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Getting Lost is Commonplace

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.

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Kate Is Discouraged

Last Thursday was a painful day. I could tell Kate was discouraged. That evening we looked at a photo album of her parents. We both enjoyed reminiscing. When we got in bed, she said, “This is the best I have felt all day.”

Friday night at the theater, she asked for cough drops. I gave her 2 and asked where she was going to put them. At intermission she couldn’t find them. She finally found them in her purse. She said, “Welcome to my day.”

We arrived in Houston last night  to spend Thanksgiving with our son and his family. She had forgotten her toothbrush. I got one from front desk this morning. The next morning she found the one she had. She said, “Honestly, Richard.”

I hear people say when talking about someone with dementia, “At least she doesn’t know.” I am sure that is true in the latter stages of the illness, but I know that many people with dementia do know that something is wrong.

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Frustrations of Everyday Life

Tuesday was a bad day. I mean in the sense that Kate felt depressed about her forgetfulness. To start the day, I told her to watch the dishes as she took them out of the cabinets because I noted that when I emptied the dishwasher, there was at least one dirty glass. She felt bad knowing that she had put something dirty in with the clean dishes. I sensed immediately that she was hurt and tried not to make a big deal of it.

Shortly thereafter we took her car to Firestone to get a new tire because one of hers had gone out the day before. The man at Firestone noted that the wheel rims around the tire had been scraped and said we could blame that on me. Of course, she knew he was really talking about her. After leaving Firestone, I told her that we couldn’t have lunch together because I was planning to go see Dad at noon instead of late afternoon as I usually do. I was doing this because we were planning to go to a 5:30 movie at the Olympia. I could see that she was depressed; so before leaving for the office, I told her I had changed my mind and that we could have lunch together and suggested Applebee’s.

The final blow came before we went to the movie. She came home with her laptop that had been repaired by the computer store and told me that she dropped it. She said, “I cause most of my own problems.”

We went to the movie, a documentary about Bill Cunningham a longtime photographer with the NY Times. She and I enjoyed it and then went to a light dinner at Mojito’s. That made the day end on a good note.

On another front, Dad was more alert on Tuesday and Wednesday afternoons, especially yesterday. The invitations to his 98th birthday party were being delivered to many folks yesterday, and I took his invitation to him. He was like a child – very pleased and showed it to a few people at dinner.

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Challenges of Everyday Life

When I arrived home from visiting Dad last night, Kate was on the phone with a person from tech support for the software that she and Ken are using for the the family album. When she finished, she seemed especially frustrated and said that she would be glad when this album is finished. Then we went to Chipotles for dinner. I commented on her frustration and asked if she had been able to recover a file that she had lost. She had not. In an effort to understand and possibly help her, I asked what she had tried to locate the file. She said she didn’t want to talk about it. This has become a very common pattern. She doesn’t understand what she is doing and can’t remember things she has done; so she is unable to communicate them to me which makes her more frustrated. I apologized for asking and said that I understood it was a problem for her, but I found myself reflexively trying to solve the problem.

All of this is back to what I wanted to say today. She finally said this had been a particularly depressing week. When I asked if there was anything particular that had happened, she just said that her brain was just not working the way it should. This conversation made me recall my mother’s frustration in the early stages of her AD when she would say, “I don’t know what’s happening to me. I just can’t remember anything anymore.” In the early stages people with AD know there is a problem and are frustrated. It is only in later stages when they are not bothered. I hope that is a long way off for Kate because when that point arrives, she will be different in other ways that she does not want (i.e., more dependent, less in touch, more obviously suffering from AD).

We have still not told anyone of her diagnosis and don’t intend to do so until some undefined later point. That will probably come when it is beginning to become more obvious to others that something is wrong.

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More of My Own Frustration

Yesterday I had another of those experiences in which I got frustrated with Kate. We planned to go to a movie at 5:30 yesterday afternoon. For that reason I got out to see Dad a little on the earlier side and left Kate at my office where she was working on her photo albums. I let her know that I would come back to pick her up at 5:10 so that we could make the 5:30 movie. Knowing that she doesn’t remember time very well, I called her when I was close to the office and told her where I was so that she could be ready. She asked me to call her again when I got closer which I didn’t do because I was already practically there. When I arrived (5:09), I called her from the car to let her know I was there. She said she would close up her computer and be right out. It’s not that she took a long time, but it does take a few minutes for the computer to shut down and then for her to get her things together. When she got in the car, I said something about her not being ready and then said what I wish I could take back, “You’re hopeless.” Now I am suffering guilt for not being more understanding.

Recently I have become more aware of her loss of short-term memory. Two or three times in the past few months, she has completely forgotten something we had talked about the night before. I don’t simply mean she had forgotten the facts or details; she didn’t even recall our having a conversation.

She continues to misplace her phone, keys, glasses, etc. I would like to get her an iPad because she has had such problems with her computer; however, I am concerned that she will leave it some place.