Today as we left the restaurant where we had lunch, I saw a decal for the University of Miami. I commented that we don’t see many of those around here and that my dad had wanted me to go there mainly because it was close to home. She said, “If you had done that, you wouldn’t have met me.” Intending to be playful I said, “I might have met some glamorous Miami girl.” I waited a moment for her comeback. She paused just long enough that I thought she hadn’t heard me. Then she said, “She probably would have thrown you out in a couple of months.” I told her she was sharp and congratulated her on a perfect reply.
Not a Good Way to Start the Day
“It’s a New Day,” but I’m not “feeling good” this morning. About 7:15, the video cam alerted me that Kate was about to get up. I went to the bedroom to find her confused. I told her good morning and asked if I could help her. She said, “I don’t know. I don’t know what’s going on.” As in most of the other occurrences like this, she wasn’t having a panic or anxiety attack. She just looked puzzled about not knowing “what’s going on.” She was never able to say more than that. Based on past experience, I am sure it was waking up and not knowing where she is, why she is here, and who she is. She didn’t ask, but I gave her my name and hers and told her that she was in our house in Knoxville. I added that she was in her very own bed. She didn’t challenge any of that, but it didn’t seem to reduce her confusion.
She asked me what she should do. I told her that she usually liked to get up to go to the bathroom about this time. She asked where the bathroom was and asked if I would show her. I did and then took her back to bed. She was still puzzled. I told her I thought she just woke up and was groggy. I pointed out the window to our back yard. I reminded her of how often she looks out the window and comments on “all the green.” She seemed to recognize the yard. After getting in bed, she asked where I was going to be. I asked if she would like me to sit in my chair beside the bed. She said she would, and that is where I am right now. It sounds like she has gone back to sleep. There is a good chance that she will be fine when she wakes up again. I’ll just have to wait and see.
Moments like this always bring back memories of my mother. She used to say, “I don’t know what’s wrong with me.” That was when I first recognized how wrong people can be when they say things like “Well, at least she doesn’t know.” It was clear to me that my mother knew something was wrong with her. I can say the same thing about Kate. She understands and is disturbed by what is happening. I am grateful that this is not a constant pattern. Most of the time she simply asks where she is, who I am, and who she is without a hint of fear or anxiety. I think I handle the responsibilities of being her caregiver reasonably well. The part that is the biggest problem for me is seeing her when she is disturbed. I hope we are not in for much more of this.
A Special Moment to Start the Day
Being Kate’s care partner brings with it the full range of emotional experiences from joy to sadness. As I have said so many times, we have been fortunate to share far more of those at the joyful end of the scale than the other end. Sometimes joy and sadness are intertwined. We had one of those moments a few minutes ago.
I was in the kitchen (my office) when I heard her say, “Hey.” I looked up at the display on my iPad. I didn’t see any sign of her. Then I heard a louder “Hey!” She wasn’t in the bedroom at all. She had gotten up without my seeing her on the video cam. I walked to the back and said, “Where are you?” She said, “I’m here. Where are you?” I walked down the hallway and heard her say, “Here” just before I saw her coming out of the guest room. I said, “I wondered where you were.” She said, “I didn’t know where you were.” I said, “I love you.” She said, “I love you too.” I gave her a hug and said, “Doesn’t it feel good to be with someone you love.” She agreed, and I said, “I hope I am your favorite husband.” She laughed and said, “Who are you?” I told her, and she said, “Who am I?” I said, “Kate Creighton, and you’re my wife.” She said, “I am?”
We started to walk back to the bedroom when I saw pictures of her maternal grandparents. I pointed them out and told her these were special people to her. She asked who they were, and I told her. She was quite interested and wanted to know more about them. I told her they were her mother’s parents. She asked her grandparents names one at a time, and I told her again. Across from those pictures is a photo of the home in which her father grew up. I told her this was an important place for her and explained the significance.
I walked her a little farther and showed her a picture of her father. I said, “This is a very special man in your life. Can you guess you that might be?” She couldn’t. I told her, and she said, “He looks like a good man.” I told her he was. Then showed her a photo of paternal grandfather and her uncle taken with managers of her grandfather’s lumber business. She didn’t recognize them or the photo but was keenly interested.
The next photo was of her mother when she was in her late teens, I believe. It is my favorite picture of her. I told her that she was also someone special in her life. She didn’t know who it was before I told her. It is a photo she likes as well. She said, “She’s pretty.” The last photo was of her father’s mother. Kate had no recollection of her at all. When I explained that she was her grandmother and that she was the first member of the family to attend TCU, she was excited.
It doesn’t seem that long ago that Kate could have walked along this hallway and told the same stories to accompany these pictures. It is sad that her memory is now virtually gone. She can’t remember them at all. At the same time, it was a moment of joy for me to tell her these stories and for her to hear them. It is moments like this that sustain both of as we move into the later stages of our journey.
A Rough Start Getting to Our Routine
Yesterday I woke Kate at 12:15 so that we could have lunch before picking up a church friend to attend an operetta concert in the afternoon. It was one of those mornings when she is quite confused and didn’t come around very quickly. She didn’t know anything. Who I am. Who she is. Where she was. She felt very insecure, but it was similar to the last time in that it was not a full anxiety or panic attack. Fortunately, she responded positively to me. She wanted me to hold her hand going to the bathroom and didn’t want me to leave her. Just before leaving the bathroom, I did or said something she didn’t like, and she snapped at me. Then she apologized and started to cry.
After she was dressed, she wanted to hold my hand as we walked to the kitchen to get her meds. She continued to whimper a little. She kept asking me if I were her daddy. I told her I was her husband. Each time she couldn’t believe it. When we got to the kitchen, she called me daddy and then said, “Are you my daddy?” I said, “Would you like me to be your daddy?” She responded enthusiastically that she did. I said, “I would be happy to be your daddy.” She asked if I really were. I told her the truth. She accepted that but not with enthusiasm. I believe we are going through a transition in which she often thinks of me as her father. As that happens, I will be much less likely to tell her the truth. Right now, I sense that she still wants the truth and is able to handle it. This is one more thing that demands taking it one step at a time and making an informed judgment as to what is best.
While she was taking her meds, I brought her the “Big Sister” album. She reacted the way she usually does. She commented on the smiles and the children’s eyes. Then she asked if she could take it with us. I told her she could. We took it to the restaurant where she continued to enjoy the photos until the food arrived. By that time, she was herself again. Leaving the restaurant, she said she wanted to rest as soon as we got home. This now seems an established habit. I explained that we were going to a concert. She didn’t complain.
When we arrived at the concert hall, I let Kate and our friend out and then parked the car. When I met them in the lobby, I learned that Kate felt sick. She couldn’t explain what it was. She just didn’t feel right. She seemed relieved that I was there and didn’t want me to leave. She was willing to go ahead and take a seat in the concert hall, but I decided that we should leave. It just wasn’t worth the chance. Our friend said she would leave as well. I told her I would be happy to come back for her. She didn’t want that. Just then, a mutual acquaintance walked up and spoke to us. She asked if he and his wife could take her home after the concert. He was happy to do so, and we went home. As we walked to the car, she wanted a bathroom. I asked if she could wait until we got home. She said she could. Once we were home and she had been to the bathroom, she felt better. That was when she finally got to rest and did so for two and a half hours before we went to dinner.
I think her problem was twofold. First, she was having abdominal action and was uncomfortable. Second, I think she felt insecure being with someone who appeared to be a stranger to Kate. Once I arrived in the lobby, she did not want me to leave her, not even to get the car. When we got home, it was the same. I held her hand all the way to the bathroom. She didn’t want me to leave her.
She was fine from the time we went to dinner until we went to bed. Having heard stories from other caregivers, I suspect we might see more days like this. The good news is that our track record for late in the day is quite good. I only remember one evening when she had a panic attack. Otherwise, it has been the most consistently positive part of our day. I often wonder if that is because it seems to be the most relaxed time of day.
Kate’s Intuitive Abilities Make for Special Moments
Kate enjoys life. Hardly a day goes by when I am not touched by things that she says or does. They let me know that even without a memory, she is still in touch with life through her intuitive abilities. For example, Sunday morning as we were about to leave for lunch, she saw a coaster on her bedside table. It has a picture of orange flowers on it. We have had this set of coasters for many years. She had put it on her bedside table sometime in the past few days. She had no memory of ever having seen it. She said, “Can I take this with us?” I told her it was hers, and she could take it. She took it with her as we walked through the family room to the kitchen. She stopped to look at it more closely in the light of the family room.
Walking to the car, she held the coaster close to her and said, “I don’t want to lose this.” She continued to admire it on the way to the restaurant. She said, “You’ll have to keep me from losing this.” As we pulled into a parking space, she said she didn’t know where to put it. “If we leave it in the car, you’ll have to help me find a place that nobody will see it.” She didn’t want anyone to take it. Then she decided to take it into the restaurant with her and asked if that would be all right with me. I told her it would, and she walked in with the coaster in her hand.
After we were seated and the server came to our table, Kate showed her the coaster right away. Then she placed it on the table to the left of her plate. When we were ready to leave, she noticed the coaster. She asked me if it was ours or “theirs.” I told her it was hers and that she had brought it from home. She was pleased and enjoyed looking at it all the way home. She even remembered to bring it inside, and we placed it exactly where she found it to start with. By then, she couldn’t remember that, but she was happy.
We have a lot of musical experiences that I find touching as well. Returning from lunch the other day, I turned on an album of songs from a variety of musicals. She likes all of them and started singing along with “Some Enchanted Evening.” I joined in with her. She looked at me and said, “Hey, you can really sing.” (At this point, I need to say that I am not a singer at all. I sang in several choral groups in college, but I don’t have a natural gift for singing and have never had any vocal training at all.) To me this illustrates another of her qualities that I find endearing. She is not a critic. She is impressed with just about everything that other people are able to do. There is a sad side, however. This must arise from her inability to do so many things, but I am touched by her ability to enjoy and respect whatever talent she observes in others. She really enjoyed hearing me sing. (Note: That hasn’t changed her opinion that I am not handsome and have a big nose, but she still thinks I’m a “nice guy.”)
When we got home, “True Love” by Cole Porter in the 50s was playing in the car. I started to turn off the engine when she stopped me. She wanted to hear the rest of he song. We sat there together her hand in mine until the last note when we went inside.
Yesterday she used a cup she has had about a year but never commented on until then. She was delighted by the colors on it.
These are all little things, but it makes me happy to see her enjoying herself. I am hopeful these intuitive abilities will remain with her for some time to come.
Three Hours Later
I was about to finish this post this morning when I received a phone call from my brother. When our conversation ended, it was time for lunch. Kate and I returned home about forty-five minutes ago. That’s when we experienced another special moment. It reminded me of a similar experience this past fall. The difference was that last fall she didn’t recognize our house as our current home. I was never sure, but it appeared that she either thought it was the house in which she had grown up or a previous house in which we had lived. Today she clearly knew it was ours.
It began as we entered the driveway. She commented on the house and said how much she liked it. The spring flowers on trees and shrubs are coming out, and I suggested we take a look at the back yard. We walked around the yard. She was taken with the azaleas and dogwoods.
We came back through the garage where she stopped to look at her collection of Dr. Pepper memorabilia. Once inside she loved looking from our family room through the glass doors to the back hard. As she often does, she commented on what a nice room it is. Then instead of going to the back to brush her teeth, she wanted to go to the living room. That’s when I became something of a tour guide telling her about the various pictures, knick knacks, and furnishings I thought might be of interest to her. I was right. It was really an emotional experience for her. She didn’t recognize her own or our daughter’s wedding portraits or portraits of her mother or grandfather, but she loved hearing about them. She took great pleasure in seeing her mother’s silver service and her grandmother’s china. Of course, there were also things like the fresco over the mantel and our dining room furniture that we had purchased ourselves. She hadn’t remembered any of the things she saw. Seeing things and hearing me tell her the connections to our lives was a special joy for her.
From there we went through the kitchen and back to the family room taking in other things that meant something to her. Then she wanted to lie down on the sofa in the family room while I went to brush my teeth. When I came back, she was getting up and going to the living room again. She wanted to rest on the sofa among the things she had seen earlier in our walk through. Yes, her intuitive abilities are alive and well and providing her much pleasure even though I am sure she doesn’t remember any of the specific connections to our lives I had told her only ten minutes before. That would require her rational abilities, and they are almost gone. I think we could all take a lesson from Kate. She takes such pleasure in things that we take for granted. It’s a wonderful world.
P.S.
Just as I was about to post this entry, Kate walked in the room and saw the picture of her and her brother Ken on the cover of the “Big Sister” album he made for her. She smiled and said, “I just love this picture.” She is now resting peacefully on the sofa across from me. She’s happy, and I’m happy.
A Nice End to a Good Week
It’s Sunday morning. Kate is still sleeping. I’m thinking about the good times we’ have had this week. Kate has experienced her normal confusion, but we have been active. Both of us have enjoyed ourselves. After our trip to Flatrock to see Jeanne Robertson, we arrived in Knoxville in time for our regular lunch at Bluefish. As the server walked away with our check, she stopped at the booth behind us and asked if they wanted dessert. Kate thought she was speaking to us and said, “What do you have?” Rather than call the server back, I told Kate that I would take her to Marble Slab on the way home. She thought that was a great idea. After eating our favorite ice cream concoctions, we went to the house. Kate was ready to rest. That was followed by working puzzles before going to dinner. Once home, we had a quiet evening watching YouTube video segments of Andre Rieu concerts. When we got into bed, we talked about what a good day it had been and how many good days we’ve had during our marriage. We finished the day like any other married couple would do. I said, “I love you.” She said, “I love you too.”
I treasure days like this.
Thoughts on Dependence, Appreciation, and Responsibility
Yesterday was another very nice day for Kate and me. It was just one of many. It was also a day when I was a little more mindful of how dependent she is. Like other days in recent months, she looked to me for guidance on things you might not expect. For example, she asked me if she should take a tube of toothpaste and her hair brush with us when we went to Panera yesterday morning. After returning from lunch she asked me where she should go to rest. I told her she could lie down on our bed or the sofa in the family room. She chose the bed.
We don’t normally think about it, but our rational thought processes guide us most of the time during a given day. We remember that we have an appointment at a specific time and understand how much time we have to prepare before leaving. We remember the rooms in our homes and where we sit when we want to relax, and where to lie down when we are tired. When people with dementia lose these abilities, they don’t know what to do next. That is where Kate finds herself much of the time. It’s hard for those of us without dementia to fully understand what this is like.
Thursday is the only day of the week we don’t have a regular place for lunch. Since she was up early, and we had gotten to Panera and had no other commitments until haircuts at 3:00, I took her to a restaurant we’ve visited only a few times. It’s almost a twenty-minute drive, but it’s a nice place and worth it occasionally. We had a very pleasant lunch. Just before we left, she asked me if I thought she should use the restroom before leaving. We decided that was a good idea, and I walked her to it. As I often do, I waited outside the door just in case she needed something. It turned out that was a good thing. When she came out, she had a paper towel in her hand and didn’t know what to do with it. She hadn’t noticed the trash container inside. I took the towel and put it in the trash. Then I noticed a roll of toilet paper on the floor. I picked it up.
As we drove away, she said, “You know, when I’m with you I feel at ease. I know I’ll be all right.” I said, “Do you feel uneasy when I’m not around.” She said, “No, I can handle myself all right. I just feel better when you are with me.” I’ve often heard her say things like “I’m glad you’re driving. I could get home by myself, but it might take me a while.” She recognizes she has a problem with tasks like these, but she also likes to think that she can really take care of herself if she had to. I am glad that is something she can hold on to.
Kate has always been appreciative, but she is becoming more so as her dependence increases. She thanks me for specific things like helping her find the bathroom or getting back to bed. She also thanks me at times when I haven’t done anything. I occasionally read several online message boards for caregivers. I realize that many caregivers don’t receive this kind of gratitude and, because of that, sometimes feel resentful. That’s not an experience I’ve had. That makes caring for Kate easier than it would otherwise be. In fact, her decline and her appreciation act together to give me a greater sense of responsibility and determination to see that her needs are met. Like other caregivers, I am guided by two broad goals – to keep her feeling safe and secure and to keep her happy. Her response to my efforts reinforces that commitment to her.
That reminds me of something else that is true for all successful marriages. Marriage involves two people working together. Kate and I are still partners. Her dependence doesn’t mean I am working alone. She’s unable to do much for herself now, but she is still doing what she can for me. She does that with her expressions of appreciation. That makes all the difference in the world. When she was first diagnosed, we said we would face this challenge together, and we are.
Thirty minutes ago, Kate got up to go to the bathroom. I went to her. She asked me where the bathroom was. I showed her. When she came out, she asked if she could go back to bed. I told she could and that I would let her know when she needed to get up for her eye doctor’s appointment at 10:30. She thanked me. As started to walk away, she said, “What is your name?” I told her. She said, “What is my name?” She said, “And what is your name?” I told her again. She said, “What is my name?” She repeated both questions one more time. She didn’t ask out of fear or anxiety. She simply wanted to know our names. She looks to me for help with things like that. I’m glad to be here for her.
What a Difference a Smile Makes
Several times I’ve mentioned Kate’s smiling as I enter the bedroom to check on her in the morning. I love that smile. It reminds me of those days before Alzheimer’s. Even now as I understand that the smile doesn’t mean that she remembers my name or that I am her husband, her smile gives me a good feeling. I think “What a great way to start the day.”
It’s not always that way. Take yesterday for example. She wasn’t smiling. Instead, she looked as though she wished I hadn’t come in. Now that I am more aware of her ability to learn intuitively, I suspect she knows that when I walk in, I am probably there to get her up. Yesterday she told me she wanted to stay in bed a little longer, perhaps a lot longer. So it is understandable that she didn’t smile. It was only when I told her Mary, our sitter, was coming and that I hoped I could take her to lunch that she decided to get up. As usual, she was appreciative and thanked me for helping her get to the bathroom and dressing, but she expressed her independence and was irritated at my attempt to help.
She joked with me as we prepared to leave the house. It was one of those times when her jokes had a little bite to them and, of course, at my expense. I didn’t joke with her. Kate has never been one to joke. I have often joked with her. Like all jokers, I sometimes go too far. A year or two ago, I felt our joking with each other was getting out of hand. I stopped. I started responding more lovingly all the time even when she joked with me. I think that had a great impact. She still likes to kid me, but it seems less bitter.
She didn’t say much as we drove to lunch. As I helped her out of the car, she said, “I love you.” For the balance of the day, she was just fine. When we went to bed, she said, “It’s been a wonderful day.” I agreed. I like her smiles. Even when she doesn’t begin with a smile, she ends with one.
A Tender Moment This Morning
I looked at the clock. It was 5:45. As I rolled over to get up, I heard a soft chuckle. Kate often does this when she recognizes that I’m awake. I think it’s her way of saying, “Hello, I’m awake too, but I’m not ready for conversation.” I reached over and touched her arm. She pulled my arm around her. It was a loving response. She didn’t appear to be afraid. She just wanted to be held. Neither of us said a word. I held her until 6:15 when I got up.
As I was finishing up in the bathroom, she came in. When she was ready to go back to bed, she said, “What do I do now?” I told her it was still early and that she should go back to bed. She said, “Where is it?” I walked her to the bed. She sat down and said, “Thank you.” I said, “I love you.” She smiled and said, “I love you too.” Then, as so often happens, she said, “What’s your name?” This is just another example of the loss of her rational abilities while retaining those that are intuitive. In this case, her feelings for me. Tender moments like this continue to sustain me as her life and mine keep changing in ways I wish I could stop.
Relieving Confusion
Kate seems to be entering a new state of confusion. For months, I have noted that she sometimes forgets I am her husband. In the past few days she has more frequently asked if I am her daddy. I believe this represents a further step along the way to totally forgetting who I am.
It also requires me to think more carefully about telling her who I am. I believe when she asks, she really wants me to tell her the truth. I’m not going to correct her if she calls me “Daddy.” On the other hand, I will continue telling her the truth when she asks unless or until I see any harmful effects. Even though she is usually surprised to find out that we are married, she hasn’t seemed especially disturbed. Yesterday morning she even reacted positively. When I told her I was her husband, she had a funny look on her face. I asked if that bothered her. She said, “No, I like that. You’re a nice guy.” I intend to watch carefully for any change and make adjustments accordingly.
So far I have been encouraged by my ability to lead her out of confusion. This morning’s events are a good example. I didn’t see or hear her when she got up at 7:30 to go to the bathroom, but I heard her say, “Hey.” I found her in a hallway where she had just come out of the bathroom. She asked me what she should do. I wasn’t quite sure what to say. Except for her reliance on me to tell her what to do, she seemed much more alert than usual. It looked like it would be easy to have her take a shower and get dressed. The fact that it was so much earlier than she usually gets up made me think she should rest a little longer. I suggested she do so. When I pulled the covers over her, she said, “What do you want me to do now?” It didn’t sound like she was ready to go back to sleep. I decided to get her up for a shower.
She got up right away and wanted to know where to shower. I walked her to the bathroom. In keeping with her previous line of questions, she wanted me to tell her each step to take.
After her shower, she went back to bed and fell asleep. I got her up shortly after 11:00 so that she would be ready by the time the sitter arrived at noon. Since she was waking up from a sleep, I wasn’t surprised that she was just as confused as she had been earlier. I went to the family room and brought back the “Big Sister Album” Ken had made for her last spring. She took one look at the cover picture of her and her brother. She smiled and commented on the smiles of the two children. She loves that picture. She asked if that was a picture of her. I told her it was. She wanted to know who the boy was. I told her it was her brother Ken. Then I suggested we go to the family room, and I would show her pictures of her mother and father. She liked that.
As we looked through the pictures, she seemed to gain a better sense of who she is. She still had trouble remembering the people in the pictures, but she recognized some of them. As she did the last time we looked through it, she recognized her grandmother, calling her Nana. In contrast, she repeatedly asked me her parents’ names.
This experience and others like it have made think once again about rational and intuitive abilities. Looking at the pictures didn’t help her identify the people (rational ability); however, it did eliminate her confused feeling (intuitive ability). She seemed to have a sense of connection to her family that was calming. She is especially sensitive to the smiles in all the pictures. As we move from picture to picture she says things like, “Oh, look she’s smiling,” “She’s not smiling,” or “Look at his smile.” The smiles have a real impact on her and bring smiles to her face.
My original intent was to let the sitter take Kate to lunch, but I didn’t have Rotary and decided to go with them. That gave me an opportunity get a little better acquainted with her since this was her second time. I had the same good feeling about her that I had last week. Kate did as well. Before leaving, I put in a DVD of Fiddler on the Roof for them. When I returned they were watching.
Kate was tired and wanted to rest a while. When she got up, she wanted to know what she could do. I told her she could work puzzles on her iPad. She didn’t know what an iPad was. She forgot the name of the iPad quite a while ago and often doesn’t know what it does when she sees it. I got the iPad and gave it to her. She sat down and asked me where we were. I told her we were in Knoxville. She said, “Good. I thought we were in New York.” I said, “I thought you loved New York.” She said, “I do, but I like it here. We come here a lot.”
An hour later we left for dinner. Friends we met at Casa Bella had invited us to dinner at an Italian restaurant near their home. We’ve gotten together several other times and enjoyed being with them. We had a good meal and pleasant conversation. As usual, Kate handled herself quite well.
It is becoming increasingly difficult for her to follow conversations. A number of times she stopped one of us to explain something she missed or didn’t understand. I think the problem occurs with the shift of conversation from one person to the next. It’s just too fast for her.
I’ve noticed other things like that. Increasingly, she wants me to simplify things I tell her. It’s confusing to say, “Here are your clothes. Put on your top and pants.” When I do that she says, “Tell me one thing at a time.” When looking at photos, I might say, “Look at this picture of your daddy.” It takes her a while to locate her father even if my finger is on the picture. It’s as though she sees a vast array of stimuli and doesn’t know where to look.
From the time the sitter arrived until we went to bed, Kate didn’t show any unusual signs of confusion. I don’t mean that she didn’t experience any confusion. For example, she never knows where she is and usually doesn’t know my name or hers. What I mean is that she didn’t show any signs of being disturbed by her memory problems. I didn’t specifically ask, but I think she knew I was her husband. I know that sometime during the late afternoon or at dinner she mentioned our two children. Her day was highlighted by her “Big Sister Album” and having dinner with friends. It was a good day.
