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Kate’s memory is fading quickly.

There is no way that I can measure the speed at which Kate’s recent decline in memory has occurred. I only know that she has changed more in the past two months than I can recall for any period since her diagnosis. It is no wonder that she has periodic attacks of anxiety. It’s harder to understand why she hasn’t had more.

Her sense of direction has always been poor, but her difficulty knowing where to go in the house has surprised me. I hadn’t really thought about this before. I guess I assumed she would be on autopilot in the house forever. To some extent, she still is. Yesterday, for example, she said, “Where is the bathroom?” I told her I would show her and walked her toward our bedroom. As we were leaving the family room, she turned and went into the guest bathroom. That is the one she has used most often. She must have recognized where she was the moment she walked out of the family room.

Earlier today at Panera, I asked someone I know at a nearby table to watch her a minute while I went next door to make an appointment for Kate to get her nails done. When I came back, she said, “What’s my name?” I gave her the full name, and she asked me to repeat it.

She got along well yesterday. I don’t mean that her memory was any better. I mean that she isn’t showing any sign of unusual worry or concern over her memory. I sat in the waiting area of the nail salon while she is finishing up. She  handled herself well with the person taking care of her. When I left her, there was a brief moment when she seemed to be concerned that I was leaving her. I told her I would be next door at Panera. On the whole, it is still amazing how well she gets along in brief social encounters.

Last night, we went to Casa Bella for Broadway night. We had another good evening, but it was a very challenging one for Kate. We sat at a larger table, and the entire crowd was noisy. There was absolutely no way that she could keep up with the conversation. At first, she tried. That required her asking others or me to repeat things just said. It didn’t take long before she just bowed out of the conversation.

When we got home, she walked to our bedroom without any problem. In a few minutes, I went to the bedroom. No lights were on. She was standing in the middle of the bedroom. She asked where she should go. I told her she could stay right there in the bedroom and that I would get a night gown for her. She went through the usual challenge of getting her clothes off and putting on her gown. Sequencing is a problem for those with dementia. Getting dressed or undressed involves sequencing. Now that I’m watching and helping her dress, I am getting a better understanding of this issue. I am beginning to help by telling her what to do at each step (take off your shoes, your socks, etc.).

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Another Difficult Moment

About 7:45 this morning, I went to the bedroom to check on Kate. I don’t know why. Knowing that she sleeps much later than that, I usually don’t check on her before 9:00 or 9:30. I am so glad I did. As I walked in, I could hear her whimpering. She has never been one to cry until the past few months during when she has experienced anxiety attacks and two recent moments when she was very sentimental. Those experiences immediately made me think about her anxiety over her memory loss. I am sure I was right.

I got in bed and held her. I asked what was wrong. At first, she didn’t say anything. She just continued to cry. She often has trouble expressing her feelings. I continued to hold her. A few minutes passed. Her cry became more than a whimper. I said, “You sound like you’re afraid. Are you afraid?” She held her head up and nodded. I said, “Life can be hard, can’t it?” Then I asked “What are you afraid of?” She said, “Losing you.” I said, “You could never lose me, I will always be with you.” Another few minutes passed. She continued to cry softly. Then she said, “I don’t even know who I am.” I told her and then told her about her parents and our children.

I have a wireless audio system that I can control with my phone. I pulled the phone out of my pocket and turned on an album of Russian sacred music. It is very peaceful. She said she liked it. I continued to hold her, and she slowly began to stop crying. Several times she said, “I don’t want to lose you.”

After a while, she said she would like to lie in bed a while. I told her I would get my computer and sit in my chair next to the bed. She rested another 45 minutes. Then she got up. She looked a little confused, but she wasn’t crying. I hope that she has already forgotten what had happened. I just wish I could keep this from happening again.

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Confusion in the Evening

As we were driving home from dinner last night, Kate said, “Everything looks so different to me.” I wasn’t sure if she just didn’t recognize what she was seeing or if she thought she was in some other place than Knoxville. It wasn’t long before I discovered she was mixing up Knoxville and Fort Worth.

When we drove up to our house, she said, “I remember this house.” I said, “It’s been a nice place for us to live.” That made me think she knew that we were home, but I wasn’t sure. After we were inside, she said, “I’ll follow you.” This is becoming a pattern. She is definitely unsure of herself in the house, that is, unsure of which room is which and where she should go. I told her to follow me and walked into our family room. She said, “It looks so different now.” I said, “So you think it’s changed.” She said, “Oh, yes.” Then she said, “This is a nice room.” She looked around the room as though it were a house we had lived in years ago and said, “This is a nice house.” I agreed with her.

Then she asked me what she should do. I told her she could relax in the family room for a while if she wanted and that we might watch a little of Fiddler on the Roof later. That seemed to suit her. She took a seat in the family room and picked up her iPad. I went to our bathroom to prepare her meds for the week ahead. When I returned with her evening meds, I found that she was not working on jigsaw puzzles but looking at photos. Recently, she has been accidentally touching the photo app as opposed to the puzzle app. She wasn’t unhappy about it, but she said she was trying to find photos of TCU. There weren’t any on her iPad.

I sat down with her and did a Google search for the photos she wanted. We looked at some of the recent ones. The she wanted to see old photos. I found a few of those as well. When we had finished, she said, “Sometimes I wish we had gone to school here.” I said, “Do you mean at TCU?” She said yes. It was then that I understood that she was confusing Knoxville with Fort Worth. She thought we were in Texas. I told her we had met at TCU. Then she said how glad she was about that. It wasn’t long after that when she said something about our living in this house. Once again, it seemed like she was responding to some aspects of her surroundings as though she was in Fort Worth and others as though she knew she was in Knoxville. This is another example of the kind of things that don’t make sense to someone who doesn’t have dementia but seems quite all right to a PWD. The best way I can think of it is to compare it to dreams we sometimes have. It is not unusual at all for contradictory or impossible things to happen in the dreams of normal people. This kind of experience seems to invade the world of PWDs.

There are moments, however, when I will say something that causes her to see that she has done something strange. This afternoon, for example, before we left for dinner, she had gotten an old Time magazine, a container of deodorant, a brass knick knack that looks like a business card holder, and a ceramic coaster to take with her. As she did the other night, she saw a picture of our son and asked about bringing it and a picture of her father with her. I asked where she thought we were going. Then she put the things down and said, “I can just leave them here.” This was said without any anger or disappointment. When this happens, it appears that she recognizes that she must be doing something wrong and stops.

Before going to bed, we had two other instances of her not being able to find me in the house. That wasn’t because I was in an unusual place. In fact, I heard her call me.  “Richard, where are you?” I said, “I’m in the bedroom.” She didn’t come in. Then I heard her ask again. This time she found me. I think she had picked up the direction by the sound of my voice and not by knowing where the bedroom is. This kind of confusion is opening a whole new experience that I hadn’t really thought much about. I wonder how she will handle such things with the sitter. Kate may not want to ask her where she “should go” or do. I plan to let the sitter know that she is forgetting her way around the house.

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More Confusion

Today Kate has been in a very good humor but continues to display much confusion. That was evident first thing this morning. I always close the door from the back of the house to our family room when I leave the bedroom each morning. That way I don’t have to worry about the radio or my music waking her. I was in the kitchen when I heard her open the door. I looked up to see her poke her head out. Then she turned around and went back to our bedroom. I walked to the bedroom and found that she had walked over to the bathroom door. She always closes it when she leaves. She didn’t walk it. She looked in and turned around and called my name. I said, “Here I am.” She said, “I was worried. I didn’t know where you were.” (By the way, that is usually my line.) I told her I didn’t mean to hide from her, that I was in the kitchen. It struck me that the house is becoming much less familiar that she didn’t know where to look for me. She had probably looked in the other bedrooms and then quickly glanced at the family room without remembering that I am usually in the kitchen until she gets up.

That thought was reinforced when we got home after lunch. She just stopped as we walked into the family room and asked me where she should go. I suggested that she take a few minutes to brush her teeth and then meet me in the family room where we could relax for a while. I led her from the family room and told her she could brush her teeth in our bathroom or the one with the guest room. She chose the latter, a frequent choice.

Once she was settled in her chair, I put on some music I knew she would enjoy and returned a phone call to a friend in New York. It is a little windy today, and she enjoyed looking out the back at the gentle swaying of the trees. When I finished my phone call, I asked if she would like to get out of the house. She did. I suggested we go to Barnes & Noble.

Before leaving, she went to the back of the house. When she returned, she was carrying a tube of toothpaste, a tooth brush, a magnifying glass, a “snow flake” globe that was a souvenir from Glen Arbor, an old bra, and a small US flag for use as a table decoration. I said, “What do you have there?” She showed me each item and put the tooth brush on the table between our chairs and left it there. Before leaving the family room, she asked (using hand signals) if she should bring a framed picture of her father and another framed picture of our son. I told her I thought we could leave them.

After we had been at Barnes & Noble for a while, she said, “What’s the theme?” I didn’t know what she meant although the only association I had was the weekly theme at Chautauqua, but we’re in Knoxville. A few minutes later, she asked, “What day is it?” This is not a typical question. I told her it was Saturday. Then she said, “When does it . . .?” She didn’t (couldn’t?) finish the question. Again, I wasn’t sure what she was talking about but connected it with Chautauqua. I asked if that was what she meant. She did. I told her it was over for the summer. She said, “Oh” and something else I didn’t understand.

Several times very close together she asked where we are. A few minutes later she said, “That looks familiar.” She was looking at the parking lot in front of B&N. Shortly after that, she looked at several murals with famous writers on the wall and said, “I remember when I took pictures of those. I remember looking up some of these men. They were very distinguished.”

After that, she looked across at me and said, “You aren’t going to leave me, are you?” I told her I would never think of leaving her. I told her I loved her and said, “You know, when we were dating, I thought I couldn’t love you any more than I did then. I was wrong. I love you much more now.” She said the same about me.

Another few minutes passed. She looked a little sad. I told her it looked like something was bothering her. She nodded. I asked if she was worried about the two of us. She said no. I asked if it were our children. She nodded again. Then I told her I didn’t think she needed to be worried about them, that they were getting along well. A few more minutes passed. She still looked like she was thinking about something that bothered her. I said, “Do you remember that old expression ‘A penny for your thoughts?’” She did. Then I said, “I don’t think you want to talk about it right now.” She nodded. I told her I could accept that and let it go.

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Not Quite Herself Yesterday

When I got home yesterday afternoon, I was eager to see how things had gone with the sitter. Kate seemed so disoriented that I hated to leave her. I left a DVD of Les Miserables for Mary to use if they wanted to watch it. They did watch it, at least Mary did. She said that Kate watched a while and then took a nap. They had just returned to the family room from our bedroom before I arrived. Mary said that Kate seemed to enjoy it before deciding to rest.

After Mary left, Kate said she was glad to see me and then asked my name and her name. Then she asked if we had children. When I said yes, she wanted me to tell her about them. We continued the discussion as we drove to dinner. I mentioned something about our grandchildren. When I told her their ages, she was floored.

We Apart from asking questions about us and our family, she was rather subdued today. She didn’t say much at dinner nor after we got home. The DVD of Les Miserables was still in the player, so I backed it up and played the last fifteen minutes for her. She continued working on her iPad without showing much emotion. I have tried to be very upbeat with her, and she has responded momentarily. It didn’t last, however.

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A Nice Day, But More Confusion

Kate surprised me by getting up early yesterday. She has always been slow to wake up, but I notice more confusion upon waking now. I walked in while she was brushing her teeth. Her first words to me were, “Who are you?” I gave her my name. Then she said, “What’s my name?” When I told her, she said, “You got it.” Then I wasn’t sure if she was just playing with me or if she really didn’t remember her name.

I think her confusion is why it takes her so long to get ready in the morning. Just taking a shower (usually short) and getting dressed sometimes takes over an hour. It often takes her longer to dry off after a shower than to take it. Since I am selecting her clothes, that doesn’t require much time except when she decides to wear something other than what I have chosen. The difficult part is getting the clothes on the right way. In the morning, I usually let her do that on her own. At night, however, I am usually with her when she undresses and puts on her night gown. It is not unusual for her to ask for my help. I see how challenging that is. That leads me to imagine greater difficulty getting fully dressed. I have started checking on her when she is getting dressed and ask if she would like my help. Sometimes she says she would. Most of the time, she likes me to leave her alone to take care of it.

Because Kate was up early, we got to Panera for the second day in a row. We were a little late, however, to see many people we know. Only two of the group from the Catholic church were there. They told us they had had a big crowd that morning.

At lunch, I said something that I wish I hadn’t. Our server asked us if we had done anything special during the week. At first, I said no. then I said, “Well, we watched Les Misérables for the seventh time in about seven weeks.” Kate was surprised. After the server left, she asked, “Did we really watch it seven times?” I told her we had. Then she said, “How could I forget that?” I said, “I don’t know.” Nothing more was said, and I saw no sign of any lingering concern on her part. I do wish I hadn’t said that. I don’t like to do anything that might cause her any additional anguish.

During our meal, Kate said she was tired. I thought that she might rest when we got home, but she didn’t. We spent the afternoon there. Late in the afternoon, we called our oldest grandson, Brian, who was 20 yesterday. Before we placed the call, Kate said, “I’ll just let you talk to him.” I don’t ever recall her saying anything like that before. I suspect it is another reflection of her insecurity. She is quite aware that her memory is poor. It does make conversation more difficult for her. We had a nice conversation with him and then talked with our granddaughter as well.

After the called ended, I asked if she would like to go to Barnes & Noble. She said, “What would we do there?” I told her she could work on her iPad. She didn’t want to go. Now that I reflect on it, I suspect she had forgotten that we normally go there to pass time in the afternoon. She seemed a little bored, and I thought it would be good to get out of the house. Instead we remained at home for another 45 minutes and then had an early dinner.

She wasn’t as chatty at dinner. She didn’t even ask my name or where we were. She was also little confused at home. She is clearly getting mixed up on the rooms and where she is to go. The previous night we had finished most of Les Miserables. I put it on and backed up about 45 minutes that we had watched earlier. Once again, she was enraptured right away. When it was over, we were off to bed. It was a little earlier than usual, but I thought that might help in getting her up this morning.

Just before 7:00 this morning, I heard her and went to the bedroom. She had just come out of the bathroom. I asked if she needed anything. She said she didn’t know. Then she said, “I think I’m supposed to go someplace.” I told her I couldn’t think of anything. She said, “I think it was to get my hair done.” I told her that wouldn’t be until next week and that it wasn’t yet 7:00, so she could rest a little more. About thirty minutes ago, I started some music. She hadn’t stirred, so I sat down on the bed. She looked up, and I told her I would like to take her to lunch. She said, “Okay.” I went back again at 10:35. She was awake but still in bed. I told her again that I would like to take her to lunch. She said she would like that. Then I said, “Of course, you would have to get up.” She said, “What will I wear?” I pointed to the clothes I had put on the chair beside her bed. I told her I had the shower all ready for her and pointed in the direction of our bathroom. She looked puzzled and said, “There?” I said yes. She didn’t look like she believed that was the bathroom. I told her to come with me, and I would show her. She got up and must now be in the shower. We’re running a little late, but we will make it. I’ll probably ask Anita to meet us at Panera.

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After Dinner Last Night

Kate had gone to brush her teeth after returning home from dinner last night. I took the clothes out of the dryer. In a minute, I heard her call to me. When I reached her, she was in the bathroom and said, “I like this place where we’re staying. It’s so spacious and attractive.” I said, “Yes, it is.” I didn’t say anything about its being our home.

A little bit later she took a seat in the family room. She looked out to the back yard and said, “This is a nice place. Look at the trees. They’re so beautiful.” I agreed, of course. Once again, I didn’t say anything to suggest that she was confused.

Before going to bed, Kate went to a bathroom off the guest room next to our bedroom. She seemed to take an unusually long time. Then I heard her call my name. When I answered, she said, “Where are you?” I said, “In our bedroom.” She said something that made me realize that she didn’t know where that was.  I said, “I’m right here.” Then I walked to the hallway where she was standing. It wasn’t until she saw me that she knew where to go. I wonder how long she had been looking for me.

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Last Night and This Morning

I was glad to see Kate get to bed a little earlier last night (9:00). That is something I am trying to encourage as a way of getting her to wake up earlier in the morning. I joined her about 45 minutes later. The other day, she told me the Russian choral music I like was beautiful. That and the fact that she was still awake led me to play that album as we went to sleep. It is very relaxing. I often play it while I meditate. I don’t know how long it was before we were asleep. I know that we only heard a portion of the album and that Kate mentioned several times how beautiful the music was.

This morning Kate gently opened my closet door where I was getting dressed. She was a bit groggy as she usually is when she gets up. She was looking for the bathroom. This is the first time I have been aware of her not remembering where the bathroom is. Of course, I am usually in the kitchen when she gets out of bed, so I wouldn’t know. Anyway, she was very confused. She was still dressed in her night gown but carrying the top she had worn yesterday. She said something about getting dressed. I told her it was still early (6:30) and that she might want to go back to bed after using the toilet.

I wondered how long she would sleep. It wasn’t long until I knew. She was up about 8:30. She had already taken her shower when I asked if I could help her. She told me I could get her something to wear. I put her clothes on the bed and showed her where they were and left her to get dressed. She was ready to go about 9:45 wearing exactly what I had picked out except for the shoes and socks. I considered that a small victory.

She has been in an unusually good humor this morning. As we drove away from the house, she said, “You’re a good guy. And you’re a good husband.” The she added, “What is your name?” When I told her, she said, “I knew that.” Then she asked my full name. I said, “Richard Lee Creighton.” She started to repeat it. Then she asked me to tell her again. When we arrived at Panera a few minutes later, she said, “Richard Lee Creighton.” She was beaming. We’re off to a good start.

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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.

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Confusion at Dinner

Tonight at dinner Kate said, “Where are we staying tonight?” I told her we were staying in our very own home that wasn’t far from the restaurant. I could tell by the question that she must have thought we were out of town. A little later, I asked our sitter for something. After that, she said, “I like traveling with you. Do you know why?” I said, “No, why?” She said, “Because your nice . . .” She couldn’t think of how to say what she wanted. I said, “Do you mean nice to the people who serve us?” She said, “Yes.” Once again, it sounded like she thought we were out of town. As we drove away from the restaurant, she said, “Exactly (with emphasis on that word) where are we now?” I told her we were in Knoxville and going to our home that was only a few minutes away. She seemed to accept that, but before we got home she said something else that made me think she was thinking we were not in Knoxville. I just don’t remember what it was.

This is not an unusual occurrence. As I reflected on it, it didn’t seem so strange at all. If she can’t remember where she is, every place can seem like we are some other place than home. For some reason that had never struck me before. This becomes just another example of how important one’s memory is.

Earlier we had been talking about our parents. I commented that I wished we had asked her mother and father to tell us what their parents were like as they were growing up. At our younger ages, we never thought of asking that. Now all we know about them is biographical information – where and when they were born, when they married and died, etc. We really don’t know a thing about their personalities and what they were like as parents. At some point, I mentioned something about her mother’s having married her father. She looked startled. She said, “My mother married my father?” I told her they were married in 1936 and asked, “Are you surprised?” She definitely was.

We had a very pleasant meal and are enjoying a little music and relaxation before adjourning to the bedroom to watch a portion of Sound of Music. Before we sat down, she was looking for her iPad. I knew it had been on the floorboard of the car on the driver’s side. Even though I was sure that I had come in with it, I went out to check. It wasn’t there. That confirmed that it must be in the house. I took a quick look around and didn’t find it. I told her I would use the “Find My iPhone” app to locate it. It frequently comes in handy. I got my iPad and walked from the kitchen into the family room. Kate was just walking into the family room from one of the bedrooms. I was focusing on the app and pressed the button to sound the missing iPad. It sounded immediately. It was in Kate’s arms. She had obviously forgotten that it was lost and I was trying to locate it.

Even with the confusion, we are getting along at the moment as if none of this confusion had occurred. It’s just an ordinary day.