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Travel

This is Thanksgiving week, and we leave tomorrow to spend the holiday with our son Kevin and his family. As you would expect, Kate and I are approaching this trip in very different ways. This is very likely her last trip to her home state of Texas. I have been thinking about this trip for months. Her feelings for Texas are actually stronger now than they were when she was younger, but one of the things that disappeared with her memory is the ability to anticipate the future. I have been telling her for weeks that we are going to be in Lubbock for Thanksgiving. I’ve heard that the estimated length of time that a person at this stage of dementia can remember is a matter of seconds. As a result, she has no idea that we are going. She will enjoy the visit with family and being in Texas “in the moment” as she does with all her experiences.

There is usually a bit of sadness associated with “last-time” experiences. I think immediately of the time when a child leaves for college or gets married. Parents know that their lives will be changed forever. The sadness brought on by those experiences is partially offset by the pleasure we derive from watching our children take their place in the world as adults. That is very different from the anticipated loss of someone who is approaching the end of life. I derive much pleasure from my recall of our lives together. I believe we have made the most of our time, not only since Kate’s diagnosis but from the beginning of our courtship. We will continue to enjoy life together as long as we are able. I have to say, however, I cannot escape the sadness of these last experiences. I believe that is as it should be.

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From Confusion to One of Our Tender Moments

This morning Kate didn’t know I was her husband. I am glad to say that had changed by this afternoon. I don’t mean all confusion was gone but that she at least called me by name and said something about our being married. As we drove to dinner at Chalupas, our favorite Mexican restaurant, she said, “Thank you for being so patient.” That began a conversation (“soliloquy” might be more accurate) that lasted for over an hour in the restaurant. There was much repetition as she said things like, “You are so patient with me.” “I like being with you. It’s not just that you take me places.” “I like the way you treat people.” “What would I do without you?” “You’re a natural caregiver.”

The tenderest moment came as we were finishing our meal. By this time I had reached across the table and taken her hand. She looked at me and said something complimentary. Then she started to say something else and stopped. She said, “No, that’s silly.” I pushed her to tell me. At first, she wasn’t going to say. Then she said, “Would you think of marrying me?” Before I could respond, she said again, “Oh, I know that seems silly.” Then I looked into her eyes and said, “I have a surprise for you.” She said, “What?” I said, “We are married, and I love you.” She was immediately touched and tears filled her eyes. Then I was touched, and here we were sitting in a neighborhood Mexican restaurant, a far cry from a romantic place.

Earlier today I read a tweet by Ann Campanella, author of Motherhood: Lost and Found. She said, “Blessings and loss are so often intertwined in our lives.” I replied that Kate and I frequently have such experiences. Little did I know that we would have one of those tonight. The loss of her not remembering that we are married was overshadowed by her ability to appreciate my caring for her, by her proposal of marriage, and her tender response when I told her we are already married.

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A Conversation at Panera

Kate’s being up so early this morning meant that that we also got to Panera early. I think this was the fourth day in a row that she was in a particularly good mood. She clearly recognized where we were as we drove up to the restaurant. When I gave her my hand to help her up the curb to the sidewalk, she didn’t want it. Then she quickly changed her mind, saying, “I didn’t really need it, but it helps.”

As usual, I got her situated at our table and went to the counter to order our drinks and her muffin. When I returned with the muffin, she noticed that I didn’t have anything at my place and wondered why. I explained that I had already eaten an omelet at home. She teased me a little saying, “You just had to have something healthy, didn’t you?” What was striking about this is that, except for lunch, I have only gotten something to eat two or three times in all the years we have been going there. This was the first time she has said anything.

For thirty minutes or so, she worked on her iPad while I worked on my earlier post. Then, I think I said something about her mother. I know that she asked her mother’s name. I told her. Kate said, “She was quite a woman.” and I said, “Your mother would be proud of you. Then she said, “Do you think so?” I said, “I know so.”

I proceeded to tell her one of the things that I knew her mother admired about her, the 19 years she served as the volunteer librarian at our church. As I have done a couple of other times recently, I told her about her work a little like telling a story. She was surprised to know she had served so long. I explained that she had the perfect combination of training, personal experience, and personality for the position and that no one filling that position had had each of those qualities. I told her how well-acquainted she became with the parents and children as well as the teachers and other church members. I also told her about the many people she had helped to find materials for some special purpose. My mention of specific things she had done, jogged her memory a bit. That led to her adding other things she remembered from those 19 years. It was a beautiful conversation, and I loved seeing how good she felt about the contribution she had made. The library really had become a vital place under her direction, and her mother really would have been proud.

Our conversation caused me to reflect a moment. Could memory loss affect my self-esteem? I always try to imagine what it must be like not to have a memory. I do know that Kate has said a few things over the past year that suggest many other people have something about which they can be proud and that she doesn’t. It is easy for me to imagine that if I had forgotten everything about myself, I wouldn’t be able to think of anything that makes me special. I might feel somewhat inferior to other people. This is an aspect of the disease I hadn’t thought about before. Kate hasn’t forgotten everything about herself, but she remembers less and less all the time. I try to bolster her ego in every way I can, but I plan to be more sensitive to this issue in the future. I want her to remember what makes her special.

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An Example the Strength of Feelings

Yesterday at my Friday afternoon coffee with Mark Harrington, I said something about Kate’s weakening memory for names. He said, “I’ll bet she still remembers some feelings.” I told him I had seen signs that he is right including her feeling about me as well as other family members and friends. Then I said, “I am sure she would not remember your name if she saw you, but she would probably think you are brilliant.” This morning he dropped by the house to pick up tickets to tonight’s symphony concert. I was outside when he arrived and chatted with him briefly. In a few minutes, Kate came outside. She walked over to Mark and gave him a warm greeting. We talked another few minutes. Then as he was getting in his car, Kate said, “You’re a good guy. You’re brilliant.”

He drove away. Kate and I turned around to walk back in the house, and she said, “What’s his name?” I said, “Mark.” She asked, “What’s his last name?” I said, “Harrington.” She said, “Oh, he’s brilliant.”

When Kate was diagnosed, I had no sense of things like this. They are things I have learned along the way, some by experience but many from things I have read. Either way, I think it is very important for all of us who care for someone with dementia to understand this. It means that even as some abilities diminish over time, others remain in place for a long time.

In our particular case, I am especially glad that Kate’s enjoyment of music doesn’t appear to have lessened at all. In fact, I think it is stronger now than ever before. I wonder if that might not be a direct result of losing some of her other abilities. It could be like someone’s losing her sense of sight but strengthening her sense of hearing. The important thing is to remember that a diagnosis of dementia doesn’t mean all is lost. If it did, our lives would have been very different.

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What is different between caring for a parent and caring for a spouse?

Sometime during the late summer or early fall of 1993, I received a call from my mother. Calls like this one were always from my mother, not my father. In our conversation, she brought up the topic of their planning ahead and thinking of moving out of West Palm Beach to some place that would be closer to either my brother or me. We didn’t settle anything in that conversation, but after that I talked with Kate and then Larry who talked with his wife. Together we decided that being near to us would be a good option, and over Memorial Day weekend in 1994, I flew to West Palm Beach and drove them to Knoxville. The movers delivered their furniture the following day.

Although I knew that my dad had had several medical problems over the years, I didn’t think that might be the motivation for their move. I still don’t know. I do know that three or four years later, the social worker at their gerontological practice informed us that Mom had dementia. She approached the subject with us very delicately, but we already knew. Exactly when we became aware I am not sure. It wasn’t right away. Now that I have had a little more experience with dementia, I feel sure that she was showing signs of dementia before their move. She died in 2002, four or five years after the social worker gave us the news.

I spent a significant amount of time with my parents immediately after they arrived in Knoxville and through her death. After her diagnosis, I was particularly attentive to helping Dad to the extent I was able. I was still working and traveling, but I was with them a good bit. During the last year or two of Mom’s life, I frequently took them an evening meal. Larry and I worked with the social worker to design a plan for their care as Mom’s condition worsened. Dad was never receptive to having anyone come in to help. Neither was he interested in moving to an assisted living facility. He didn’t have the financial resources to pay for it, but Larry and I were already subsidizing their income significantly and would have been willing to pay for it.

Looking back, I am amazed that Dad was able to handle her care so well. I never heard him complain. He did many things to keep her active. They delivered Meals on Wheels. They volunteered at a local senior center. They attended a local theater. They made a lot of friends. When she died at home, he was turning her every two hours. Fortunately, that lasted only a day or two.

I thought I understood exactly what he was going through as her caregiver. Since Kate’s diagnosis, I feel I really understood very little. I also feel quite different about Kate than I did about my mother. I loved Mom, but I never felt as troubled or sad as I have felt about Kate. I have also read a lot about other caregivers who cared for their parents. As a result, I have made two observations. First, I realize how easy it is for sons and daughters to miss the many signs of dementia. Second, I am often surprised at how long it takes for us to take action. These go hand in hand. Unless we are living with our parents, we don’t fully grasp the symptoms of dementia.

I don’t believe that I have felt differently about Kate’s Alzheimer’s than that of my mother’s because I loved Mom any less. I believe it’s because sons and daughters whose parent is not living with them never have sufficient information to fully understand what is happening. It is easy to miss. Many of the people who have known Kate have been surprised to know that she has Alzheimer’s as well as how far along she is. That is because they don’t have the same opportunity to observe all of the symptoms. They see her doing much better than they can imagine. They generally imagine the latter stages of dementia.  They don’t understand how much time there can be between the first signs and the state of a person at the end. In addition, they don’t understand that someone with dementia still retains many capabilities even as they lose others.

Of course, there is something more that makes me respond differently to Kate than to my mom. That’s the nature of the relationship itself. At least in successful marriages, the two partners live such intertwined lives that in a way each becomes a part of the other. At lunch on Tuesday, I noticed a “Yin Yang” tattoo on the arm of the hostess. I pointed it out to Kate. It was no surprise that is something that has faded from her memory. She asked about it, so I pulled up a picture on my phone and then explained the meaning of it. As I did, I thought it applied beautifully to our marriage and that of many other couples as well. In significant ways, we are very different personalities, but we complement each other. We also overlap in other important ways. During the past 55 years, we have shared many highs and lows together. There is no other person with whom I have shared so many significant experiences. In our particular case, that has been especially important in helping us adapt to the changes brought on by Kate’s Alzheimer’s.

It also means that what happens to her also happens to me. When she suffers, I suffer. When her life changes, my life changes. This helps me understand the difference in the way I feel about her compared to the way I felt about my mom. Not living with my mom, I never fully understood what she was experiencing. Perhaps more importantly, the love relationship between a husband and wife is quite a bit different from the love one has for a parent. It isn’t that it’s any less. It’s just different.

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The Interplay of Kate’s Rational and Intuitive Abilities

There are many things that Kate has forgotten. Most of those involve her rational thought processes.  I’ve often mentioned that the names of people and places probably top the list. This doesn’t mean that they are permanently forgotten. That depends on how well she has known the people or places before and how often she is still in contact with them. Names of people she hasn’t see in a while are gone though she often recognizes the names when I bring them up. She doesn’t always remember our children’s names or that we even have children. As I have said before, she sometimes forgets my name and her own. The same goes for all of the restaurants we visit on a weekly basis. We have eaten at Casa Bella for at least 45 years, but she usually fails to remember the restaurant’s name. She no longer remembers that we live in Knoxville. The same is true for her hometown of Fort Worth.

As I said in a post a few months ago, forgetting a person’s name doesn’t mean that one has forgotten the person. People with dementia continue to hold many of the feelings they have for people. Our emotions, which arise from our senses, continue to guide us in situations where we can’t remember the associated names. This involves intuitive abilities. I recall my mother’s telling me she didn’t have a family. I asked about her son. She told me she didn’t have a son, she responded to me in just the same way she always had. I can hear her now when she said, “You’re such a nice boy. You always were.” You may be thinking, “This doesn’t make sense.” I would say there is much that doesn’t make sense from a rational standpoint.

Despite the weakness in her rational thinking, Kate still thinks at least some of it matters. For example, several months ago when I mentioned the film Darkest Hour., she wanted me to tell her about it. When I said it was a WWII movie in which Churchill played a major role, she wanted to see it. She loved the movie, but I know she couldn’t have understood much of it. I am equally sure that she was able to experience feelings about it. She knew it was about the war. She still has strong feelings about historical events and people even though she would never remember the names or events without any prompting.

Last night while I was watching the PBS Newshour, she worked jigsaw puzzles on her iPad. Late in the show they had a segment on sex trafficking. As they talked with parents about their daughters who were victims of this crime, she audibly reacted with disgust. She wasn’t even watching the TV. She was sitting across the room eyes focused on her puzzle. Her ears picked up the audio, and she understood enough to react to it.

Another way in which she seeks to stay in touch with rational thought occurs on a daily basis. She asks me to tell her the names of people and places. She feels it is important to remember. She rehearses them, but they are quickly gone. When I have the news on in the car, she frequently asks me to explain what they are talking about. This is a big challenge because most of my explanations are delivered in more than a sentence. Before I get to the point at the end, she forgets what it was that came before. Thus she doesn’t understand what I am saying. Then that I do what I should have done to begin with. I try to express in a single, simple sentence what the issue is. That takes care of it. My point is that she still has an interest in things that are happening in the world and around her. She tries her best to understand and remember. I feel that that she can’t ever achieve her objective. Fortunately, she doesn’t appear to experience much frustration over it.

She is trying very hard to be more organized. Most of this involves getting out the clothes she is going to wear. Often this occurs before she gets ready for bed as she did last night. She walked into the bedroom with pants, two tops, and a pair of shoes. I noticed that she didn’t have a night gown and asked if she would like me to get one. She did. When I brought it to her, she put it in her arms along with the pants, tops, and shoes. Then she asked in a whisper, “Are we staying here tonight?” She has asked this question quite a few times before. It illustrates a breakdown in her rational thought. At the same time, she is working to be more in control of her life which requires her rational abilities. It is common for her to take the clothes to the bathroom where she takes her shower and forget she has done so. Then she goes to her closet and gets something else.

A related example is her desire to create photobooks of our family like the ones her brother Ken has done. She hasn’t done any actual work on a book in more than two years. On the other hand, it is not uncommon for her to tell people she is working on them. Frequently when I mention something that we have experienced during our marriage, she will say, “Remember that. It goes in the album.” It is something she remembers and has a strong desire to do. It also requires a lot of rational thought to accomplish that task. She will never make her album, but I think she gets some satisfaction by thinking of it as an ongoing project of hers.

As I hope you can tell, there is still much about Kate that is like it was in the past. She wants to live as she did before, an impossible challenge.

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Remembering Mom

Today is my mother’s birthday. She died in 2002, four years after her doctor told us she had dementia. I remember how carefully she presented the news. There was no problem for my dad and me. We had recognized it for some time. I wish I could remember how long we had known. Looking back, I suspect Dad was aware of it when they moved to Knoxville in 1994. He had been having his own health problems. I suspect he may have been concerned about what might happen to her if he were incapacitated. I’ve had similar thoughts about myself although I’ve been fortunate not to have had signs of health problems.

Two things I do remember. One is that Mom used to comment on her poor memory. She frequently said, “I don’t know what’s wrong with me. I can’t remember anything.” In the early stages, I just thought it was a natural part of her aging. That’s what I thought about Kate as well. Of course, that really is the most likely diagnosis. It takes a while to recognize that it is much more than aging.

The second thing I recall is that Dad kept her busy. I thought he was just getting acquainted with a new city. It was that, but now I think it was more. They were active in a local senior center and worked as volunteers helping with the center’s mailings. I remember Mom’s opening an envelope from the center and showing it to me. She was so excited to receive it. She hadn’t remembered that she had helped with the mailing a day or two earlier. They also delivered Meals on Wheels. Dad may have been doing what I do with Kate, trying to keep her brain stimulated as much as possible.

My mom and dad were also fortunate that she had no special complications along the way. She just gradually lost all her memory. Many with dementia die of other causes. I would say she died from the effects of dementia itself. She finally reached the point at which she could no longer eat or drink.

Dad was a devoted husband and care partner. He cared for her with minimal help. The only regular help he had was from an adult day center where he left Mom on Wednesday mornings while he went to Kiwanis and then to the grocery. My brother, Larry, and I tried many times to bring in help or to move them to assisted living. He was very resistant to say the least. In the end, he did it his way. Mom slept in the same bed with him until a few days before she died. I recall Dad’s telling me that he tied a string from her wrist to his so that he could tell if she got up at night. That has much more significance to me now.

Two or three days before Mom died, Dad was turning her every two hours. His last time was about 2:00 a.m. He woke up at 5:00, and she was gone. She died peacefully without any pain and without the help of pain medication.

Mom always loved her boys. She thought Larry and I could do no wrong. Even  after she forgot who I was, she often said, “You’re a nice boy. You always were.” That’s something else for which I am grateful.

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A Mother’s Love

I got in bed last night about thirty minutes after Kate. That’s rather typical. Sometimes it’s a little longer. She was still awake and said that she had been waiting for me, wondering what I was doing. I had been reading in my chair right beside the bed. Until the past few months, I had been going in the family room and reading so as not to disturb her. When I discovered that left her feeling alone, I started reading in the bedroom. Since I read from my iPad, I have no trouble reading in the semi-dark room. Even though I am nearby, I find that she feels better when I finally get in bed with her.

After snuggling up close to her, she said in a very childlike way, “Tell me about our children.” I did. We talked a few minutes more and she again said, “Tell me about our children.” It was like a child who wants her mother to tell her favorite story once again. Over the past 4-6 months, I’ve grown accustomed to her asking me to tell her our children’s names or sometimes asking “Do we have children?” This was the first time, however, that she has asked in this way, and it opened my eyes to a reinterpretation of her asking.

She asks me other people’s names continuously throughout the day. That almost always occurs when I have said something like “Today we are going to see the Robinsons.” Her typical response would be “What are their names?” When she asks our children’s names, it isn’t usually prompted by anything I’ve said. For example, we may be driving in the car, not even talking, when she says, “What are our children’s names?”

At first, I interpreted her questions as a simple request for information. I also wondered why she seemed to ask about our children’s names as much or more than other people’s names. She should have been able to remember them much longer than those of others.

Last night when she said, “Tell me about our children,” I don’t think it was because she is simply forgetting their names like those of everybody else. It’s precisely the opposite. Her many unprompted requests for their names is because they do matter so much to her. She loves them dearly. They are precious to her, but their names are slowly slipping away. It’s her “mother’s love” for her children that is prompting her questions.

In addition to forgetting their names, I am sure she is forgetting most of the things about them. She hasn’t forgotten her feelings for them, however. She is doing her best to hold on to the last memories she has of them. I intend to do my best to help her.

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Good Times with Bitter Sweet Moments

Once again, I am happy to report that the balance of our day yesterday was as good as the start. After returning from lunch, Kate rested for a little over an hour. Then we went to a movie. This was a bit unusual in that it was a movie we had seen just last week, RBG. Kate hadn’t remembered it, but she had enjoyed it. Since we didn’t have any special Memorial Day plans, I decided to take her again. We liked it just as much the second time, and I appreciated the artistry with which the story was told even more than before.

As we were getting out of the car before the movie, she again asked my name, and I told her. She is so very natural when she asks me. She shows no sign of being bothered by having to ask nor does she seem to be concerned about hurting me. Other than the question itself, she doesn’t sound like we imagine a person with Alzheimer’s would sound just childlike.

While we were at lunch, I received two DVDs from Amazon. One was Fiddler on the Roof. The other was Les Miserables.  Last night we watched a portion of Fiddler. Although she was working puzzles on her iPad throughout the movie, she was following it and enjoying the music. I did as well. This is rather unusual since she hasn’t expressed much interest in TV programs or movies in a long time. It was a nice way to end the day.

Kate was already in bed as I pulled back the covers on my side to get in bed when she said, “Do I have a name?” I told her she did and went over to her side of the bed, sat down and told her. I said that she had a special name because it was a family name. That prompted her to say how much she loved all her aunts and uncles. She was in one of her talkative moods again. She started to talk about our relationship. She has a set of things she recites. She is glad we met and how fortunate that we have been. Last night she also talked about how comfortable she is when she is with me and how easy it is for her to say things to me.

I continue to interpret her behavior in light of what I have read in The Dementia Handbook. The loss of her memory is dramatically expressed in her failure to recall names and facts, but her senses are alive. Every few minutes as we watched Fiddler, she would say something about what a good movie it is and how much she liked the music. More importantly to me, she still has special feelings about our relationship and me. And, as she has said, “I can’t even remember your name.”

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Another First, Feeling Pressure Over Names

We arrived in Lubbock a short time ago and have checked into our hotel. For the first time, Kate is feeling a good bit of pressure concerning the names of our son and his family. As I have mentioned quite a few times, she often has difficulty remembering their names along with those of daughter and her family as well as virtually all of our friends. She has often practiced them with me. She does this even at times when we are not apt to be seeing those whose names she is trying to remember. Since leaving Knoxville yesterday, she has asked me to tell her the names of our son, Kevin, and his family a number of times. The difference this time is that she is really concerned. I asked if she might find it helpful if I showed her some pictures I have on my iPad. She said that might help. I brought up some pictures taken at Christmas. I quickly discovered that this was too overwhelming and stopped. She said, “You’re just going to have to help me with this.” I assured her that I would help her and that she would be all right. I told her that she would remember them as soon as she saw them. She was skeptical. Then she asked me to tell her my last name.

Our son is flying in from Chicago where he attended a professional meeting. His plane is scheduled to arrived in 45 minutes. In the meantime, I have spoken with our grandson, Brian, who returned home from his freshman year at TCU. We are all going to meet at Panera and then choose a place for dinner. The rest of the family will be attending a banquet for the band. This may be a good thing. Instead of trying to remember all five of them together at one time, she will just have two.

It would not be surprising for you to know that she also can’t remember where we are (Nashville this morning and now Lubbock). After all, that is nearly impossible when we are in Knoxville. It really is impossible when we are out of town.