front from the back. That caused her to ask me to check to see that she had it right. She didn’t. She thanked me. Then she proceeded on her own. At one point, she got her foot stuck in the pants leg. She had to ask for my help. I am glad that when this happens, she doesn’t seem to be irritated with herself for not being able to take care of it by herself. On the other hand, she often makes reference to her making mistakes. She is very conscious of the problems she has handling many daily activities. I am sure that is what leads her to thank me so often for taking care of her. She is very appreciative, and that goes a long way to reinforce my desire to help.

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Our Visit With Another Longtime Friend

We got in another good visit with the Stones yesterday at lunch. Dot had an obligation at church and joined us a little later. That gave Reggie and me and chance to catch up on a number of old friends and colleagues from our graduate school days. Although he has had a number of TIAs, I was impressed with his memory. In most cases, I thought his long-term memory for those days was better than my own.

Before meeting them, Kate repeatedly asked me their names and tried to remember them. It was impossible. Once again, she handled herself well. At one point after Dot had joined us, she said something about Dot’s manner or personality that was very complimentary. It was a reminder that although her memory is virtually gone, she is still able to perceive certain qualities in people. I wish I could remember exactly what she said. It may have been something about Dot’s smile that she felt conveyed a warmth that Kate liked. I have noticed that she often comments when she sees smiles that appeal to her. That is especially true with photos. It may also be a reminder of how important a smile can be for anyone in social encounters.

We (I) left the Stones on a high note. It had been wonderful seeing them again. I was glad we had made the trip. For Kate, the experience was different. She did not express her feelings, but I could tell she got along well during our time with them, but that her memory of them was gone right after we left them. Even while we were together, she couldn’t remember their names. When Reggie got up from the table to go out front to meet Dot, she said, “Who is he?” At no time did she remember that we were in Raleigh. That should not surprise me. She doesn’t remember when we are in Knoxville. It is interesting that wherever we are she tends to think we are in Fort Worth, her hometown. That connection is still alive.

After lunch, we drove over to Chapel Hill where Kate’s longtime friend, Evelyn Schmidt, had recently moved into Carol Woods, a continuing care community. We have always loved Chapel Hill. I was disappointed that Kate’s memory of the place is fading. Before coming last week, she spoke fondly of the town. Yesterday, she couldn’t remember it at all or why we were coming here.

Evelyn gave us a tour of her new home. It is set in the middle of a beautiful, wooded area. Of course, that is easy to do. One of the things we always liked about Chapel Hill is the trees. It is a deeply forested community. I loved seeing Kate’s reaction to Evelyn’s new residence. I mean the setting of the place, not the apartment itself. As we walked from place to place, she would wander away to the windows that open on to such scenic beauty. Her aesthetic senses were working on over time.

As we walked around, we met several of Evelyn’s friends who also live there. Interestingly, one of them received his undergraduate degree from TCU just a few months before I was a freshman there. He and Evelyn’s husband, were colleagues in the English department at UNC. Although Kate enjoys social encounters like this, her attention was still focused on the beauty around her. I’m not even sure she realized that he had been at TCU. If she had, she would have responded with more interest.

When our tour was completed, we went to dinner at a small French restaurant where we had a good meal and enjoyed conversation with Evelyn. Afterwards, we went back to Evelyn’s apartment that is still stacked with cardboard boxes from her move. We looked at some of her wedding pictures as we had done with Dot and Reggie. We had also attended Evelyn’s wedding. That was over 40 years ago. It was Jewish wedding, and I reminded Evelyn the impression that the stomping of the wine glass during the ceremony had made on our son. After that, he said he wanted to be Jewish so that he could break the glass.

We came back to our hotel, and Kate crashed immediately. She got up once about 1:30 this morning but is still sleeping soundly right now at 10:30. I’ll wake her shortly so that we can hit the road for Knoxville. I’d like to be back home for dinner.

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Yesterday Morning Conversation at the Residence Inn, Raleigh, NC

KATE:  Are you my father?

RICHARD:  No.

KATE:  Who is my father?

RICHARD:  Charles Franklin

KATE:  He’s nice.

RICHARD:  Very nice.

KATE:  Does he have children?

RICHARD:  Yes.

KATE:  Who are they?

RICHARD:  Katherine (Kate) Franklin Creighton

KATE:   She’s nice.

RICHARD.  Very.

KATE:  Who’s my father?

RICHARD:  Charles Franklin, and who would that make me?

KATE:  (No answer.)

RICHARD:  I’m your husband.

KATE:  (with a grimace, but joking) Oh, no.

RICHARD:  Yes, for 55 years.

KATE:  That can’t be.

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A Short Trip to Visit Long-Time Friends

Friday, we drove to Raleigh to visit with our friends, Dot and Reggie Stone. The trip seemed like a long one. Of course, it was compared to our typical trip to Nashville. We ran into a good bit of construction. It took us almost an hour longer than usual, but it didn’t seem to bother Kate. She was quite relaxed. I should add that she is usually peaceful in a car. That is one of the reasons I started our Saturday and Sunday lunches at restaurants that are 20-25 minutes from our house. I’m not sure how much she slept, but her eyes were closed most of the way to Raleigh. She talked very little.

I am trying to be especially sensitive to her response to this trip. In some ways, it is a test of our ability to make our planned trip to Texas for Thanksgiving with our son, Kevin, and his family. The other day he asked me if I thought we would be able to make it. I told him I would know more when we get back home Monday night.

I can see already that there is an extra amount of confusion that occurs when we travel. If she gets the least bit confused knowing where to go in our own home, you can imagine what it is like when we are in strange places. Nothing is the same. Not even the Paneras. <G> Yesterday morning I saw a tweet that indicated the length of short-term memory for someone well into dementia is 3 seconds. That’s a pretty good estimate for Kate, sometimes even less. This confusion means that she is asking “Where are we?” much more than at home.

Yesterday, we spent a good bit of time with Dot and Reggie. I prepared them for the fact that Kate often sleeps late and that I needed to be flexible regarding our meeting time. I was quite surprised when I got back to the room after breakfast to find that she was up and preparing for her shower. That was about 8:30. As I have done in the past, I made a sign telling her that we were in the Residence Inn in Raleigh, that I had gone to breakfast and would be “back soon.” This time it didn’t work. I put the sign right next to the clothes I had selected for her. I figured (incorrectly) that she would see the sign if she got up before my return. I was only gone about 20 minutes. When I asked if she had seen the sign, she said, “What sign?” I showed it to her. She had no recollection. I have no idea if she missed the sign or forgot that she had seen and read it. The good news is that she wasn’t worried that I was not there. Maybe the fact that she doesn’t see me when she gets up everyday has developed a comfort level. I don’t know. It’s another one of those things that is impossible to know. She can’t tell me how she felt, and I can’t get inside her brain to see for myself.

Because she was up early, we had a little time before meeting the Stones shortly for lunch after 11:30, so we stopped at a nearby Panera (of course). Between the time we left the hotel and the time we met Dot and Reggie, Kate continually asked me to tell her their names. I would tell her. She would try to repeat them. Then I would tell her again and so on. At one point, she got confused and thought we were also meeting our children, so she also asked their names. When I told her we wouldn’t see Kevin and Jesse, she was relieved. She seemed nervous enough about getting together with the Stones that adding the children seemed overwhelming. In situations like this, I almost always tell her that it isn’t important for her to remember the names, but she worries nonetheless.

It turned out we all had a good time and enjoyed good meals with a terrific tiramisu for dessert. It had been years since we had been together, but we picked up right where we left off.. It would be no surprise to people who know us that Dot and I talked more than Kate and Reggie, but I was pleased they contributed their part to the conversation as well.

After lunch, we went back to Dot and Reggie’s place. They have lived in a continuing care community for five years. I was interested in hearing about their decision, the move, and overall how they felt about being there. They have a very nice two-bedroom apartment overlooking a beautiful stand of trees. Kate and I both admired the view from their living room and the adjoining balcony.

I had not planned on our staying too long, but Kate seemed to be getting along so well that we were there until about 4:00. That’s a long time for Kate to stay engaged. By the time, we left she was tired. It was a successful visit. In a brief conversation with Reggie after lunch and an exchange of text messages last night with Dot, it looks like the Stone’s impression was similar to my own. I thought Kate engaged her social skills beautifully. I also think Dot did some things to bring Kate into the conversation. She showed us pictures from their wedding 25 years ago. It was interesting to see how young we all looked at that time. Kate was particularly drawn to pictures of their granddaughter. As I have mentioned before, she loves children, and the granddaughter is adorable. That’s a winning combination.

We came back to the room for little over an hour before going to dinner. We didn’t need much after our lunch, but that didn’t make any difference in our eating last night. Once again, we topped off the meal with a dessert. This time it was Key lime cheesecake.

Today we will meet Reggie for lunch. Dot has an obligation at church and will join us a little later. Then we’ll go to visit another friend whom Kate has known since our undergraduate days at TCU. We’ll have dinner with her this evening and return to Knoxville tomorrow.

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Kate’s memory is fading quickly.

There is no way that I can measure the speed at which Kate’s recent decline in memory has occurred. I only know that she has changed more in the past two months than I can recall for any period since her diagnosis. It is no wonder that she has periodic attacks of anxiety. It’s harder to understand why she hasn’t had more.

Her sense of direction has always been poor, but her difficulty knowing where to go in the house has surprised me. I hadn’t really thought about this before. I guess I assumed she would be on autopilot in the house forever. To some extent, she still is. Yesterday, for example, she said, “Where is the bathroom?” I told her I would show her and walked her toward our bedroom. As we were leaving the family room, she turned and went into the guest bathroom. That is the one she has used most often. She must have recognized where she was the moment she walked out of the family room.

Earlier today at Panera, I asked someone I know at a nearby table to watch her a minute while I went next door to make an appointment for Kate to get her nails done. When I came back, she said, “What’s my name?” I gave her the full name, and she asked me to repeat it.

She got along well yesterday. I don’t mean that her memory was any better. I mean that she isn’t showing any sign of unusual worry or concern over her memory. I sat in the waiting area of the nail salon while she is finishing up. She  handled herself well with the person taking care of her. When I left her, there was a brief moment when she seemed to be concerned that I was leaving her. I told her I would be next door at Panera. On the whole, it is still amazing how well she gets along in brief social encounters.

Last night, we went to Casa Bella for Broadway night. We had another good evening, but it was a very challenging one for Kate. We sat at a larger table, and the entire crowd was noisy. There was absolutely no way that she could keep up with the conversation. At first, she tried. That required her asking others or me to repeat things just said. It didn’t take long before she just bowed out of the conversation.

When we got home, she walked to our bedroom without any problem. In a few minutes, I went to the bedroom. No lights were on. She was standing in the middle of the bedroom. She asked where she should go. I told her she could stay right there in the bedroom and that I would get a night gown for her. She went through the usual challenge of getting her clothes off and putting on her gown. Sequencing is a problem for those with dementia. Getting dressed or undressed involves sequencing. Now that I’m watching and helping her dress, I am getting a better understanding of this issue. I am beginning to help by telling her what to do at each step (take off your shoes, your socks, etc.).

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The way we think about our loved one’s behavior affects the way we respond to it

Sociologists look at all aspects of social behavior as components of social systems. When there is a change in one part, it has consequences for the others. We commonly hear naturalists who view the natural world in the same way. It’s easy to accept this point of view but not fully grasp its implications. For example, I am sure that quite a few people who lost power during Hurricane Florence found themselves saying, “So the power’s out. I think I’ll just . . .” only to realize that whatever they were going to do also depends on electricity. I know that every time I have the slightest injury to any part of my body, I discover how often I use that little finger, toe, etc. Little things really matter.

Over the course of Kate’s life with Alzheimer’s, l have encountered numerous instances of the importance of memory that I didn’t think of before. I am sure other caregivers encounter the same things day in and day out. One of the most common, and seemingly obvious, ones is to give instructions to a PWD with the expectation they will remember what you have told them. This is really easy to do for a long time after a diagnosis. I am sure one of the reasons is because the memory loss is not 100%. At first, Kate was still able to remember most things. As time has passed, she remembers less and less. Caregivers’ expectations don’t change as easily. On the whole, our loved ones continue to appear very normal, and we continue to treat them that way (as though they don’t have dementia). Thus, we often find ourselves frustrated when we should have understood it was our expectations that got us into trouble.

One of the most relevant examples for me right now is the tendency of caregivers to become frustrated when their loved ones ask the same questions over and over. We do this because we haven’t adjusted to the fact that they can’t remember the answers. When our loved ones change, we have to change the way we think. If not, we experience lots of frustration or irritation.

That takes me back almost eight years ago when Kate was diagnosed. Prior to that, I was pretty sure she had dementia, but I hadn’t fully changed my thinking. As a person with OCD tendencies, I found myself irritated by the disorder I saw in her behavior. The moment I heard the doctor tell us the results of her PET scan, I reinterpreted everything she was doing. That alone was worth our getting an official diagnosis. It made me a more understanding husband. That hasn’t meant that I haven’t been frustrated at times. It means that I understood why she was so disorderly and no longer blamed her. I knew she couldn’t help it. That lesson has served me well. Last night at dinner, Kate asked me at least five or six times where we were (the city). That was in addition to the approximately same number of times she asked the name of the restaurant. Each time she asked, I was able to respond as though it were the first time she asked without experiencing any frustration. I could only do that by fully recognizing that she can’t remember. Furthermore, she asks because she really wants to know. If I were in a city or restaurant whose name I didn’t know, it would seem quite reasonable to ask. I also realize that others may not be able to change their thinking so easily. I feel for them. That makes their lives so much more frustrating.

As Kate’s memory has gotten worse, I see new consequences of that loss. In particular, I am thinking of her memory of the various rooms in the house and the location of things in cabinets and drawers. I can’t know for sure what’s going on in her brain, but I’m very much aware of things that disturb my sense of order. For example, several times lately, I’ve noticed she has opened the drawers of my bedside table, taking out a few things, and leaving them on the table top. These are primarily catalogs and various cables and related electronic accessories. It has puzzled me as to why she was doing this. She had never done so before.

Since then, I’ve also noticed that she has been going through other cabinets, drawers, and closets in the house. It’s easy to notice because she never closes any of them. (That can be a problem for someone with OCD.) Yesterday was one of those days when she neglected the clothes I had picked out for her and made her own selections. I found that she had picked out three pair of socks, two pair of pants (but not a top) and taken them to the bathroom next door to our bedroom where she dropped them on the floor. (That’s the bathroom where she fell out of the shower the other day. I’m trying to steer her away from that one to our bath.) She had taken two towels off the towel racks and threw them on the floor as well as two others she had taken out of a cabinet. I took her clothes back to her room to put them up. When I did, I discovered all the cabinet doors were open in that bathroom.

All of a sudden it hit me. She’s not randomly opening drawers and cabinets. She doesn’t know where her clothes are and often doesn’t notice the clothes that I have picked out for her. That’s true even though I have carefully placed them on the chair next to her side of the bed. Now I see her behavior as quite logical. She’s looking everywhere that one could possibly put clothes. Sometimes it doesn’t take her long to find them. That’s when she opens fewer drawers. Other times it takes a lot of searching.

This also reminds me of something that seems to be getting increasing attention lately.  Most of us have heard that anger can be one of the symptoms displayed by someone with dementia. Some authorities say that is inaccurate, that anger and displays of aggression are not direct outgrowths of dementia at all. Instead, they suggest that the symptom is the PWD has misunderstood the situation. Thus, if we were to interpret the situation in the same way, we might think anger is a reasonable response.

I don’t pretend to be an authority on this matter at all, and, fortunately, haven’t had to deal with anger. I do believe, however, this is just one more example of how differently we might interpret and respond to the behavior of a person with dementia if we had a better understanding of the disease. All of us are in the learning stage, especially those who are dealing with a recent diagnosis.

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Another Difficult Moment

About 7:45 this morning, I went to the bedroom to check on Kate. I don’t know why. Knowing that she sleeps much later than that, I usually don’t check on her before 9:00 or 9:30. I am so glad I did. As I walked in, I could hear her whimpering. She has never been one to cry until the past few months during when she has experienced anxiety attacks and two recent moments when she was very sentimental. Those experiences immediately made me think about her anxiety over her memory loss. I am sure I was right.

I got in bed and held her. I asked what was wrong. At first, she didn’t say anything. She just continued to cry. She often has trouble expressing her feelings. I continued to hold her. A few minutes passed. Her cry became more than a whimper. I said, “You sound like you’re afraid. Are you afraid?” She held her head up and nodded. I said, “Life can be hard, can’t it?” Then I asked “What are you afraid of?” She said, “Losing you.” I said, “You could never lose me, I will always be with you.” Another few minutes passed. She continued to cry softly. Then she said, “I don’t even know who I am.” I told her and then told her about her parents and our children.

I have a wireless audio system that I can control with my phone. I pulled the phone out of my pocket and turned on an album of Russian sacred music. It is very peaceful. She said she liked it. I continued to hold her, and she slowly began to stop crying. Several times she said, “I don’t want to lose you.”

After a while, she said she would like to lie in bed a while. I told her I would get my computer and sit in my chair next to the bed. She rested another 45 minutes. Then she got up. She looked a little confused, but she wasn’t crying. I hope that she has already forgotten what had happened. I just wish I could keep this from happening again.

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Predicting the Future: Part 2

Since writing Part 1 the other day, I had a conversation with someone who asked what I planned to do in the long run with respect to Kate’s care. I told him that was a good question and gave him the following answer.

My desire has been and still is to keep her at home. There are several things that have influenced me to feel that way. First and foremost is the fact that three of our four parents remained at home. After Kate’s father had a stroke, he required round-the-clock care. Kate’s mother learned of someone who could move into their home and provide that care. Her father only lived four months after the stroke. That arrangement worked well. Her mother had a series of TIAs that led to vascular dementia. That also led to the need for 24/7 care. Through their mother’s friends, Kate and her brother, located someone who moved in with her and supervised three shifts of people who provided the needed care. After a year or two, the friend who had moved in to serve as a supervisor had her own health issues. That is when Kate and I brought her to Knoxville to live with us. She lived with us five years and three months with round-the-clock care provided by shifts of CNAs we engaged through an agency.

During this same period of time, my mother was diagnosed with dementia. My dad did not have the same financial resources as Kate’s parents, nor did he have the inclination to have help in their apartment. My brother and I tried any number of times to engage in-home care or to move them to an assisted living facility. Dad tried in-home care but didn’t like it. He ended up caring for my mother at home the entire time. The only help he did accept was an adult day care center. He dropped Mom off every Wednesday morning so that he could attend his Kiwanis meeting and shop for groceries. I regularly brought in meals the last year or two. Before that Dad shopped and cooked on his own. I have a new-found respect for him now. He said next to nothing about any problems he had taking care of her. I was able, however, to observe the toll it took on him. I was quite relieved to discover that he bounced back after her death. He even had a significant other who developed vascular dementia and cared for her until her death. Dad lived 11 years after my mom died and 4 years after his significant other died. He was quite a man and caregiver.

With that background, I was naturally inclined to keep Kate at home. If Dad could do it, I could as well. Besides we have long-term health insurance that will cover a large portion of the financial costs. Dad didn’t.

Since Kate’s diagnosis, I have learned much more about dementia and caregiving. I’ve read a lot of books written by caregivers. I have also followed several different forums for caregivers of PWD. It has also been almost 7 years and 8 months since the diagnosis. I’ve had vastly more personal experience as a caregiver than I had with our parents. All of that gives me a better grasp of the challenges to be faced than I did before. For quite a few reasons I have mentioned previously, I’ve had the good fortune of having a load that is  lighter than that of many people in my shoes.

That leads me to an important conclusion. I don’t believe there is one approach to caregiving that works for everyone. I believe that each caregiver has to assess the numerous ways to provide care. What are the pros and cons of care at home? Care at a facility of some type? Having a good idea of the options that are available will help the caregiver and family determine what is most desirable.

Then it is time to get practical. Do we have the financial resources available to have most or all of the options? (That rarely happens.) How well-suited am I to play the role of a hands-on caregiver? If I want to bring caregivers into the home, should I go through an agency or try to hire and manage caregivers? In either case, what kind of manager would I make? Am I ready to have people in the home 24 hours every day. What about my own family situation? What other responsibilities do I have? Am I employed now, or will I have to continue working to meet expenses?

Caregivers also need to be honest with themselves concerning their own personalities and those of the person needing care. Some people are natural caregivers. Others are not. Most of us fall somewhere in between. I continually ask myself the questions above. So where does that leave me? My desire has always been to keep Kate at home for the the entire time. Am I beginning to have reservations as she enters the final stages of her illness?

My current answer to those questions is that I am still optimistic about staying the course. Nothing new has happened to change my mind. On the other hand, I continue to keep all my options open. I do that because I don’t know what lies ahead. Kate has been very easy to care for up to now. Based on the experience with my mother and Kate’s mother who were also easy to care for, I believe Kate’s attitudes and behavior will continue to be very much like theirs. I should also add that I have never thought of providing all of her direct care myself. I have always intended to work through an agency who will provide 24/7 care. Thus, I am optimistic, but I believe I will always keep an open mind concerning what is best at the time.

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Confusion in the Evening

As we were driving home from dinner last night, Kate said, “Everything looks so different to me.” I wasn’t sure if she just didn’t recognize what she was seeing or if she thought she was in some other place than Knoxville. It wasn’t long before I discovered she was mixing up Knoxville and Fort Worth.

When we drove up to our house, she said, “I remember this house.” I said, “It’s been a nice place for us to live.” That made me think she knew that we were home, but I wasn’t sure. After we were inside, she said, “I’ll follow you.” This is becoming a pattern. She is definitely unsure of herself in the house, that is, unsure of which room is which and where she should go. I told her to follow me and walked into our family room. She said, “It looks so different now.” I said, “So you think it’s changed.” She said, “Oh, yes.” Then she said, “This is a nice room.” She looked around the room as though it were a house we had lived in years ago and said, “This is a nice house.” I agreed with her.

Then she asked me what she should do. I told her she could relax in the family room for a while if she wanted and that we might watch a little of Fiddler on the Roof later. That seemed to suit her. She took a seat in the family room and picked up her iPad. I went to our bathroom to prepare her meds for the week ahead. When I returned with her evening meds, I found that she was not working on jigsaw puzzles but looking at photos. Recently, she has been accidentally touching the photo app as opposed to the puzzle app. She wasn’t unhappy about it, but she said she was trying to find photos of TCU. There weren’t any on her iPad.

I sat down with her and did a Google search for the photos she wanted. We looked at some of the recent ones. The she wanted to see old photos. I found a few of those as well. When we had finished, she said, “Sometimes I wish we had gone to school here.” I said, “Do you mean at TCU?” She said yes. It was then that I understood that she was confusing Knoxville with Fort Worth. She thought we were in Texas. I told her we had met at TCU. Then she said how glad she was about that. It wasn’t long after that when she said something about our living in this house. Once again, it seemed like she was responding to some aspects of her surroundings as though she was in Fort Worth and others as though she knew she was in Knoxville. This is another example of the kind of things that don’t make sense to someone who doesn’t have dementia but seems quite all right to a PWD. The best way I can think of it is to compare it to dreams we sometimes have. It is not unusual at all for contradictory or impossible things to happen in the dreams of normal people. This kind of experience seems to invade the world of PWDs.

There are moments, however, when I will say something that causes her to see that she has done something strange. This afternoon, for example, before we left for dinner, she had gotten an old Time magazine, a container of deodorant, a brass knick knack that looks like a business card holder, and a ceramic coaster to take with her. As she did the other night, she saw a picture of our son and asked about bringing it and a picture of her father with her. I asked where she thought we were going. Then she put the things down and said, “I can just leave them here.” This was said without any anger or disappointment. When this happens, it appears that she recognizes that she must be doing something wrong and stops.

Before going to bed, we had two other instances of her not being able to find me in the house. That wasn’t because I was in an unusual place. In fact, I heard her call me.  “Richard, where are you?” I said, “I’m in the bedroom.” She didn’t come in. Then I heard her ask again. This time she found me. I think she had picked up the direction by the sound of my voice and not by knowing where the bedroom is. This kind of confusion is opening a whole new experience that I hadn’t really thought much about. I wonder how she will handle such things with the sitter. Kate may not want to ask her where she “should go” or do. I plan to let the sitter know that she is forgetting her way around the house.

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A Very Tender Moment for Both of Us

People who know each other well often find that they understand the thoughts and feelings of the other without the expression of words at all. Last night, Kate and I had what I believe is one of those experiences. We went to our regular pizza place for dinner. We normally go on Friday night, but we went to a more special place that night. It is a much more romantic place than where we have our pizza. The pizza place is something of a dive, a really down home place where they specialize in all the Italian comfort foods – lasagna, spaghetti and meatballs, baked zita, etc. There is nothing romantic about it, but that is where we had a very touching moment.

We took a seat in a booth on the side of the dining room near the back. At first, Kate was quiet, not saying a word. Then with a touch of sadness she reached her hand across the table to me. I took her hand in mine, and she said, “Thank you.” I said, “For what?” She answered, “For taking such good care of me. You’re a good man.” At that moment, tears welled up in her eyes and in mine. I said, “We’re both getting sentimental, aren’t we?” She nodded. We didn’t say another word. We were silent for a few minutes. Then we went ahead as though that moment hadn’t happened.

I can’t be sure of exactly what was going through her mind, but here is what I think. She thanks me frequently, but last night was different. I believe she recognizes the fact that her memory is getting weaker and that it’s not going to get better, only worse. I don’t believe she remembers that she has Alzheimer’s or even remembers what that is. She only knows she is not functioning the way she should. I believe she knows our lives will not be the same again. Even if that is not precisely what she intended, I interpret her words as a way of saying goodbye.

Will I ever know what she was really communicating? Probably not, but it made me think of an experience our TCU friends Nancy and Charlie Hardwick had a few weeks before he died. He had shown signs of dementia a year or two before Kate. He looked up from his bed into Nancy’s eyes and said, “You know I’m dying, don’t you?” She did know, but she was surprised at his clarity in recognizing it himself.

I doubt that Kate goes so far as to see her present condition as a step in the dying process, but I believe she is coming to the conclusion that she won’t get better and is grateful that I am committed to caring for her whatever lies ahead. What makes me believe this? There are several things.

First, is that she has previously conveyed her awareness of her memory loss. Though it doesn’t happen often, she even says things like, “I don’t know what’s wrong with me?”  Second, she not only recognizes that she has a problem, she works hard every day to remember my name, the names of our children and grandchildren, what city we live in, the names of the restaurants we visit. She tries, often unsuccessfully, to repeat them as if she were trying to imprint them in her brain. She obviously cares. Third, although not all the time, she is bothered by her memory problem. Her two or three anxiety attacks have been ample evidence for me. Fourth, she frequently demonstrates an ability to correctly read what is happening around her. She understands matters of life and death and suffering. She is very responsive to news reports. While she can’t grasp the explanations of news, she frequently exhibits the appropriate emotional responses to them.

Finally, the emotional way in which she expressed her appreciation last night communicates that her sense of what is happening is far deeper than a casual instance of having a problem with one of her jigsaw puzzles and my helping her solve it. She knows she has a serious problem.

It wasn’t very long ago that I thought she would simply drift away without suffering any anguish over her illness. That is clearly not true. Now I am asking “How long will this last?” I really don’t want to see her enter the next stage, but I don’t like seeing her suffer.