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?”

Another Marker

Last night before turning on another segment of Fiddler on the Roof, Kate went to our bathroom to brush her teeth. As she passed me in my chair, she said, “Are you my cousin? . . .My brother? I said, “Closer than that.” She couldn’t guess. I said, “I’m your husband.” She said humorously, “My husband? Oh, I am in trouble.”

Over the past few days, she has appeared to be forgetting that I am her husband. It is obvious now. She is clearly forgetting we are married. At the rate things are going, that will soon be forgotten; however, I don’t expect this to change her feeling for me.

One reason I feel this way is that she still retains a strong attachment to me. I am a major source of her security at the moment. I have observed this in her growing dependence on me. More specifically, she verbally expresses this dependence. For example, when I returned home to relieve the sitter yesterday afternoon, she told me she was glad to see me. Two separate times she added, “I feel good when I am with you. I feel safe.” I don’t fully understand what makes her say she feels safe, but she doesn’t know where she is or who are the people around her but me. She knows that I provide the answers to her questions and control where and when we go places. I have become her lifeline. I don’t think I need it, but that provides an additional reason for me to do the very best I can to care for her.

A Surprise in Our Name Game

Since we started living with Alzheimer’s, we (I) have experienced many ups and downs. Kate and I fortunate to have had far more of the former than the latter. I hope that comes through in my posts. Sometimes the downs surprise me because they are so unexpected. That was the case at lunch today.

Shortly after we were seated, Kate asked, “What is your name?” She had asked that several times while we were at Panera before leaving for lunch. Then she asked, “What is my name?” I told her, and she asked, “Where are we?” I told her we were in Knoxville. I said that because that is usually what she wants to know. She frowned. I had obviously misread her. Then I said, “We’re at Tupelo Grill .” She frowned again. I decided she must mean “Where is our house.” At first, I just told her the general area in which our house is located. That was closer to what she wanted. Then I gave her the address. That worked.

Except for the part about our address, this part of our game was pretty normal. Then it took a sharp turn. She said, “What do I do?” I said, “Well, you were a school librarian.” Her eyes lit up. She didn’t seem to have remembered that. Then I said, “What you enjoyed the most and did the longest was to serve as our church librarian. You served as a volunteer for 19 years, and you were very good at it.”

This failure to remember having been a librarian took me by surprise, and I felt one of those moments of sadness that come along more often now than I would like. It was one thing when she started having trouble with our children’s names. Then it was my name. She is now having trouble remembering her own name. Not remembering that she was a librarian is not just forgetting a label. This is forgetting a major part of her self-identity.

It is not surprising that this would happen at some point, but I hadn’t anticipated its coming this soon. Like the other things that she is forgetting, I know this was just a single moment. This might not happen again for a while. On the other hand, that is exactly how everything else has started, little slips that occur once in a while. Once this process begins, it doesn’t let up.

Increasing Dependence and Confusion

After returning from lunch yesterday, Kate and I took a moment for a break at home before the arrival of the sitter. A few minutes before Mary arrived, Kate walked into the kitchen with her iPad tucked under her arm and carrying her cup. She was obviously ready to leave for Panera or Barnes & Noble. I told her that I was going to the Y and run some errands. She quickly, but meekly like a child, said, “Can I come with you?” I told her that Mary would be staying with her. She accepted that without a problem. It wasn’t long before the doorbell rang. Kate said, “Who is that?” I told her it was probably Mary who was coming in at that very moment. We both greeted her, and Kate seemed fine. Then I said I was going to the Y. Once again, Kate asked if she could go with me. I told her that Mary would be with her. She said, “What if I want something to eat?” I reminded her that Mary has a card she can use at Panera to buy whatever she wants. Again, she seemed to accept that without any questions. Then I left.

When I returned, she and Mary were in the family room with the TV on. Kate was working jigsaw puzzles on her iPad. Mary left. I walked over to Kate’s chair and kneeled so that I could look directly in her eyes. I told her I was glad to see her and that I loved her. She said, “I love you too even if I don’t know who you are.” I said, “I think you really know who I am, but you have trouble remembering my name. Isn’t that right?” She looked very puzzled but didn’t speak. I said, “You do remember that I am your husband, don’t you?” She didn’t answer. Then I said, “Knowing my name is not very important. You do know that you have known me a long time. We’ve been married 55 years, but it’s not important that you remember that. The important thing is that we love each other and that we can enjoy our lives together.” She nodded. The way she had responded or failed to respond to my questions makes me think that the connection with my name is almost gone and that her awareness of the nature of our relationship (that is, that I am her husband) is disappearing as well. I really do take comfort in the fact that we will still be able to enjoy our lives together, but there is no denying that we are in the process of a significant change. I didn’t need anything to convince me of that, but there was still more to come.

We went out for our Friday night pizza. When we got home, she wanted to brush her teeth. She stopped as she entered our family room and said, “I’ll follow you.” This is the second time recently that she has done this. She just didn’t remember how to get there. We went back to the family room after brushing our teeth. I turned on the evening news. She worked on her iPad.

About thirty minutes passed, when she asked for my help with her puzzle. She has been doing this more frequently in the past few weeks, especially the past week. She had completed all but 4 pieces of a 16-piece puzzle. Before I could do anything to help, she said, “Just complete it for me.” I did, and helped her get another puzzle. She was having a problem figuring out how to do it. This is a new problem.

I was seated across from her writing this post when I noticed that she was sitting in her chair with a confused look. I decided it would be good for her to take a break and enjoy something more passively. I suggested we go to our bedroom and watch a little of Les Miserables. She liked the idea.

She was quickly engaged and enjoying herself. It was just as though this were the first time she had seen it, not the fifth time in five weeks. We took a break at the intermission. She asked, “Where are we?” I said, “Knoxville, Tennessee.” In a moment, she asked, “If someone asked me where I live, what should I say?” I said, “I would say that I live in Knoxville, Tennessee. We’ve lived here a long time. I was an English teacher and then a school librarian before retiring and serving nineteen years as our church’s librarian.”

That led her to talk again about our good fortune to find each other and how much we enjoyed the same things. I told her I felt the same way. Then I took my shower, and she put on her night gown. When we were ready for the next half, she was tired and went to bed. It was before 9:00, so I stayed up a while. I offered to turn off the TV, but she said she was enjoying listening to the music. In a few minutes, I got in bed with her. She kept repeating how much she liked the fact that we both liked things like this and could share them together. This is something she has picked up from me. I was glad to see that it must have had an impact. Otherwise, she would never have remembered it. I am especially glad that we have had the good fortune to share a love for this particular musical. I don’t think I would have ever played it five times in five weeks were it not for her, but I have enjoyed it every bit as much as she.

I was glad we were able to end the day on a high note. I still feel sad about her increasing confusion and loss of of memory, but I treasure her moments of pleasure. They are mine as well.