This may not be a big thing for anyone else, but it is symbolic of the recent changes in our lives. As we left the car to enter Panera this morning, I said, “We’re going to get you a muffin.” Kate said, “What’s a muffin?”
You might think that by now I would have a pretty good grasp of what Kate is thinking and feeling. I spend almost all of my time with her. I try to be a careful observer. I’ve read a good bit about others experiences and their insights, but what strikes me most is how little I really understand. I often relate my impressions and my guesses as to why she does what she does. I hope, however, that I never suggest that I have a firm understanding of everything. I don’t. Yesterday morning I had an experience that illustrates how wrong I can be.
Kate got up for the day about 8:15. She was happy and seemed very clear-headed. I didn’t see any sign of grogginess. She called me by name at least twice after getting up. I never asked, but I was confident that it was one of those times when she knew my name and hers and that I am her husband. Except for helping her dress, it seemed like a morning we could have had pre-Alzheimer’s.
On the way to Panera, we talked a little about our marriage. As we drove up to the restaurant, she said, “And what is my name?” I told her and she repeated it. She quickly forgot and asked me again. Then she said, “If someone should ask, how should I introduce him?” I said, “Who?” She said, “Him sitting across from me.” I said, “This is Richard Creighton.” It turns out that’s what she wanted, my name, but she was asking in what she thought was an indirect way. All the while she behaved as though her memory was perfectly normal. She fools me like this on a regular basis. No wonder she can be with other people without their sensing how far along she is or that she has Alzheimer’s at all. How many people with dementia do you suppose we confront during the course of our daily lives without suspecting a thing?
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.
Visits with friends and family have always been important to Kate and me. That’s true for most people; however, they have played a more significant role for us since Kate’s diagnosis. I’ve been especially mindful of that during Ken and Virginia’s visit with us the past few days. I hated to see them go. The fact that Ken was diagnosed with Alzheimer’s almost five and a half years ago has heavily influenced our relationship. It’s not that we talk a lot about dementia itself. We don’t do that at all in Kate’s presence since she no longer remembers that she has the disease. I don’t see any reason to tell her. We do, however, have such conversations before she gets up and when she rests.
What is more important is that they have such a clear understanding of what this journey is like. They may have picked up a few things from reading this blog, but most of that comes from their own personal experiences. That makes a difference in our interaction when we are together. When they are here, I have a feeling the three of us are partners as caregivers for Kate. They understand how to relate to her in a way that is difficult for just anyone else to do. I feel a load is taken from me. I still get her up and see that she is dressed and ready for the day, but when we are together, she interacts with the rest of us. The fact that we share a common set of experiences as part of the same family is also important. That expands the range of topics we can talk about in ways that couldn’t happen with even our closest friends.
Ken himself has taken steps to remain close to his sister. One of the best things he has done is to have given her the “Big Sister Album.” With 140 pages of photos covering their lives from Kate’s birth to January 2018, it has provided countless moments of pleasure for Kate since he gave it to her a year ago. We keep in on a coffee table in our family room. The cover photo of her and Ken when they were about four and two catches her eye almost every day.
Because it contains so many memories of their lives including their extended families, Virginia and I have enjoyed letting them take some time just to themselves to go through it. They looked at it for almost an hour yesterday afternoon. After dinner last night, they went through it again. This time Virginia sat across from them. When they had finished, Kate put it down. Then Ken said something about the cover picture. She didn’t know what he was talking about and showed her. She didn’t remember who the children were. Ken told her. She seemed confused about Ken in the photo and Ken sitting beside her. It didn’t appear that she remembered that they are the same person. As they moved to other photos, she did refer to Ken by name. I was never quite sure what she understood and didn’t.
As Kate continues to decline, there is another aspect to visits like this. Will this be their last visit together? None of us expects this to be the last, but we don’t know. Ken and Virginia are planning to return in the fall. How will Kate be getting along then? She won’t be the same . How will that affect our time together? Like so much of this journey, we just don’t know. All four of us are living in the moment. One step at a time. That has served us well thus far. I trust that it will in the future. In the meantime, I will savor the memories of a very pleasant visit. I wish Kate could do the same, but she enjoyed the moments.
I am glad to report that yesterday’s visit with Ken and Virginia went very well. I have no idea how much of the time Kate recognized the two of them by name and/or relationship. What I know is that she enjoyed herself.
After the previous night in which she was confused about them, yesterday’s experience was a welcome one. Ken and Virginia came over about an hour before I woke Kate. When I got her up, I told her they were here and that we were going to take them to lunch. She was resting comfortably. I know she could have stayed in bed much longer, but she got up easily. When I brought her into the family room, I said, “Guess who’s here? Your brother Ken and Virginia.” They greeted her warmly, and we were off to a good start.
I had talked with Virginia about our going to the zoo after lunch. She and I both had mentioned that to Kate who responded negatively. That isn’t unusual except that her response seemed to be stronger this time. In the past, I have found that once we are there, she enjoys herself. I think it’s a good place for her because we do it leisurely, and she always finds things that are interesting. That happened again yesterday.
When we arrived, I suggested that they get out while I parked the car. Kate said, “Can’t I go with you?” That was the only indication of any insecurity I noticed the entire day. Instead of trying to take an overall tour, we went directly to the aquarium and reptile center. Kate especially enjoyed the fish. Then we went to see the Koalas and feed the Lorikeets. The latter is always a hit. Kate said she was hungry. We suggested getting ice cream which we did after leaving the Lorikeet exhibit. It was a perfect day for the zoo. Although it was windy, it was sunny and in the 70s. It was pleasant walking around as well as breaking for ice cream. From the zoo, we came home. Ken and Virginia went back to their hotel. Kate rested as well.
About an hour later, we went to dinner and then had some additional time for conversation at home. That turned out to be especially good for Kate. As people our age are prone to do, we reflected on our lives and the way we felt about the way life had turned out for us. That led to a longer conversation about our families, especially our parents. That opened the floodgates for Kate who has a strong admiration for her mother.
I doubt that any of the “facts” she told us were things that actually happened, but they did convey the truth about her feelings for her mother and herself. What she said was very self-revealing. She felt a need to live up to her mother’s reputation and found that intimidating. She told us that her mother and some of her mother’s friends had encouraged her to be her own person. She also talked about her own school achievements, especially academic ones. (These were true.) She didn’t say anything about her Alzheimer’s, but I am sure she has felt a loss of self-esteem. She often says things like “I’m smart, you know.” Or “I’m not stupid.” Indeed, she is not, but Alzheimer’s has altered brain in a way that makes it appear that she is.
I felt that this was a conversation that she couldn’t have had with anyone else. I’ll never know if she remembered their names or their relationship to her, but she clearly felt a kinship with Ken and Virginia. They listened to her and facilitated her conversation. They understood about living in her world. At one point, Ken said something about their father. Kate said, “My father did (or said) that too.” Ken started to explain that they had the same father and realized that was unimportant and let it pass. This kind of facilitation worked. Kate talked more than in a long time. I was happy for her to have such a receptive, understanding audience.
Like so many things, especially when it comes to airline travel, Kate’s brother, Ken, and his wife, Virginia, experienced a delay in their arrival yesterday. We were to have had dinner with them last night, but their flight didn’t get here until close to 9:00. I regretted not having that time with them but invited them to drop by our house on the way to their hotel.
They arrived at the house just after 9:30. Kate and I were in the family room when I heard them at them at the door. I got up to greet them. Kate stayed in her chair where she was working a puzzle. Ken and Virginia entered the family room ahead of me and said hello to Kate. They hugged, and she greeted them warmly. Everything seemed perfectly normal. It was a beautiful reconnection with her brother.
We talked about the day’s travel experience and laughed. They were both able to take it in stride. We caught up with their children and grandchildren. We talked a little about our courtship and a letter that her mother had sent to my mother talking about our “friendship.” There were times when Kate was confused and asked for clarification and spoke very little. Otherwise, she was enjoying the conversation along with the rest of us.
After an hour, Ken and Virginia left for their hotel. As soon as they walked out, and I had closed the door, Kate whispered to me, “Who are they, and what are they doing here?” I told her their names. She didn’t recognize them. Then I explained that Ken is her brother, and Virginia is his wife. I was floored that Kate had not realized this. She must have spent the entire time without knowing who they are.
This experience is a good illustration of a couple of things. First, it shows that even someone (me) who knows her condition best makes mistakes in judgment. I know that her memory is gone, but in many ways she still seems very normal to me. That often leads me to expect more of her than I should.
Looking back, I see that I didn’t handle the situation the way I should have. We had been sitting in the family room for over an hour without my reminding her that they were on the way and would be here soon. Of course, she forgot about our earlier conversations about their upcoming visit. I can’t remember exactly what I said when I heard them at the back door. It was probably something like, “They’re here.” That would mean nothing to Kate. In my haste to welcome them, I didn’t even walk ahead and tell Kate, “Your brother Ken and Virginia are here.”
The experience is also an example of how poor Kate’s memory (rational ability) is and how well she is able to handle a social situation through her intuitive abilities. Ken and Virginia are well-informed about Kate’s current decline. I am sure they noticed some changes since their last visit. On the whole, however, my guess is that they didn’t sense just how poor her memory is. I will be eager to get a chance to find out today.
Kate woke up around 7:30 yesterday morning to go to the bathroom. She seemed rather alert. I didn’t ask, but she acted as though she knew exactly who I am. I realize, however, that appearances don’t necessarily jibe with reality. She went back to bed and slept until 10:30. This time she was confused.
I asked if she was ready to get up. She said, “I don’t know.” She didn’t look disturbed or frightened. It wasn’t the way she has been when she has had anxiety attacks. I asked if I could help her. She said, “I don’t know.” No matter what I said she said “I don’t know.” Then I suggested that she take a shower and that might help to wake her up. She didn’t want to shower.
I took another tack. I told her she should get dressed, and we could go to the family room where I might be able to show her something that would help. As she was dressing, she asked my name and her own several times. When she was finished, we went to the family room where I picked up the “Big Sister” album. We spent about about twenty minutes looking through it before going to lunch. She didn’t recognize the cover photo of herself with her brother. When we opened to the first page of pictures, she didn’t recognize herself, or her parents. As she has done in the past, she didn’t recognize her father after I identified her mother who was sitting with him. Although she didn’t show any improvement in recognizing her family, she did seem more comfortable than before. Her intuitive abilities were working.
As we drove to lunch, she seemed normal, and I was beginning to think she knew who I was. When we walked from the car to the restaurant, she asked my name. Similar moments like this over the past week suggest that she is close to losing the ability to remember my name and relationship to her. I am not expecting this to happen suddenly, but it is becoming more and more difficult for her to remember my name. I know it will only get worse. I still take satisfaction that she recognizes me as someone she trusts.
Yesterday on Twitter I exchanged several message related to the important of feeling safe among those living with Alzheimer’s. I am also encouraged that she continues to say that she feels safe with me. When this first started occurring, I didn’t know what to make of it. The more I have watched her decline and the more I have read, I have come to realize how frightening it must be not to where one is, who one is with, and “who I am?” I don’t think I would feel safe either.
When we got home, we had about twenty minutes before our sitter, Mary, arrived. Kate wanted to know what she could do. I showed her the three-ring binder with a lot of personal and family information. She was interested. When I left for the Y, she and Mary were seated side by side on the sofa going through the information. I was encouraged.
When I got home Kate was resting on the sofa while Mary sat in a chair across from her. Mary said that she and Kate had spent most of the time looking through the binder and then a couple of the photo books. She said Kate had been resting about an hour.
The rest of the day was uneventful. Kate indicated she was glad I was home and wanted to know “What next?” I told her it was time for dinner. When we returned home, she worked on her iPad until time for bed. She needed my help periodically but never showed any sense of frustration.
She got to bed a little earlier than usual but was still awake when I joined her an hour later. This morning she was up at 8:30 and took a shower. She didn’t show any signs of confusion or grogginess and acted normally toward me. I had her clothes out for her, but she went back to bed where she is resting/sleeping now. We don’t have any special obligations today. I will let her sleep until 11:00 if she doesn’t get up earlier.
The big event of the day actually comes tonight. Kate’s brother, Kevin and his wife, Virginia, are flying in for a short visit. Their flight doesn’t arrive until 7:00 this evening. They are renting a car and will meet us at the restaurant where I have made dinner reservations. Kate has changed a good bit since their visit in the fall, but I am optimistic that it will go well. I will be eager for the two of them to have some time together as they did on their previous visit. We have plenty of photo books to inspire good conversation. I am looking forward to having them with us.
After resting so much the day before, I hoped that Kate would be up a little earlier yesterday. I got my wish. I didn’t have to wake her. She wasn’t up early enough for Panera, but we did get to lunch shortly after 11:30. She was happy, and we enjoyed our lunch time together.
It didn’t surprise me that she wanted to rest as soon as we got home. She is doing that quite regularly these days. We had hair appointments at 3:00. About 2:25, I reminded her of that, and she got up right away. She took a little time to brush her teeth and use the bathroom, but we arrived for our appointments almost ten minutes early.
When we returned home, she worked on her iPad until time for dinner. That was a little over an hour. She continues to have trouble with the puzzles but did pretty well.
The best part of the day occurred at home after dinner. I have mentioned before that Kate often says, “That goes in the book.” She does that whenever we are talking about things that happened in the past. Almost a year ago, I jotted down a number of things that I thought were of importance to her. That includes the names of her family (grandparents, parents, brother and his wife, our children and grandchildren) our courtship and marriage, places we have lived and traveled, as well as a couple of letters I had sent to my parents when we were dating, one from Kate’s mother to my parents during that same period of time, and another from our son that he sent to us after our 50th anniversary. I put the information in a three-ring binder and included some family photos in the back.
After dinner, I asked Kate if she would like to look at it while I watched the news. She did and enjoyed it. It was difficult for her to read, and she asked me to read parts to her. I was pleased that she was interested. She hasn’t expressed much interest until the past few days. She prefers her photo books. I suspect her memory loss may play a part in the recent appeal of reading about things that have been so much a part of her life.
Going through the book gave a little more understanding of the challenges she has with reading and her photo books. For example, I read the letter from our son. I, of course, told her it was from Kevin. In addition, he talks about us and our marriage from his perspective throughout the letter. When I finished with “Love, Kevin,” she was almost in tears. She said it was beautiful and thanked me for writing it. It’s another illustration of the weakness of her rational abilities and the strength of her intuitive ones. She couldn’t remember that it was from Kevin nor pick up that it was from him by what he said. She was, however, able to pick up on the feelings expressed. She may have assumed it was from me since I read it to her.
Another example involved four photographs I had just added to the binder. One of those is of her grandmother that was taken in Lucerne, Switzerland in the mid-1930s. The other is one of us taken in the same spot in 2015. I had them enlarged to 8 x 10s so that she could see them more easily. I told her who the people were and asked if she noticed anything about where the pictures were taken. She didn’t understand what I was asking. I said, “Do you see anything similar about the two pictures?” It took a lot of help on my part for her to see they were taken at the same place. She would never have noticed without my help.
The other two pictures were of her mother taken on the boardwalk in Quebec City with the Chateau Frontenac Hotel in the background and one of Kate taken in the same place. Her parents had stayed at the hotel on their honeymoon in 1936. We stayed there our on our 41st anniversary in 2004. I went through the same routine with these pictures. I’m not sure she ever understood what they had in common. If she did, it didn’t generate any interest. She was, however, interested in the binder’s overall contents. I am glad about that because it gives her something else to enjoy besides her puzzles and photo books. I also intend to add more information. There is plenty of material I can add. The challenge is how to package it in such a way that it is not overwhelming.
By the way, I originally printed it in a 14-pt. font. I have gradually increased it to 36. I think that may be where I stop. She seemed to be able to read that.
Yesterday I left Kate with the sitter fully confident that they were headed to lunch. I had waked her moments before Cindy arrived. When she walked in, I said, “Your Monday lunch date has arrived.” Kate greeted her warmly. I left feeling like I had set things up beautifully and that they would have good time at lunch while I was at Rotary. The big surprise came when I arrived home.
Kate and Cindy were seated in the family room. Kate was looking through a TCU magazine. I got the impression that she had just opened it. I asked about lunch, and Cindy said they never got to lunch. Kate told her she wanted to rest. She apparently did so until near the time I got home.
I walked Cindy to her car and told her I was disappointed that Kate had not had lunch and that she had napped so long. I started to encourage her to be more assertive with her next time. Then she said she tried several times to get her up, but Kate preferred to rest. I told her that she did the right thing. I didn’t want her to force her. She suggested that next time I might walk to the car with them and that she might be more responsive to me than to her. I’ll think about that. I do think this particular sitter is a bit timid. I am sure the person she replaced would have gotten her there.
After Cindy left, I figured that Kate would be ready to get out of the house. It didn’t happen. She said she wanted to rest. She proceeded to rest for another hour before we left for dinner. When we returned from our Monday night Mexican meal, she worked puzzles for about an hour. Then we adjourned to our bedroom where she spent another hour looking through the “Big Sister Album.” This was the first time that I have been aware of her spending so much time by herself with the album. I usually look along with her but decided to see how she would do without my help. I was glad to see that she could appreciate what she was seeing; however, she did call on me frequently to identify people and to read some of the text.
I was a bit concerned about her having trouble going to sleep, but we went to bed at the usual time. After all the rest she got yesterday, I expect that she will be ready to start the day a little earlier today. I hope so, but I also sense that her recent erratic habits with sleep and rest are another sign of the decline she is experiencing.
Kate got up at 6:15 this morning. She went to the bathroom. Then she asked what she should do. I told her it was still early and thought she might like to go back to bed. She accepted my suggestion and stayed there until 7:30 when she got up again. I went to the bedroom to see if she needed anything. She wanted to know if she had something to do. She wasn’t specific, but it seemed like she thought she might have an obligation to be someplace. I told her the only thing on her agenda was to have lunch with Cindy. She is the sitter that I have tried to position as a friend who takes her to lunch while I go to Rotary. Of course, she stays longer than it takes for lunch, but Kate doesn’t have a sense of time.
Then Kate asked what she could do “right now.” I told her I could take her to Panera for a muffin. She liked the idea. As we drove up to the restaurant, she said, “We’ve been here before.” We stayed less than an hour before she wanted to go home.
When we got home, we sat down on the sofa in the family room to look at one of her photo books. I chose the “Big Sister” Album. We started with the front cover. I said, “Do you know who they are?” She pointed to the girl and said, “Moi.” Then I asked about the boy. She said, “My brother.” I asked if she knew his name. She said, “What is it?”,
We looked at a photo of her mother and father with Kate nestled in between them. I pointed to her mother and asked if she knew who that was. She hesitated a moment and then said, “My mother.” I asked if she knew her name. She said, “Kate.” I said, “That’s your name. She laughed, and I said, “Your mother’s name is Elizabeth.” Then I pointed to her father and asked who he was. She didn’t know but guessed that he was an uncle.
We didn’t get but a couple of pages before she said she was tired and asked if we could look at the album later. I told her that would be fine, and she lay down on the sofa. She said, “I might not see you for three hours.” I wasn’t surprised. She had gotten up much earlier than usual. She needed the sleep.