Sad Moments

Yesterday I mentioned the sadness that accompanies special holidays, events, or occasions that one believes might be the last ones. They are not the only sad moments. There are plenty of others. I had one of those yesterday afternoon. It was almost 3:00 when Kate and I came back to the house after lunch. For a short time she looked at one of her photo books that she and her brother Ken had made for her mother’s family. I was glad to see her pick it up and sat down with her. It’s been a week or two since she had looked at any of her photo books. With her memory fading quickly, I was interested in seeing how well this one brought back memories. I was pleased that she was often able to recognize her various family members, especially her mother, father, and grandmother. It wasn’t long before she said she was tired and wanted to lie down. An hour later, I asked if she would like to get out of the house for a while. She did and got up to go to the bathroom.

I went to the laundry room to transfer clothes from the washer to the dryer. In a few minutes, I heard her say, “Hey.” This is becoming her common way of calling for me now that my name is slipping away. Until the last few weeks, she has been calling my name. I walked into the family room. She was standing there pointing to her wet pants. She didn’t say a word. She was like a little child who might have had the same experience. She just wanted me to help her. I felt so sad. Although she has had accidents around the toilet, this was her first experience when she was fully dressed. I said, “It looks like you had a little accident, but we can take care of that. Come with me.” She followed me to the bathroom where she took off her clothes, again with my help as one might do with a child. Then I got her some clean clothes. She thanked me. I told I wanted her to count on me anytime she needs help. This is the kind of experience I find the hardest to deal with. I don’t like seeing this disease bring her to her knees like this.

I had one other sad moment last night as she was getting ready for bed. She asked, “Who are you?” I told her I was her husband and that I loved her. I added, “And you love me too.” She could not believe either of these things. I went to the family room and got a photo book with our wedding pictures. I showed her several of her with her father and with me. She was convinced. Then she said, “What is your name?” Her memory of me is fading more quickly now and will soon be gone.

I hasten to add that she is remains very comfortable with me. She still mentions the good times we have had. It is clear that her memory comes and goes throughout the day. It’s not just a period of confusion in the morning. It’s almost like someone turns a switch on and off at random times. I am grateful for those moments when she does know who I am, but know what lies ahead.

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.

More Confusion in the Past Two Days

Changes in the Past Two Days

Two things happened night before last that are indicative of the kind of changes Kate is making. After returning home from dinner, she sat down with her iPad. It wasn’t long before she asked for help. It turned out that she thought the puzzles were photos and was trying to figure out how she could label them. At first, I didn’t understand that and tried to show her how to put the pieces together. She responded by asking me to put the pieces in place. I worked two puzzles and asked if she didn’t want to work them herself. She said something that made me realize that she didn’t understand they were puzzles. Then she said she was tired and thought she would put the iPad aside and work on it “tomorrow.” I told her I would put on some music she might enjoy. She said she would to get ready for bed.

After she was in bed a few minutes, I noticed that she was shaking. I asked if she were all right. She said, “I think I made a big mistake and hope I didn’t mess things up.” I asked her to tell me about it. She didn’t know what she had done. She just thought she had done something she shouldn’t have. I told her I was going to take my shower. She said, “When you finish, will you come to bed.” I told her I would even though that would be a little early for me. After my shower, she was still worried about having done something wrong. All I could do was hold her and try to assure her that everything would be all right. I didn’t convince her, but she gradually calmed down and went to sleep.

Over the course of her illness, she has had periodic episodes that involved her thinking I had told her something that I hadn’t or that someone was coming to visit that wasn’t. I can’t help wondering if she is going to experience more of this kind of thing in the days ahead. I hope not. In the past, what she has imagined has bothered her. I hope we can avoid that.

During dinner last night and afterward, Kate was especially confused. She always asks the name of the restaurant as well as the hostess and our server. She just asked more times than usual and also appeared to be struggling more to get it right. She works so hard to remember names and places.

We had the following conversation on the way home.

KATE:            “What are we?”

RICHARD:    “Do you mean the nature of our relationship?”

KATE:            “Yes.”

RICHARD:    “We are married. Are you disappointed?”

KATE:            “No, I’m glad. What is your name?”

RICHARD:    “Richard Lee Creighton.”

KATE:            “What is my name?”

We are working our way into a regular routine when we return home. She said, “I’ll follow you.” She was impressed with the family room. As in the past, it was as though she had never been here before. Then something new occurred. She saw her iPad on a chair and asked, “What is this?” I said, “That’s your iPad” She gave me a look that I interpreted as, “What’s an iPad?” I explained it was something that she could use to work jigsaw puzzles. I wish you could have seen the excitement on her face. She said, “Oh, I’d like to do that right now.” I was shocked that she didn’t know what her iPad is, but it obviously caught her attention. As with people whose names she can’t remember, she didn’t recognize what it was, but she knew it was something familiar.

She mentioned wanting to brush her teeth. I told her to follow me to our bathroom. When she walked in our bedroom, she said, “Oh, this is nice.” Once again, she seemed not to recognize having ever been here before. After she went to bed, she said, “It’s been nice to stay here.” Apparently, she thought we were out of town.

When I got into bed, I moved close to her and put my arm around her. She accepted that as naturally as ever. Then she said something that made me think she didn’t recognize that I am her husband. I said, “You remember that I am your husband, don’t you?” She couldn’t believe it. Then she said, “Could we talk about this tomorrow?”  It seems like she is making noticeable changes on almost a daily basis. I don’t like the direction in which we are going.

Halloween on Our Street

Kate and I moved into our present house 21 years ago this past July. Not long after that, I chatted with some neighbors while I was out walking. They asked if anyone had told me about Halloween. I told them I hadn’t, so they proceeded to inform me. I don’t recall any specific numbers, but I was surprised to learn that we get a lot of trick-or-treaters. We got very few at our previous houses, and the last one was only a quarter of a mile from the new house.

Since that time, we have discovered just how big a deal Halloween can be. During our first year or two we had around 200, but each year it has grown. Last night, we set a new record with almost 850 children who stopped by the house before we ran out of candy at 8:15. You might think that’s a lot, but it’s far from a record on our street. Our neighbor across from us said they had around 1200. They had more candy and continued until after 9:00.

We may not have the highest total number of trick-or-treaters, but we’re the only ones serving water. Yes, that’s right. I said “water.” This is something about which Kate has taken great satisfaction over the years. As we were making plans the first year, she said, “I’ll make sure to have plenty of water.” I said, “Water? I can’t believe kids would like that. They’re after anything with sugar in it.” She insisted. We had water, and to my surprise, it was well-received. As the number of visitors increased, I decided to buy a 5-gallon cooler for the water. Even with that, we have to refill it once or twice. After running out of candy last year, we had up to 20 people at a time waiting in line for water. That would have happened last night if we hadn’t run out of cups, 350 of them. We refilled the cooler twice. We dispensed about 11-12 gallons of water, so I am acknowledging to all that Kate was right. There really is a market for water – even on Halloween night. You don’t suppose that it was Kate who provided that knowledge to all those companies that bottle and sell it everywhere we go?

As you might expect, all this requires a little planning and coordination. Our first year in the house, I realized we were going to run out of candy very early and quickly went back to Target for more. We still didn’t have enough. We also learned that it made no sense to stay in the house and wait for the doorbell to ring. We found it much easier and efficient to sit outside. Kate tends to the water and I give out the candy. Of course, there are times when I have to go back inside to replenish our supply. Sometimes Kate would be alone for a few minutes when a large number would arrive at the same time.

Although it’s been almost eight years since Kate’s diagnosis, last year was the first time I felt that she had any trouble with her role as the “Water Lady.” I suspected then that this year would be different, and it was. For several months, I had planned to get someone to help me and just let Kate enjoy the children. About six weeks ago, I discovered that a couple that has been helping us with some landscaping goes all out for Halloween. The husband told me he and his wife had heard about the large turnout we have on our street and wondered if his wife and daughter could come to the house to see first hand what it is like. I told him that would be great and that I could put them to work. That worked perfectly. The daughter took charge of giving out the candy, and  her mother assisted with the water. Kate started out the evening by filling the cups with water. She was very slow. Ultimately, I started filling the cups. I was also in charge of replenishing both water and candy as needed.

Kate got cold and wanted to go inside. That left my two helpers and me to take care of things which wasn’t a problem. It’s just that I was hoping Kate would derive more pleasure from being with us. I felt this was her last time to be a part of things. I doubt seriously that she is likely to participate at all next year. Perhaps, the saddest part for me is that she never seemed to recognize that she was behind our having water in the first place. She used to have fun reminding me that it was her idea, and that I was wrong about its popularity. Last night she expressed very little enthusiasm for the entire affair. She did enjoy seeing the children for a while but tired of that much earlier than I would have expected.

So it was a successful night for trick-or-treating but also sad to think that this long-standing tradition will not be the same again.

Anxiety Attack in the Middle of the Night

About 1:00 this morning, I heard Kate whimpering. She put her arm around me and said, “I need you.” I didn’t ask what was wrong. Although milder than what I have observed before, I recognize the symptoms now. She said, “Who are my parents?” That led to a conversation that continued for about an hour. I told her about her parents, their names, where they were from, how a Michigan girl and a Texas boy met and married. She also asked about our children. I told her a similar story about them and their children. When I finished, sometimes before I finished, she asked again. She didn’t ask, but I also told her who she and I are and about our meeting and our courtship and marriage. The more I told her, the calmer she got. At one point when I reminded her that our courtship had revolved around my work at a funeral home, she laughed. It was also clear that some of what I said jogged her memory. Finally, we both went back to sleep.

I thought that both of us might sleep a little later this morning, but it didn’t happen. I was up at 5:50. That wasn’t much of a surprise. The surprise was that Kate got up early enough to be ready for Panera about 8:00. She is doing fine. I am sure she doesn’t remember her anxiety during the night. That’s the only good thing about her memory loss.

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.

A Very Sad Moment

I just went into our bedroom to wake up Kate. She opened her eyes right away. The soft music I turned on about fifteen minutes before must have worked. I sat down on the side of the bed and told her good morning. She looked up at me and didn’t say anything. I said, “I love you.” When I did, tears welled up in her eyes. She had a very sad look on her face. As I have noted before, she is not one to cry. She held back her tears but didn’t say anything. Then she said, “What’s your name?” I rubbed her back for a few minutes and then told her I would always be here to take care of her. She said, “That’s good.” I told her I would like to take her to lunch. After a few minutes, I helped her up and showed her the clothes I had picked out for her. Then she went to the shower.

I can’t be sure what brought on the tears or the anxiety last night. Her tears followed my saying that I love her. I wonder if my expression of love and her not knowing my name hit her in some way. It hasn’t done that before. I don’t believe she remembers that she has Alzheimer’s. I know, however, that she recognizes the changes that are taking place. She has expressed that concern before. I believe that is causing her anguish. She knows she is losing touch with the world around her and wants it to stop.

It is ironic that when I was at Rotary on Monday, one of the members asked me how Kate was doing. I told her. Then she said, “At least she is not aware.” I quickly said, “Oh, no. She does know, not that it is Alzheimer’s, but she knows she is losing her memory.” I must admit that I thought by this time she would just drift away without realizing she has a problem. That’s another of my expectations that was wrong.

As I have mentioned many times, the most difficult part of this journey is the sadness I  experience at moments like this. It is very painful knowing that she is troubled. I don’t look forward to the next part of this journey when she won’t have the same recogition, but I hate to see her suffer now.

The sitter is coming this afternoon. I have a meeting at 1:15, a dental appointment at 2:00, and another meeting at 3:15. It’s going to be harder than usual for me to leave her. I think I will set up the DVD of Les Miserables so that Mary can play it for her while I am gone.

One of Those Sad Moments

At lunch today, I said something to Kate about her mother. Then she said something that suggested that her mother was still alive. I said, “Your mother passed away.” She looked shocked, and I said, “Yes, she died in 2005, and you can feel good about the way you took care of her the last years of her life.” Then I said, “You were a very faithful daughter.” She said, “I’m her daughter?” She looked very sad, and her eyes filled with tears. I gave her the whole story of how she had made arrangements for her mother to move to Knoxville to live with us. I talked about a conversation we had one night that led to her contacting a friend about an agency that had provided in-home care for her husband who had recently died. I also told her that the caregiver who was in the house to greet her when her mother arrived was holding one hand when her mother died and that Kate and I were holding her mother’s other hand. She seemed to be comforted by this.

This was the first time she has ever given any sign of not remembering her mother’s death, so it caught me off guard. It raises the question I have read others talking about. Should I have told her the truth? In this case, I didn’t have time to consider the best way to respond. I believe I did the right thing. I suspect that she will forget again sometime, but I expect that she will remember most of the time, at least for a while. If she were further along, I would probably let the subject slide by without saying anything at all.

Regardless of what was or wasn’t right about the way I handled the situation, it was sad to see the memory of her mother’s death slipping away as well as the sadness she experienced when I told her.

Our Most Painful Moment

After coming home from dinner last night, Kate and I spent almost an hour in our family room relaxing. As usual, she worked on her iPad. I took the time to play a variety of music to see how she would react to a broader variety of music than I usually play for her. I (we) were having great success. That was followed by a very nice phone conversation with our son, Kevin. I think we may have talked almost an hour. When the call ended, Kate said, “Aren’t you proud of him?” I said, “Very proud.”

Shortly after Kevin’s call, we decided to get ready for bed. As I got up from my chair, Kate asked, “Where do we keep our clothes?” I said, “Let me show you.” This was the first time she has ever asked that, but it was consistent with other signs of confusion that I’ve observed recently. I took her back to the room where she keeps her clothes and helped her get a night gown. Then I went to take my shower, and she came back to the bedroom where she got into bed with her iPad.

Just before I got to get into bed, she looked up at me and asked, “What is your name?” She started to repeat it and then asked again. After I repeated my name, she said it. Then she asked, “What is my name?” I told her, and she said, “I don’t know why I am so confused.” This was the third time in the past few weeks that she has said this. The first time I told her she had Alzheimer’s. She told me she had forgotten she had it. The next time was during her first anxiety attack when she couldn’t remember who she is or where she was. That time I skirted the issue of Alzheimer’s and focused on calming her. At the time, I didn’t think there was anything to be gained by bringing up her diagnosis. I felt the immediate need was comfort.

Last night, I chose not to say anything about Alzheimer’s and seek to comfort her. This time, however, I was really torn between telling her about her diagnosis and not telling her. I said, “It is very common for us to have memory problems as we age. I think that is what you are experiencing. Whatever, I want you to know that I love you and will help you every step of the way.” She said, “That makes me feel better. I know I’ll get better.” I tried to avoid telling her she would get better and saying that whatever happened I would be with her. She said, “They say you shouldn’t rush it. If we just take it a little at a time.” We talked another 15-30 minutes. I lost track of the time. She repeatedly said she felt better knowing that I would help her. “I know it won’t happen right away. The doctor says we shouldn’t rush.”

Of all the things that might bother me in connection with caring for Kate, there is no question that seeing her suffer is far and away the most painful thing I can experience. I found this excruciating. Here she is 7 years and 8 months since her diagnosis and 12 years since we saw the first signs of her Alzheimer’s. She doesn’t know it is Alzheimer’s, but she truly knows that something is wrong with her, and it’s painful for her. I hate seeing this. Even recently, I had thought we might escape this part of the journey.

This experience and the earlier ones have caused me to reflect on the best way for me to handle them in the future. One thing is clear. I have been successful in addressing her immediate concern. In each case, I have been able to console her and make her feel better. I am still torn between being more honest with her about her Alzheimer’s and not. She is not the kind of person who wants to be deceived. She is the one who wanted to get the diagnosis in the first place. She even said that she was relieved with the doctor gave her the news because it helped her understand what was happening to her. Over the course of her illness, we have periodically talked about death. Both of us accept death as a part of life and don’t fear it or try to avoid conversations about it. In other words, she is not one to avoid the realities of life.

On the other hand, I believe in the importance of hope. I hear her, say things like, “I feel better now. I know you will help me. I’ll get my memory back. It just takes time.” Then I feel she has a hopeful approach that is healthy. I don’t want to risk destroying that sense of hope by telling her she has Alzheimer’s.

I’ve wrestled with this dilemma a good bit this morning. At this moment, I am leaning toward telling her but in a gentle way. In fact, I am thinking about utilizing what I have learned from Cornish’s book, The Dementia Handbook. Her main point is that we should accept the fact that the rational abilities of people with dementia no longer work the way they used to do. Instead, we should emphasize all of the things that they are able to do. Those are all things from which we derive direct pleasure through the experience of our senses. We have done just that throughout our journey, and I hope that we will continue for a good while longer.

Thus, I am thinking of telling Kate that her memory problem is a result of Alzheimer’s but that the good news is that we can continue to enjoy life the same way that we have done in the past – spending time with friends, attending musical events, theater and movies. In addition, I will be her helper when it comes to things that she needs to remember.

The counter argument is that we have been successful by emphasizing Kate’s intuitive abilities. It seems like trying to give a rational explanation runs counter to what she may need most, the knowledge that I will comfort her whatever happens.

I don’t intend to say anything until (unless) she has another episode like last night. Right now, she is up and seems not to have any memory of last night. I would have been very surprised if she had. Waiting to say anything will give me additional time to reflect on my decision. I don’t believe there is any way to determine in advance which is the right way to go. To tell or not to tell. That is the question.

A Re-run of Last Night and More

On the way to lunch, Kate asked me my name. Nothing unusual about that. Then she asked her name. I said, “Kate Creighton.” She said, “Creighton? Where did that come from?” I told her she got that name when we married. She was surprised and said, “We’re married?” I told her we were and told her her full name in which I included her maiden name. She didn’t recognize it. I started telling her that was her family’s name as we arrived at the restaurant. When we got inside, I started explaining. Then she mentioned the name of one of her aunt’s. There was clearly a spark of recognition. At least one other time while we were eating, she asked my name again.

I mentioned something about our being married, and she said, “Do we have children?” I gave her their names and told her about them and their families including our grandchildren. It was like the first time she had ever heard about any of them.

When we got home, she asked, “Are you a cousin?” I said, “No.” She said, “A friend.” I said, “Yes, I like to think I am your best friend.” She said, “My husband?”