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A Follow-up to “The Light is Dimming”

I maintain a very active email correspondence with two college friends from TCU, Tom Robinson and Bruce Morton. Tom responded to one of yesterday’s blog posts that dealt with Kate’s recent changes. I am copying his message along with my reply as I believe it sheds a little more light on our present situation.

Email from Tom Robinson

Richard, I just read your blog, and the “Light Is Dimming” is, for me, the saddest one yet. I’m thinking it is for you, too. As you say about yourself, I’ll say, too: I did not realize that Kate would, being this far along, be saddened by her inability to remember. This is the first time I recall your writing about this, so it must be that it is the first time. Of course, maybe she was crying about something else. I don’t know. But I took it as you seemed to – that she was realizing she has a disease and that the loss of memory is not going to stop. It does no good for me to say so, but my heart so truly goes out to you and Kate. I was glad to see the later post where things were somewhat better. What would we do without music!!!

Tom

My Reply

Thank you, Tom. You are reading the situation correctly. The convergence of so many new symptoms as well as the increasing frequency of the old ones tells me Kate is declining more rapidly now. We may still have plateaus, but she is clearly reaching a new low. As I have conveyed and you understood, I had thought because she seemed to have gotten along so well up to this point that she would just drift away without realizing that she has a problem. That has been particularly true since she has been asking me about my name and her own name. She has done so without displaying any sign of being disturbed by it. Regardless of whether she sees her symptoms as a sign of Alzheimer’s or not, I can now see that she is indeed aware of her loss of memory and it disturbs her. 

 As I remind myself, let me remind you that we are on borrowed time. Because it has been 12 years since we saw the first signs of her Alzheimer’s, we could have faced the current situation several years ago. That doesn’t end the pain; it only helps me to put it in perspective. I remain satisfied that we have taken full advantage of the time we have had. I even believe that the way we have approached her diagnosis may have helped us get along for a longer period of time than would have otherwise been the case.

 This is not the end of our good times, but I expect to see more signs of change. It’s not going to stop. That is the nature of this disease. About 30 minutes ago, we arrived home after dinner. She left the kitchen for the back of the house. She came back to the kitchen rather quickly and pointed to the door to the dining room. I asked what she wanted to do. She said, “I don’t know.” I asked, “Do you want to brush your teeth?” It turned out she was asking if that (through the door to the dining room) was where she should go to brush her teeth. I walked her to the bathroom. On a couple of other occasions, she has been disoriented upon arriving at home, but that has been after dark. This time it was still daylight. It is difficult to watch this deterioration of someone you love who had been a fully-functioning adult with two master’s degrees.

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The Light is Dimming

Yesterday seemed like a short day to me. It was Monday and the day for the sitter. Kate got up a little earlier but went back to bed after her shower. It was just after 11:30 when she was ready to go to Panera. Knowing that Anita was to arrive at noon, I called her and asked her to meet us at Panera. I left the two of them for Rotary shortly after Anita arrived.

It was 4:00 when I returned. I had a few groceries to put up. Then Kate and I went to Barnes and Noble. She seemed to be fine. During the time we were there, she asked my names several times. At no time did she seem disturbed by asking. Almost 24 hours earlier, my friend Tom Robinson had asked in an email how long Kate could remember things. I told him that it was often just seconds. Her attempt to remember my name illustrated that. Two times in succession, I told her my name, and she couldn’t remember it.

We went to Chalupas for dinner. When we got out of the car, she said in a very serious, thoughtful way, “I want to thank you.” I asked what she was thanking me for. She said, “For everything you do for me.” I said, “That’s because I love you.” She answered, “I know.” At dinner, she again asked my name several times. As we walked out of the restaurant, she said, “You’re a good guy.”

When we got home, I played the last portion of the DVD I had played the previous night, the one with her father’s home movies. She watched them with interest but without saying a word. That’s unusual. She usually expresses her pleasure audibly when she watches them. When we finished, I told her I was going to take my shower. As I was getting ready, I noticed that she hadn’t moved from her chair and wasn’t working on her iPad. She was just sitting there with a sad look on her face. I walked over to her and knelt beside her chair. There were tears in her eyes. I said, “Tell me what’s wrong.” She said, “Nothing.” My immediate interpretation was, and is now, that she was thinking about how little she could remember. She didn’t ask why she couldn’t remember as she has done before. That made me wonder if she had recalled my telling her about her Alzheimer’s the day before.

After she said, “Nothing,” tears welled up in my eyes. I said, “I understand, and I am here to help you. Whatever happens, I will always be with you.” We hugged and gave each other assurances of our love. The light is dimming. I knew this day would be come, but I never envisioned the pain she might feel this late in her journey.

After a few minutes, I decided she needed something uplifting and put in the DVD of Les Miserables. That worked. She was immediately engaged. After my shower, we watched a while before going to bed.

At 10:30 this morning I have my labs before a routine doctor’s appointment on Thursday. Knowing that I wouldn’t get to eat until after that, I decided not to get up as early as usual. At 6:00, I decided to get up. As I did, Kate made a sound. I leaned over and kissed her on the cheek. She said, “Thank you.” I could tell that she was crying very softly. I decided not to get up. I moved closer to her and put my arm around her and gently stroked her shoulder. Neither of us said anything. In the darkness, I could see tears drop from her eyes. When she went back to sleep thirty minutes later, I got up.

It is now 8:08. A few minutes ago, I thought I heard the flushing of a toilet and went to see if she is up. She is. Since I need to be at the doctor’s office at 10:30, I was going to wake her about 8:45 so that she could go with me. It looks like I won’t have to do that now. I wonder what today will be like.

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A Second Chance Comes Sooner Than Expected

As I noted earlier, Kate seemed to be fine this morning. It was late, but we got to Panera at 11:00. That gave us hour for her to have her muffin and for both of us to relax. On the way to lunch, something happened that all of us can relate to. We worry about things that never happen or surprise us when least expect them.

As we were driving, Kate asked, “Where are we exactly right now?” I’m accustomed to the question and told her we were on the road in the northern part of Knoxville. She said, “Is Knoxville a city?” I told her it is. Then she asked my name. I told her and told her how long we had been married. As always, she was surprised how long that had been. I mentioned our children. She wanted to know their names. After I told her, she asked again. She seemed more confused than she normally does.

We drove a little further, and, for some reason, I brought up the fact that we had visited Ellen last Sunday. She looked very surprised and said, “We did? I don’t remember that.” I said, “Yes, we did.” Then she looked perplexed and said, “I should have remembered that. What’s wrong with me?” Since we had had a similar conversation just last night, it caught me off guard. I made a quick decision to tell her what was wrong.

I said, “You may remember that some time ago, we learned that you have Alzheimer’s. That affects your memory and is why you have trouble remembering things. The good news is that most of the things we enjoy in life don’t depend on memory. We enjoy listening to music, going to Casa Bella for their music nights, as well as our local theaters, and spending time with family and friends. Not only that, but you have me to help you with anything you need to remember. I will always be with you for that.” She still looked a little puzzled, but she did say how good she felt knowing she could depend on me to help with her memory. By that time, we were arriving at the restaurant where we had a good lunch and a delicious dessert.

When we arrived at home, she asked, “What now?” I told her that we could spend a little time at home and that we had several options. I mentioned that we could look at some of our pictures from our 50th anniversary trip with our family to Jackson Hole. I also said I could put on some music, and we could relax in the family room. She saw her iPad and said she would like to work on it. For a while we enjoyed Tchaikovsky’s Symphony No. 6 as she worked on her iPad. Then she said she was tired and wanted to lie down on the sofa. I put on some softer music to play while she rests. I am finishing up this post. After that I am going to bring in the clothes from the dryer to fold and put them up.

At the moment, all is well. I am glad I decided to remind her of her Alzheimer’s. This  time it seemed like the right thing to do. Maybe that is because I had thought it through. She seemed to accept it well. At least, she didn’t indicate any concerns about the long-term implications. Perhaps that will never come up. If it does, I will continue to emphasize the good things that we will continue to enjoy and that I will cover the memory issues.

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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.

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More Ups and Downs

Yesterday was a day of confusion for Kate. Once again, we had two bright spots that balanced the down moments. One of those came after we returned from her monthly massage. We went into the family room where I picked up the “Big Sister” album her brother, Ken, had made for her and asked if she would like to look at it. I was thinking specifically about the trouble she had been having remembering her family and thought this might jog her memory. It worked beautifully. I sat down beside her, and we went through the entire 140 pages. It brought back great memories. When we finished, she started over at the beginning. She must have spent a full hour and a half looking at the pictures and commenting.

It wasn’t long before it was time to get ready for another musical night at Casa Bella. The musicians, especially the male singer, have been longtime favorites for many years. They are a little younger than Kate and I, but they know the music of our generation. I don’t think there was a single number we didn’t know. It was another great evening.

After we were in bed and ready to go to sleep, Kate said, “What’s your name?” I said, “I’m Richard Creighton, and I am your husband. We’ve been married 55 years.” She said, “Are you sure? I don’t know you.” I assured her I was right, but she still wasn’t sure. She decided to test me. She asked where we got married. I told her. She was surprised when I mentioned the church. It was the one in which she grew up. She still wasn’t absolutely convinced, however, and looked a little suspicious. I told her I loved her. She almost always says she loves me. She didn’t this time. I asked if she loved me. She said, “I don’t know.” I reached my hand to touch her, and she moved it away. She was tired and wanted to go to sleep. She said, “We’ll talk about it tomorrow.” In a few minutes, I moved next to her and put my arm around her. She didn’t push me away. Neither one of us said another word.

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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?”

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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.

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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.

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In a Cheerful Light-Hearted Mood Yesterday

Kate got up on her own around 10:00 yesterday. We were too late for Panera but right on time for lunch. One of the first things she asked when we got in the car was, “What is your name – whoever you are?” I told her. She must have asked the same question another two or three times before we arrived at the restaurant. Although she had originally asked in a light-hearted way, she was clearly serious about not being able to remember it. I said, “I guess you remember that we are married.” She looked shocked, and said, “We are?” In a few minutes, she said, “I guess we have children.” I told her we did and then expected her to ask about them. Surprisingly, she didn’t.

We came back home after lunch, and Kate went right to our bedroom and napped for over an hour. When she got up, she was ready to go. We left for Barnes & Noble. We had been in the car only a minute or two when she asked my name and then where I was from. A few minutes after that, she said, “Do you know my name?” I told her. Before we arrived a Barnes & Noble, she asked my name again. She asked again at least two more times while we were seated. At one point, I was pretty sure that she was just playing games with me and that she really remembered my name. I am equally sure that most of the time she didn’t.

I received a phone call from a friend we see at Panera. She is in a Bible study group that meets on Tuesday mornings. We often chat briefly with her as well as the man who leads the group. She said that several people had asked about us. She specifically mentioned a man with whom I have had quite a few conversations over the past few years. I have his phone number and called him. I reassured him that we were all right but that Kate’s sleep pattern has been changing. I hope this won’t be the end of this friendship. It is not the same as longtime friends that you have gotten together with over the years, but it has been a meaningful relationship. I don’t want it to end.

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Always Adapting

Every caregiver of a loved one with dementia knows it is helpful to adapt to the changes that confront us. I get that, but I don’t adapt at the first signs of change. In fact, I often work hard not to give in to the changes that are required. Giving in has its benefits though. The big one is that you don’t have to fret over the fact that what you want isn’t going to happen.

That’s my introduction to the change I made yesterday. You may have read one or two posts in the past few weeks that conveyed my desire for Kate to get up early on the days we have a sitter, especially on Monday when the sitter arrives at noon. I started our custom of going to Panera each morning so that Kate could get a muffin. As we became acquainted with the staff and some of the regulars, I felt the social encounters we had were good for her. It has been a time that the two of us could share a pleasant social experience that was easy for Kate.

Earlier this summer when she started sleeping later in the morning, we had less time for Panera and sometimes missed it altogether and went straight to lunch. That didn’t present a problem for Kate. She has never expressed any disappointment about missing her muffin, Panera, or the social experiences we had there. That wasn’t true for me, however. I had grown accustomed to spending one or two hours a morning with her in a social setting. I wasn’t even eating. I just had my coffee. The difficult part was giving up the social experience. Originally, I took Kate to Panerea for her, but, ultimately, I found it was as much or more for me.

Yesterday I decided I would not rush her, but I did make an attempt to wake her in time for me to take her to lunch at Panera. She had no interest in getting up, so I decided to let her sleep. I would just ask the sitter to take her to lunch for me. Having made that decision, I relaxed and went about my business. That is the big benefit of letting go. I’m not going to fret over this. From now on, we’ll go to Panera if she is up in time. Otherwise, I’ll let the sitter take her. By the way, as it turned out, Kate did get up in time for me to take her to lunch. It was almost 11:30 by then, so I called the sitter and asked her to meet us at Panera.

That only takes care of three days a week when the sitter comes. There are still four other days. There have been at least two or three days lately when we didn’t get to lunch until close to 2:00. Since I am usually up between 5:30 and 6:00, I eat an early breakfast. I’m ready for lunch between 11:30 and noon. It would be no problem to wait until 1:00, but 2:00 is stretching it. The most obvious solution to this problem is to keep something in the house to either substitute for my lunch with Kate or tide me over until then. I think I’ll just take this one day at a time. In the meantime, I’ve been snacking on a little granola. That seems to work for a limited time.