| A real-time account of Dementia Caregiving

November 26, 2015January 20, 2018

Memphis: Alone Time

This morning Kate and I were awake at 7:15. I brought her some orange juice and a breakfast bar around 7:45 and told her the family was just now coming to the kitchen. She thought I was asking her to come on downstairs and asked, “I’ll be able to see them later, won’t I?” I told her yes. She remained in bed using her laptop. She remained there until close to 11:00. She came downstairs and started editing photos on her laptop. Sometime around noon, she went back upstairs. I just checked in on her and found that she was resting in bed.

It is interesting how much she enjoys being with everyone (I think), but how often she removes herself to rest. I am not sure whether this occurs because she is simply tired or because she isn’t interacting with everyone and gets bored or feels left out. For the most part, each person has been on his/her own today. Jesse has been busy the entire day preparing food for our Thanksgiving dinner. I have remained in the kitchen most of that time working on my iPad and talking with Jesse and Greg. Ron has been playing games on the TV (football, basketball and hockey). Randy has been upstairs almost the entire morning. He is downstairs right now working on his computer. It could be that Kate has simply gotten tired of working on photos. It may be taxing on her. It could also be that she is having a very low-key experience with the family since no one is giving her any special attention. Of course, she hasn’t taken any time in the kitchen except when Jesse gave her a slice of banana nut bread and some fresh blueberries and raspberries.

Yesterday she was hurt when we were with the Robinsons in Nashville. We had had a good visit. Near the time to leave, she broke into the conversation and said, “Wait a minute, the three of you have done all the talking. Let me say something.” When we got in the car, she seemed depressed. We didn’t chat about it, but she offered several comments. She mentioned something that I have noticed before but did not notice yesterday. She said Angie and Tom looked at me and addressed all or most of their comments to me. She also said that everybody (even Ellen, her best friend) does this. She said, “I am not dumb.” meaning that she has things to say and contribute to our discussions as much as everyone else. I apologized to her because I had not been sensitive to that and that I would try to direct more conversation her way. I really do believe that my own personality is such that I quickly engage in conversation with other people and don’t think as much about whether or not she is being included. This is something I need to work on. I might think that the behavior of the Robinsons is a result of their knowing that Kate has Alzheimer’s, but the same pattern appears to be true with other people who have no idea of her illness. It may have something to do with the kinds of comments that she makes. Often they don’t tie into anything that we are discussing at the moment. It could also be that there is so little that she can offer to many of our conversations that she is more retiring and gets ignored. At any rate, it is a problem and one that I hope I can offset but fear that this will become a more common pattern.

November 16, 2015January 17, 2018

Sad Moment

Yesterday morning shortly after I told Kate it was time to get ready for church, she came to me with an outfit and asked, “Is this all right?” This seems a simple enough question, but viewed in context, it is another sign of her decline. She has been and continues to want to be very independent. She often shows signs of resentment when I make suggestions about what she should wear. She does, periodically, ask my opinion. In this particular instance there was something about the way she asked the question that hit me. It sounded very childlike as though she had no idea of what to wear. I think the fact that she was preparing to dress for church which is such a routine event adds to my sense that she is changing.

As a caregiver, I have to be very sensitive about what to say, when to intervene, when to let her make her own decisions even when I know it may be different from what I believe is appropriate. I am trying very hard to minimize her boredom now. I am spending less time at the office so that I can be with her more. That permits such things as simply coming over to Panera Bread where we are right now. Here is an example.

Today I have a foundation lunch meeting that starts at 11:30. That means I need to get her lunch somewhat earlier than I would do typically when my Rotary club meets at 12:30. For that reason I decided to come home directly from my workout at the Y and take her to Panera where we could both work on our iPads and then get her lunch. Knowing that she often goes outside to work in the yard and that if she did this, we wouldn’t have much time together before I have to leave, I called from the Y to remind her that we were going to Panera. She had forgotten. When I got home, she was waiting in the driveway near the street. When she got in the car, she said, “I didn’t keep you waiting.” This led to a few comments related to her saying that I didn’t give her credit for anything. She then gave me commands as to how to get to Panera’s. She was mimicking the way I do with her. My point in telling the story is that I had simply tried to do something nice for her, but she hadn’t recognized that and, in fact, seemed a little put out with me.

During our time here, she said, “The Olive Tree. That is the name of the restaurant where we ate on Saturday with the Harringtons. She had asked me several times but couldn’t remember the name. Then she said, “Katherine.” That is Mark’s wife. That led to her repeating our address, my cell phone number, as well as the names of several high school friends. She was demonstrating that she still remembers things. This is another sign of her own recognition that she is getting more forgetful and is working hard to compensate (remember). That makes me sad too.

November 15, 2015January 17, 2018

Imagining Things

Last night as I was turning into Ruby Tuesday for dinner, I said to Kate, “Oh, I forgot to bring my $5 off coupon again.” She said with a bit of irritation, “Why don’t you keep it in the car.” Then she went on to say, “I’ve told you at least 3 times to do that. You don’t listen to me.” This led to a further exchange in which I said, “You don’t think I listen to you.” She said, “No, you don’t.” My point in bringing up this episode is that she has never suggested that I keep the coupon in the car. In fact, we have not really discussed this. The only prior mention occurred the last time we were here about 2 weeks ago when I also had forgotten the coupon.

Kate did not sleep well last night. At 2:30 this morning she mentioned that she couldn’t sleep. I know she was awake around 4:00 when I woke up again before falling asleep until 5:00. I think she was awake then. I got up at 6:00. She has rested a little since that time, but I really believe she lost a lot of sleep. I asked her a few minutes ago if she had been worried about something. She said she hadn’t and couldn’t figure out why she couldnt sleep.

November 14, 2015January 17, 2018

Time With Friends

Last night we went out for pizza. Kate told me she was thinking about telling Angela and Marvin Green about her Alzheimer’s. She said she wasn’t going to do this right away, but that she felt comfortable doing so with them. She indicated that she felt she could trust them to keep it to themselves.

Today we had lunch with Angie and Mark Harrington. About a month ago, we talked about going to lunch at one of their favorite restaurants, The Olive Tree. Last week Mark and I decided that today was the day to try it, and we did. After dropping the Harringtons off at their house, Kate said, “Weren’t you going to take me some place?” I said, “Lowe’s?” She then said yes. That led to my turning in the direction of Lowe’s.

As we were driving, I said something about how much we enjoyed the lunch with the Harringtons. She agreed. The she said, “I remembered having been there before. I didnt remembered until we walked in. Then I recognized it.” I said, “So you’ve been there before.” She said, “You were right. You told me we had been there, but I didn’t remember it.” The truth is that this is another Deja vu experience. Neither one of us had been there before.

November 13, 2015January 17, 2018

Moments of Frustration

On the whole I think I do pretty well adapting to the changes required by Kate’s Alzheimer’s, but one thing I have not been able to fully let go of is happening right now. We had been out to lunch with our church friends, Angela and Marvin Green. We came back to our house after eating and had a long chat. We always have a good time with them although we don’t get together that often.

After they left, Kate stayed outside to work in the yard. As usual, she didn’t change clothes. I am prone to protect my clothes and wouldn’t work outside in anything I valued. She doesn’t feel the same way. I don’t believe she was ever as sensitive (obsessive compulsive) about this as I am, but clearly the Alzheimer’s has meant she has little or no concern about soiling or damaging good clothes. On a few occasions (not many) I have said something to her about working in her good clothes. It never works; so I am holding off. She is seated on the ground digging in the flower beds. I don;t know what condition her slacks will be in, but I know that her work clothes look pretty soiled when she comes in. This is a little thing I know, but I feel the need to report it lest a reader think that I am more understanding than I really am.

November 12, 2015January 17, 2018

Diminished Observation

A number of times I have commented on the fact that Kate’s observation of things around her is impaired. She simply doesn’t notice things that are in front of her. This happens most often when there are a lot things in front of her. That makes it hard for her to see what it is she is looking for. I try to help by going to places around the house that I think from past experience are the likely places to find whatever she is looking for. Sometimes it works. Often it doesn’t.

Something more dramatic happened last week when we were returning from a meal at Chalupas, her favorite Mexican restaurant. As we were approached a stop light , I noticed flashing red lights. Because it was dark I couldn’t tell exactly what it was until I got to the intersection. Then I noticed that a firetruck was blocking the intersection. Someone was directing traffic to turn right toward town. As I turned, I noticed that two cars had collided. I made a comment. It turns out that Kate had not seen the firetruck or the accident scene itself. This is a case where multiple red lights were flashing, cars were backed up. I don’t know what could be more noticeable.

November 10, 2015January 17, 2018

Cleaning up

It has been a while since I have commented on the condition of Kate’s rooms (2 guest rooms and her office). I am glad to report that she has kept them in much better order in the past few months. That has changed in recent weeks when I believe she has been trying to arrange her clothes in some kind of order to make it easier for her to find what she wants. In the short term (and perhaps the long term as well) it is back to being about as messy as it ever was. The difference is that it appears to be directly related to her sorting her clothes in preparation to put them in her closets. Each room seems to change in that it gets cleaned up and then after a while, it returns to a similar disorderly condition. Yesterday her office looked pretty good. I went in there about an hour ago after my morning walk, and clothes were laid out on her bed. I asked if she wanted to go to Panera. She said she would but wanted to continue cleaning up. I decided to let her do that as long as she cares to. We can go to Panera anytime.

I don’t know why she has tried to get her house in order, but I take that as a good thing. The big problem is that it goes pretty quickly back to its disorderly state.

October 31, 2015January 17, 2018

Signs of Frustration. Mine not Hers.

First a little background. As long as 10 years ago, a neighbor down the street sent a message to everyone on our street asking us not to put our yard trash on the street until near the time of our weekly pick up on Thursday. Kate was initially offended by it but has tried to abide by the neighbor’s plea. In the past couple of years she has been especially rigid about it, not wanting to put the trash out until Thursday morning. I have never cared for this because it meant that we (either Kate or I) had to be the ones to get it out because the woman who cuts the grass and cleans up the flower beds wouldn’t be here early enough on Thursday and often comes on Tuesday or Wednesday, sometimes Friday. She came on Thursday morning this time after the trash men had already picked up. The leaves are beginning to fall, and the trash piled on the street was at least 12 feet long.

This is not a good week for this to occur because today is Halloween. We have a lot of trick-or-treaters. Kate wanted all the trash moved. I originally suggested that we leave it, but she was insistent. It is also something she didn’t forget. I never volunteered to move it, but she got the impression that I had said I would. After lunch today, she said she would meet me outside which I took to mean that we would work together to move the trash to the back of the house. When we got out there, she began raking up some trash that was in the yard. I started to load up the trash in an old garbage cart that I could roll to the back of the house. It turned out that she wanted me to put it in the flower bed on the side of the house. This is one of the areas that I have had our yard person cleaning up. To be more specific some of this trash has come out of the flower beds, and I didn’t like the idea of putting it back just after she had removed it two days ago. She said she would step aside, and I could put it wherever I wanted which I did.

She started picking leaves off the shrubs she does almost daily. As I was taking one load of trash to the back of the house I noticed that she had left some trash from the front flower bed on the sidewalk, a place she usually put trash. I suggested she could clean that up while I was moving the trash from the street. She seemed quite willing to do it. I saw her with a broom, and she was sweeping the front porch. It had looked pretty clean to me, but I thought she just wanted to start there and then move along the walkway to the driveway. Later I walked by and saw the trash was still on the walkway. It turns out that she had finished her work and gone in to take shower. I ended up cleaning up that trash too. At the time I felt like saying something to her but decided against it. I know that she didn’t realize what she had done (or not done). I simply didnt think there was anything to gain by saying something other than the personal satisfaction of telling her.

I relay this story to make sure that the reader knows that I do experience some frustration even when I accept what she has done or not done. It is also another example of how this disease can change normal interaction. There are many things like this that occur, but I try not to say anything at all.

Something else that bothered me. I changed clothes before going out to clean up the trash. She is not sensitive to this at all. She was dressed very nicely when we went to lunch. I commented on how nice she looked. She wore a beautiful garnet turtleneck sweater and a nice pair of black slacks. When she went to clean up, she wore those same clothes. At one point I saw her sitting on the edge of a flower bed where she was pulling weeds or something like that. She has so few clothes that are not soiled in any way that I hate to see her messing up the ones that are in good shape.

October 30, 2015January 17, 2018

More Signs of Insecurity and Withdrawal

Last night we attended a choral concert at First Presbyterian. After the concert. they held a reception that we attended. I noticed once again that Kate would just walk away when I was talking with someone that both of us know. As I have noted before, I think this comes from a lessening ability to talk about many things, but I also believe it happens because she recognizes fewer people. She seems to walk away as an escape. At one point while I was talking with someone about the flooding at his house during our recent storm, she took a seat in a chair by herself. Fortunately, someone came over to her and they engaged in a conversation. Then it was time for us to go. As we left, Kate asked who that was she had been talking to. She did recognize her as a friend of Ellen’s. I suspect the person may have mentioned Ellen in the conversation. Then as we walked out of the church, she put her arm around my waist and said, “I need you.” I said, “And I am right here.”

Yesterday afternoon Kate worked in the yard. I called her in about 45 minutes before I felt we needed to leave for dinner and the concert. I had told her a little earlier where we were going. I reminded her when I went out to get her. When she got dressed, she was dressed more informally than I thought she should. She asked me if she met my approval. That led into a comment or two about where we were going. She hadn’t remembered at all. When I reminded her, she felt she should change. Even though I believed she was dressed too informally, I told her she was all right. She could tell my heart wasn’t in it. Ultimately, she changed, but the top she was wearing was soiled in several places from cosmetic stains. Later I noticed that her slacks were also soiled.

That reminds me that something new is that she is beginning to make a habit of asking me about the clothes she wears when we are going to something a little more special like last night. She did not do so last night, however. It is clear that she is releasing her independence a bit by soliciting my opinion on her clothes.

She also commented to me this week that she wants to please me. This came after she had gotten ready on time when we were going someplace.