Kate came downstairs just before 9:00 this morning. She had some yogurt and juice. Then she went back upstairs to rest a bit before we went to a local coffee shop where we often go in the morning while we are in Memphis. She came back down before 10:30, and we left. While there, she was sleepy and put her head down to rest. It seemed a little early for lunch; so I encouraged her to hold on 15 minutes or so which she did. Then we had a nice lunch at a pizza place by the waterfront. We had a nice lunch. She continued to feel a little tired up until our meal arrived. After eating, Kate said she wanted to go to the rest room. I pointed to the area where it is located. She gave me a scowl indicating she didn’t need my help. I watched as she went in that direction. When she got near, she looked at a sign beside a door. I believe it was the sign for the men’s room. She then turned and was out of sight, but I know the rest room was down that way. When she came back she apparently didn’t see me in the booth where we were eating. She walked right by and spoke with a family with a small child. Then she went toward the front of the restaurant. I finished taking care of the check. When I finished, I got up and saw her standing at the reception stand at the front of the restaurant. Then we walked out. I am sure she lost me and realized the best place was to wait at the front. She was right.
As we drove home, she closed her eyes and rested. When we got back, I told her she would have plenty of time to rest. We came in, and she walked with her iPad into the living room and sat down in a chair. I got my computer and sat with it in a chair near her. In a few minutes, she asked, “Is it all right if I go upstairs to rest.” I told her that would be fine. Then she said, “What if I want to go to sleep?” I told her again that it would be fine. She is so childlike when she does this. It doesn’t happen often, but it sounds as though she is really seeking my permission. I wonder if she does this because she can’t remember plans that we might have coming up and is making sure that her rest doesn’t interfere with whatever is on our agenda.
Several things have happened since my last post. I don’t have much time right now, but I would like to jot down some events that I may come back to later. The first involves the neighborhood association newsletter. This is something she started working on early last fall. We just got the printed newsletter back from Staples. A week ago Friday or Saturday, she asked for my help with two things. The first was to get her newsletter out. The second was to help her take care of her obligations for her grant applicants for PEO. I told her I would do so. She had a terrible time both comprehending and remembering what it is she is to do. She asked me to listen in on a phone conversation with the woman who chairs the grants committee so that I would know what she is to do. We did that. Then she got confused again and had to call her back another time. We got it straightened out. She has to write two letters of recommendation. She’s already done one and still needs to do another.
On Thursday, I reminded her that she had an appointment to get her hair done. Although I had reminded her several times, it slipped her mind. She left in the car. I got a call a short time later. She couldn’t remember exactly where the hairdresser’s salon is located. I talked her through it, and she finally recognized where she was going. This reinforced our intention to get her to use the GPS when she is going places. We both agreed that I would enter a number of places into the GPS to make it easier for her each time she needs to go someplace. I used it today to help her get to a neighbor’s house. It looks like it is not as user-friendly as she needs; so I will look for something simpler.
All these things tell me that a year from now she is bound to be in a situation where people begin to recognize her condition. I will be especially interested in the children when we are together next month.
Two days ago on Wednesday, we had another unpleasant experience. Dad was to receive his 65-year pin and certificate from the Masonic lodge. They went to Mountain Valley to present it. We were scheduled to meet at 3:00 pm. I left the house before Kate in order to get Dad dressed for the occasion. As I was driving out of the driveway, I realized it had been a while since she had been to Mountain Valley. I called her to make sure she knew how to get there. I gave her instructions. While Dad and I were waiting for her and the Masons, I received a call from her. She was lost though pretty close. I gave her instructions again. When she didn’t show up on time, we went ahead with the ceremony. After the Masons left, I called her and got no answer. I called several times. I even texted her to call me. She finally called me. This was now about 3:30 or later. She was located further away than when we spoke earlier. I told her to wait for me, and I would get her.
I got there and asked her to follow me back to Mountain Valley. I also set the address in her GPS but didn’t realize the sound was off. Just before getting to back to Life Care, I made a right turn. There was one car in between us. She didn’t see me turn. I called and called her but got no answer. It turned out that she had put her purse with her phone in my car thinking that she would drive back with me instead of following me. (I don’t know what she thought about how we would get her car back.) Finally she called me from a phone at a car wash that was about 2/10 of a mile from where I was waiting at a gas station. I told her to stay put and I would walk to her and drive her in her car back to where I was. I did so and then she followed me back to Dad’s where we visited with him while he ate his dinner. When we left, she was feeling quite low. I told her I was going to take her to dinner at Hathaway’s, something we do frequently on Wednesday nights. She was pleased. We had a nice evening together, but it was a frustrating afternoon for both of us.
The experience makes me concerned about her driving anywhere. She can get lost at any time. She has resolved to start using the GPS more regularly, but I am worried she will not be able to remember how to use it. This is just a small sign of what lies ahead. It’s going to be a rough road.
The number of things that are an issue now make me uneasy about travel plans. We have wanted to go to New Zealand and to the Baltic States and Russia. I have been looking at Overseas Adventure Travel (OAT) for these trips , New Zealand in January or February 2014 and the another in the Fall 2014. I am beginning to think that another OAT trip may be too busy and require too much for me in terms of being ready to go for breakfast, for the bus, etc.
Kate’s functioning continues to deteriorate although I still think most people would never notice. Twice since coming back from our trip she has gotten lost. The first was on the way to church, a place to which she has driven since 1983. This past Friday she was later arriving home than I thought she should be. She had gone to Ellen’s to deliver some food for them. I decided she and Ellen were having a nice visit. When she came back, I asked about her being so late. She said she had gotten lost. She didn’t want to talk about it. This is a common pattern after she has done something frustrating. A little while after something has happened, I occasionally will ask, and she will tell me what happened though I don’t belabor things.
Short-term memory is increasingly a problem. For example, last night at the symphony concert I told her we would be going to a fund-raiser for the orchestra. At the end of the concert she spoke with someone who asked if we were coming, and she told them we were not. When I told her we were going, she didn’t remember my telling her the first time. This kind of thing happens all day long.
The “Fall” newsletter for the neighborhood association still isn’t out. On Friday she asked me to get her to finish it yesterday. I tried to get this done, but failed although she did work on it a little.
Similarly, she hasn’t finished her collage of pictures from our trip to South America although she was virtually finished weeks ago.
She continues to depend on me and actually hands off things to me. For example, the past two days she has handed me her can of V8 to open for her. Little things like this can be frustrating to her. She said that she didn’t want to break her nails.
All these things have made me more certain that our trip to New Zealand will be on our own.
The overriding response to AD is sadness, anger, depression, etc. – all things that we think of as negative. We’ve had our share of those things right from the beginning. I still remember the tears that came to my eyes when the doctor told Kate the diagnosis. Much of what I have reported involves the negative even though it is simply a report of something she has done that illustrates her condition.
On the other hand, we experience funny moments, or perhaps I should say, we don’t always react with sadness or depression. For example, yesterday Kate called me from her GYN’s office to say that she was through. We decided to meet at Bruegger’‘s for lunch. Her GYN’s office is on the same street as Bruegger’s. I had worried about Kate’s getting to her doctor’s office since she had not been in a good while. I had offered to lead the way for her. She declined and was able to get there without any problem. After we hung up, I thought I should have asked if she could get to Bruegger’s without any trouble. I didn’t; however, since we go there so regularly and it is on the same street as her doctor’s office. Nevertheless, I did worry a little and thought I might hear from her. I left home to meet her at the restaurant and noticed that she was not there when I arrived. I had a bad feeling but went in a started placing our order. While I was doing so, I got a call from her. She was frustrated. I asked where she was. She told me she was downtown near UT. That meant that she not only did not simply drive on Taylor to the restaurant but that she had gone the opposite direction from the restaurant.
Anyway, I guided her over the phone, and she arrived at the restaurant 10 minutes later. When she arrived, she laughed about what she had done. This is not an uncommon reaction when she does something like this. I told her I was glad she could laugh about it. She then told me she had seen Ellen that morning. Ellen asked when we were going to South America. When she gave her answer (which she wouldn’t even tell me), Ellen said, “Oh, that’s right away.” Then she realized she had given the wrong answer. This is a very common occurrence. She has no idea when she has appointments, when or where we are going, etc. She and my dad both forget times and dates within moments of my telling them. They simply don’t register.
My point here is that sometimes we just laugh. I find that is good for both of us. We have enough of the more negative reactions. I am wondering what how we will react as time passes and things become more serious.
In an earlier post I mentioned that it’s the decline in Kate’s short-term memory that seems to be most obvious change that is occurring. That is what will finally cause her friends and family to suspect dementia. Here are several recent examples.
1. I just arrived home (10:20) from getting to the hospital at 4:00 this morning after Dad took a fall around 3:00 a.m. She was working on something for PEO and didn’t even ask about Dad. I think she remembered that he had had a fall, but I dont think it was sufficiently present in her mind to automatically ask how he was doing.
2. When I drove up to the house, I saw her glass of iced tea at the curb in front of the house near the mailbox. No doubt she had been doing some pruning around the shrubs and put her tea down. Then she finished without remembering that she had put it down.
3. Last night she said she had lost the power cord to her computer. I walked into her office where I had seen her using the computer yesterday afternoon. The power cord was right by the chair. This is an interesting symptom because it is not just forgetting where she left the cord or where she last used it, but she also has trouble focusing on things when she is looking for them. I am remembering my recent participation in a virtual dementia experience in which our eyesight was diminished with dark light and goggles. I simply didn’t see things that I would have seen otherwise.
4. On Monday of this week I did a little trimming of some shrubs that Kate had asked me to trim. As I was doing so, I found some clippers in the space between the shrubs and the house. She had no doubt been using them, put them down, and then forgot them.
5. One morning this week I left for the office while Kate was out on a walk with a neighbor. As I got close to our street, I saw Kate walking by herself in the direction of our street. Later I asked her about that. She gave me a funny look that made me think she didn’t want me to ask. (Incidentally, frequently she doesn’t want me to ask her about something and has developed a short hand way of communicating that. She says DNA (Do Not Ask.). Then she explained that she and the neighbor had finished walking and as she was returning to the house she walked by our street which is almost a half mile from where I saw her. Because she has always been geographically challenged, I fear that this is one of those things that is going to get us in trouble sometime. We have now had a number of mini-crises surrounding this. The first was in Birmingham when she and a friend had gone to a shower for niece. She has had several similar experiences when going to PEO. One of the most dramatic was when we were going to meet our son, Kevin, and his family at the airport a couple of years ago. She was supposed to meet us there. When she hadn’t arrived in a reasonably length of time, I called her. She was in downtown Knoxville and had no idea how to get to the airport. All of us packed into my car and met her so that she could follow us home.
Today was Dad’s Kiwanis Club luncheon. I assumed that Kate would go with me to pick him up. I also knew that would require more of her time which is precious since she is trying to get ready for my Sunday school class party at the church tomorrow at noon. She also has her PEO Christmas dinner at our house on Saturday night. She wanted us to go in separate cars. I hesitated knowing that she has both a time management problem (she runs late) and that she has no sense of direction. She assured me that she knew how to get there. I consented and told her we were to gather at 11:30 with the meal to start at noon. She had not arrived when the meal started. I slipped out at 12:15-12:30 and called her. She said she thought she was almost there. We hung up. Then she didn’t arrive until after 12:30. By that time we had finished our salads and the entrée had been served at our table. She indicated she had asked three different people for directions and that they had been very helpful.
When I got back home, she was working on her family album. She told me that she had ordered the meal for her PEO dinner on Saturday. She said that she had ordered lasagna and a chicken dish over spinach pasta. I reminded her that we had decided to have just spinach ravioli. She asked me to call back and handle the transaction.
Monday night was the December meeting of our music club. I was putting my shoes on in our bedroom when she walked in, and I said something about her clothes. She hadn’t realized I was in the bedroom and was quite startled when I spoke to her. I started to apologize and she broke into tears and didn’t want to talk about it. These are two common patterns. First, she is very skittish. I try to be very careful about announcing when I come in the house to prevent scaring her. The second pattern is her not wanting to discuss anything when I want to discuss the situation. She just wants to drop it.
Yesterday we had lunch together at Applebee’s. When we left, Kate said she was going to do a little shopping. About 3:15, I was about to walk out the office door when I received a call from Kate. She told me she couldn’t find her car. I asked where she was. She told me, and I told her I would be right there. When I got there, we decided it best for her to get in the car with me and for us to drive around to find the car. I asked her where she had been. That led to my driving along the street where she had been shopping. As we drove, I saw her car in a parking lot. I turned around and went back. She had absolutely no recollection of having left the car there even though that would be the most obvious place to park. Before we went our separate ways, I suggested that in the future she might try using her phone to take a picture of where she parks to help her find her car. That is something I do when I park in a parking garage. Of course, I realize in order for that to work, she would need to remember to take a picture.
Last night we talked about her experience and very briefly about how she was feeling. She acknowledged feeling discouraged and angry. She feels that she is too young to face this and that her lifespan has been unfairly shortened.
We are still at Chautauqua, and I sense this has been a tough week for Kate. She told me a couple of days ago that she is a basket case. After I gave her a second toothbrush yesterday (she failed to bring one with her, and I had given her an extra that I carry for that purpose), she also made a remark that a friend whose husband died of AD, told her it only gets worse.
She continues to work on fer family album, a project that should have been completed long ago. To her credit, she is also editing some of the work that her brother had done; however, I am confident that given her mental state, she is taking 3-4 times as long as she should to complete everything.
I have also noticed that she has seemed more needy in the sense of wanting to be close. We were to meet in the Amphitheater for the morning lecture yesterday. I never saw her come in, and she did not see me. When it was over, I waited for her to come out. When I didn’t see her I came back to our room. She finally arrived and was panicked because she had not been able to find me. I am thinking this is one of the early signs of fearing to be out of my sight.