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Little Changes

Among the changes in Kate’s recent behavior, I have noticed changes in her mood. I had previously mentioned that she had had several days during which she was in an especially good mood and very cooperative. She seemed to accept just about any of my suggestions. Then she had a day when she was quite irritable. That didn’t last long, and we returned to our usual habits of a mixture of more neutral behavior with a few irritable moments when I make suggestions about things to wear or offer my hand when she is going up or down stairs or a curb. We had a good day in Asheville on Sunday. Then yesterday morning she was irritable without any precipitating action on my part. We had a lunch scheduled with several people from our bank. She was far from excited about that. She seemed to enjoy herself and chimed in several times to make fun of my talkativeness. This is something I didn’t mind at all. It was fun to see, and I think our friends at the bank felt the same way. It was, however, something she would not have done before her Alzheimer’s. It was one of those times that her brother refers to as speaking with his “filter turned off.” I’ve learned that he means that he is insensitive to the possible impropriety of his comments.

This morning as she was getting out of bed she asked me if she should make up the bed. I don’t ever recall her asking this before. The only thing I can relate it to is that she knows our housekeeper comes once a week and washes the sheets. On those days, she did not make up the bed. Over the past 2-3 years, she hasn’t regularly made up the bed on any day. This is worthy of comment although I don’t believe I have mentioned it before. Her mother had taught her to always make up the bed. She has done so throughout our marriage until Alzheimer’s. Another connection to asking me this question is that asking my advice, permission, or confirmation is becoming another of those little changes that are taking place. This one just surprised me.

When we returned from Panera this morning, she asked me if she should wear a cap when she went outside to pull leaves. This was the first time she has asked this. It is an overcast day. Perhaps, she was really asking herself if she needed a cap.

When we got home from lunch, she asked me if she could use the clippers while she was working outside. As always, I told her she could.

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Symptoms

We drove to Asheville for lunch, a play, and dinner. We had a nice lunch and Jenny, who works the front desk, gave us an upgrade on our room. A few minutes ago we got back from the play. Before the show began, I got Kate a bottle of water that she took with her into the theater. At intermission, the man in front of her said something to her about squeezing the bottle and making noise during the first act. She said she didn’t squeeze it. He said, rather sternly, “Yes, you did.” She said she was sorry. A few minutes before the second act began I leaned down to him and told him that she has Alzheimer’s and that it was my fault that she had made the noise and that I just didn’t hear it (which was true). At the end of the performance, Kate tapped him on the shoulder and said something about her mother’s having gone to TCU. Then she asked me what her mother’s maiden name was. It was a good thing I had told the man about her diagnosis. He smiled and asked her if she enjoyed the performance. She told him she had. Then we moved on.

As we were walking back to the hotel, she said, “Where are we?” I said, “Do you mean what city are we in?” She nodded. I told her Asheville. She just said, “Oh.”

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Asking Permission

Kate’s requesting permission to work in the yard and specific places in the yard is becoming a regular pattern. It also extends to things like asking if she should take or leave the glass with her iced tea at the restaurant as she did tonight or take it with her. It has been a while, but on two different occasions, she has started to walk away with her glass from our favorite Mexican restaurant. One time the owner caught her and asked if she would like to have a take away glass. The other time I caught her before anyone noticed.

She also continues to make requests without verbalizing them. For example, with her glass of tea tonight, she just lifted it up and brought it to her chest with her face making the gesture of a question. Yesterday for the first time, she did this with someone else. She walked into the examination room with me at my ophthalmologist’s. She held up her iPad and gestured to the assistant who brought us to the room. The assistant didn’t know what she was asking. I told her.

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Something New and Disturbing

A few minutes ago I left Kate in the bedroom working on her iPad while I went to the kitchen to check on something. As I left, I said, “I’m going to get ready for a shower in a few minutes.” When I came back, she had put the iPad on the ottoman of her chair and was watching the news on TV. She also had an angry look on her face. She said, “You told me to put that thing (the iPad) down and watch the news for a change.” I told her I hadn’t said that. She said, “Yes, you did. Don’t deny it.” I leaned down by chair and put my arm around her shoulder. I decided arguing wouldn’t get us anywhere. I told her I loved her and that she didn’t need to watch the news. She sat quietly fuming for a minute. Then she said, “I just get so tired of being so dependent on you. I can’t go anywhere or do anything without you. Here I am in my 70s and I’m treated like a child.” I repeated that I love her and told her I knew it was hard.” Then I asked if she would like to watch Golden Girls. She said, “I don’t care.” I turned off the news and now Golden Girls is playing. She is working on her iPad again.

Although she has talked any number of times about her not liking to be dependent on me, this is the first time she ever blamed me or took it out on me. I realize that she is likely to have forgotten this tomorrow, but I can’t help wondering if this signals a change in her outlook toward me. It comes just after a period of several days during which she has been unusually cheerful and cooperative. What a dramatic change she has made tonight.

The drama is now over. She just got up from her chair and said, “Well, Babe.” She didn’t sound angry at all. I asked if she were going to get something to wear to bed. She smiled and said she was. I told her I loved her, and she walked to her room. I hope she returns in the same state of mind in which she left.

Wow! This came at me from left field. To underscore how dramatic this was for me, this was the first time I have ever heard her express anger with me from the beginning of our marriage to now. She has expressed irritation frequently over the past few years, but this reaction was well beyond anything I have seen before. I am very glad that it has blown over and, hopefully, won’t return again.

When she returned from her room, she was just as pleasant as she has been for the past few days. It is as though the angry outburst never happened.

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Progress on In-home Care

This morning at Panera, Kate and I met with the social worker from the agency that is going to provide in-home care. I had arranged for the social worker to arrive after Kate so that we could make it appear to be a chance encounter. This worked beautifully. I saw her when I got up to get a cup of coffee and brought her back to the table where Kate was seated. I had left the seat across from Kate open for the social worker. I introduced Kate to her and told her that she and Marilyn had something in common. Then Marilyn explained that she had been the social worker at the primary care practice where Kate goes and where Kate’s mother and my parents had gone. That led into a very natural conversation. Marsha was with us about 30 minutes before leaving.

The agency that will provide the care requires an interview the person who will receive care before they assign a caregiver. At first, I had wondered how to explain this to Kate without saying that I was getting ready to bring in someone to care for her. Then I thought it would be natural for us to have this kind of meeting at Panera. It was like so many others we have there. It turned out to be a good idea.

The next step, of course, is to explain the presence of a caregiver. I have been struggling with this, but Kate has been increasingly accepting of whatever I do. I think that I may be able to tell her truthfully that I don’t like to leave her alone and thought that she might like to have someone with her who could be a companion and also help her with anything she needs. I may mention some help organizing clothes. It would be wonderful if she and Kate could work together to sort through the things that she is not likely to wear any more and organize her closet with just those things that she will wear. We are scheduled to have the first visit on September 6 after Labor Day. That gives me time to talk with the social worker again and to think through the best way to make this transition.

Although I am concentrating on making this go well for Kate, I am also mindful of the transition for me. This is a big step symbolically. In addition, I have enjoyed and become adjusted to being her sole caregiver. That will be hard to sacrifice, especially since I am not doing this to relieve the stress of caregiving. It is more an effort to make me feel comfortable when I need to be away from the house. For example, this will enable me to continue going to the Y, to Rotary, the grocery etc. I am confident that she and I will adjust. It is just a big step.

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Being Cooperative

In my recent entries I have paid particular attention to ways in which Kate has declined. One thing that I haven’t mentioned directly is that she has been unusually cooperative with me over the past few days. It isn’t that she is normally uncooperative, but she has held on to her independence and has expressed resistance to many things that I have done to help her. That involves things like offering her my hand when she is walking up or down steps, selecting clothes for her, or telling her about stains on here clothes. It also involves things like letting her know when it is time to go some place or how much time we have until we leave or whether we have a lot of time or whether we need to hurry.

Recently, she has not expressed the same degree of resistance or irritation. I don’t mean that it has disappeared, but that it is very noticeable that she has been much more agreeable in the past few days. I can’t help wondering if this might not be another indicator of her decline, that she is acknowledging her dependence on me and letting me take charge. I will also say that I have been increasingly respectful of her desire for independence and wonder if my own actions have been less threatening to her sense of independence.

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How am I Feeling?

Observing Kate’s decline over the past few months and finally taking steps to get in-home care for her has left me feeling a bit sad. It also makes me think about what other caregivers have said about “grieving” for their loved one long before their death. I can see (feel) exactly what they mean. Recognizing the need for in-home care is not really the beginning. For much of the time since her diagnosis, I have come to understand that our lives together have been permanently changed. As all my entries in this journal convey, that hasn’t meant that we have not enjoyed life. I still maintain that these years have been the best of our marriage. That is because we have worked hard to make the most of the changes. We have lived to make each moment special. The reality is that our lives have changed continuously since the first signs of her illness 11 years ago.

Reaching the point of in-home care is a significant one symbolically. It signals a time when the severity of her illness requires more help. Although we will begin with minimal help, that is our first step toward full-time care. In the meantime, I plan to continue doing as much as we can socially. We will continue to go to Panera each morning. We will continue lunch with local friends. We will also visit our friends in Nashville. This Sunday we are going to Asheville for a show at one of their local theaters. Once again, we will stay at the Haywood Park Hotel, our home in Asheville since they opened. We have season tickets to the Bijou in Knoxville. We will try the Live in HD at The Met productions. I am a little guarded about those. We walked out at the first intermission of the last one.

That said, I can’t forget that we are approaching that chapter of Kate’s illness that I have not wanted to face. I am at a weak point emotionally, but I know that we will be able to cope with what lies ahead even if it is through lenses covered with tears.

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More Signs of Change

Following yesterday’s eclipse, Kate and I went to Barnes & Noble. This was unusual in that she worked steadily on her iPad for more than 2 hours before leaving for dinner. Just before 6:00, I asked if she would like to go to dinner. She said, “In a few minutes.” I waited another 15 minutes. She still wasn’t ready. Finally, at nearly 6:30, I told her I thought it was time for us to go. That is very unusual. It is rare that she wants to stay in one place that long.

We went to a nearby restaurant for dinner. As we got out of the car, Kate said she wanted to find the restroom. We met the hostess at the front who told us the table at which she would seat us. Then I walked Kate to the restroom since it was not easily spotted from the entrance or where we were to be seated. When I showed her the door to the restroom, I started to turn around. I was going to wait at out table and keep my eyes out for her when she exited. She very quickly asked me to stay right there. That is the first time she has ever done that. That is another indication of her own realization that she can have a hard time finding me.

When we got home, she wanted to pull leaves. As she has been doing lately, she asked if she could. Then she asked where she could work. Later I called her to come inside as it was getting dark. After she was inside, she asked, “Are we going to stay here tonight?” When I said yes, she said, “That’s what I thought.” It’s been a while since she has done this, but it has occurred periodically over the past couple of years.

In a few minutes, she called to me. She was in the middle bathroom. She showed me the clippers in her hand and then put them under the towels in the closet by the sink and asked if that were all right. I hesitated. Then I told her I might forget where they are and to give them to me so that I could put them in the laundry room or in the garage where we usually kept them. She accepted my suggestion and gave them to me. She has been especially cooperative today.

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Sad Moment, – Sundowners?

About an hour ago, Kate came in from outside where she had been pulling leaves since we got home from dinner. I met her in the laundry room, and she said, “What now?” I told her it was time to take a shower and get into her night clothes for bed. She accepted that and went to shower.

After quite a while, I went back to her room to make sure she remembered to put on her night clothes. When I got there, she was about to get dressed to go out. I told her I was just coming back to remind her to put on her night clothes. She thanked me for that and said she was about to put on her regular clothes. I left the room.

In a little while she came into the kitchen fully dressed with her iPad in her hand along with a book of crossword puzzles. She was ready to go out to Panera or Barnes & Noble. I reminded her she needed to put on her night clothes. She went back to her room.

I had sat down in my chair in our bedroom when she walked in fully dressed. Once again, I told her it was time for her night clothes.

She went back to her room. When she returned, she was carrying a night gown but still dressed. She said, “I can just put this on over . . .” (did not finish). I told her she should take off the clothes she was wearing and just wear the night gown, that she would get hot wearing both.

She left again. She came back without the nightgown but had put on a different top. I stood up, walked over to her and put my arms around her and told her how much I loved her. She hugged me tightly and started to cry. She quickly stopped herself. Then I said, “Wouldn’t you like me to get you a night gown?” She nodded. I went back to her room and got a night gown and brought it to her. When I gave her the gown, I said, “We take care of each other, don’t we?” She agreed. Then I took the clothes she had been wearing and hung them up in her closet.’

I am back in the bedroom now. She is working on her iPad. When I walked in, I said, “The way you are lying there you look like the subject for an artist to paint.” Then I said, “We have a good time, don’t we?” She agreed. I said, “We’ve had a good time; we are still having a good time; and we are going to have more good times.”

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New Patterns

I have previously noted on several occasions that Kate will ask me if she can pull leaves outside as we approach the house after being away from home. This started as something only occasional. It is now becoming a regular pattern. Normally, she asks, “Can I pull some leaves?” After I tell her she can, she frequently asks, “Can I use the clippers?” Often she doesn’t say the word for clippers. She just closes and opens her right hand. I know what she means and tell her it’s all right. After that, usually as we have pulled in the driveway or garage, she says either, “Where can I start?” or “Where do you want me to start?” or just “Front or back.?” I sometimes tell her she can start anywhere she wants. Sometimes I know that we will be going out soon and don’t want her to get so hot that she needs a shower. In those cases, I sometimes suggest she choose a shady spot or even point out a shady spot if I see one. Having settled on where she will start doesn’t mean that is what she does because her memory doesn’t permit her to remember. She seems to gravitate mostly to the two flower beds along the driveway or the flower beds in the front of the house.