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Saturday

Last night while we were having dinner, Kate said, “You know, my memory is getting worse.” I told her I had observed that and noticed that she had seemed a little discouraged. I also told her that she had gotten along so well and that we were still able to enjoy so many things. She agreed. She also commented that although her friend, Ellen,  knows, “no one else would know.” She went on to say that she still was not ready to tell the children. She also said she would know when it was time and that she would let me know ahead of time.

I found this especially interesting in light of this week’s experience in which she accepted without any suspicion my awareness of her PEO meeting and plans for her to meet her PEO sisters for the trip to Sevierville. Clearly this lack of suspicion is a direct result of the progression of the disease.

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Making More Adjustments

As we prepare for the music club at our house this coming Monday, I am coming even closer to adjusting to Kate’s inability or unwillingness to take care of some of the things necessary to get ready for entertaining. She has cleaned up the large guest room and the small guest room. I am not sure where she has put everything, but her office is still a mess. Although she had told me on Monday night that she would let Libby help her clean up, she refused to do so yesterday when Libby was here. As I reported yesterday, she was almost in tears when she told me we would just keep her door closed for the music club. I have let it go; I know everything will be fine. I was never concerned about the music club. I just thought it would be a good excuse to get cleaned up.

I am more interested in the outside of the house now. I have arranged for hardwood mulch to be delivered today. I also contacted a young man to come over tomorrow and spread it in the flower beds. I have also asked Libby to come on Saturday help with some last-minute things like the patio and garage.

A few days ago I had asked Kate not to do anything to mess up the yard after the woman who cuts our grass had come. She was here yesterday. I know that Kate will have forgotten and plan to drop it. I’ll just let her do what she is able and wants to do. That is working in the yard as long as she cares to do so. We bought more plants yesterday. She wants to go back for more today. She has planted a lot of what we have purchased but not all.

I am slowly learning the lesson that I must learn and that is not to have any expectations that she will be able to do anything to prepare for events like this one. The disease simply won’t allow her. Of course, I have been doing this all along, but it is not something you just start doing. That is especially true since she is always trying to assert her independence and not accept any suggestions or help that I want to give. Increasingly, I am learning to let her do what she wants and can do. I can tend to the other things.

One of the ways in which she is declining is not to notice things that are in front of her. For example, at dinner last night we split a shrimp and flounder platter. She said she was getting full. I noticed there were still two shrimp on her plate and asked if she were going to eat them. She said, “”Where are they?” I showed her. They were in plain sight. She wanted and ate them.

When we returned home, I picked up the mail. There was a card from Ellen thanking us for taking her and her daughter to lunch for Easter. I left it on the island where I thought she would see and read it. Later I asked her if she had read Ellen’s note. She hadn’t; so I got the card and put it on her side of the bed while she was brushing her teeth. When I came back into the room, I asked if she had read the note. She said she hadn’t and asked where it was. I saw that it was on her bedside table; so she had picked it off the bed and put it there. She hadn’t noticed or felt any desire to read it. She had simply put it aside. This is a common thing that she does with email and regular mail. It is as if she doesn’t see these things which I do believe is part of it. Frequently I notice that she can’t see or read things that I point out wherever we are. It reminds me of the exercise I took one time at an Alzheimer’s workshop. We were asked to put on sunglasses in a dimly lit room and go from table to table trying to sort different items. I just couldn’t quite make things out. This was to give us an idea of what it is like to be an Alzheimer’s patient.

Two days ago I finished a book. I still have a day or two before getting my new Audible credits; so I started listening to Jan’s Story. It is written by Barry Petersen who was a CBS journalist. His wife, Jan, had Alzheimer’s. I have listened to it twice before. At that time and now, I feel that it is really his story and not hers. Most of what he says tells more about his adjustment than hers. This time, however, I found myself more able to relate to what he says because I am experiencing some of the same things. I also notice differences in their situation from ours in the same way that I have done when I have spoken with friends who care for a spouse with Alzheimer’s. All of this reminds me that as similar as we are, we are different as well. We are not identical.

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Reflecting on Christmas in Memphis

We got home from Memphis late yesterday afternoon. We had a great time with Jesse and her family. Kate had an especially good time. She enjoys being with Jesse and her family as well as their neighbors, Jeff and Sally, across the street. As she usually does, Kate handled herself well at the reception. She introduced herself to people and had conversations with them. On Christmas afternoon, Jeff and Sally came over before we had Christmas dinner. They were there about 30-40 minutes. Kate and Sally were in their own conversation the entire time.

Kate continues to speak a lot about her family. She also is very expressive about how much she enjoys things (food and people). Yesterday morning I asked Jesse if she had noticed anything different about her mother since they were last together. She said she didn’t though she said she noticed Kate seems more expressive about things. I told her that confirmed what I had heard from Kevin at Thanksgiving. I reiterated to her what I have said here and to others. The good thing about this illness is that she is able to get along so well in social interaction with other people. There are only little things that someone who is close to her might notice. For example, Jesse and I both noticed that when she was speaking to Kevin’s children on Christmas evening, she was thinking that Christmas would be the next day. She asked at least one of them if he was excited about tomorrow and getting presents though that had already occurred that morning.

When we were in Fort Worth for Thanksgiving, she received a directory for her high’ school class. She has misplaced it and has wanted to send email Christmas messages to a number of her friends. She asked me about it several times during the week preceding our trip. At least one of those times she thought I had it. Once she asked me was immediately before the trip. She asked me a couple of times during the trip. She may have asked me about it last night. I know she asked me about it a few minutes ago. Again, she thought I had it. I told her that it was misplaced a couple of weeks ago and that she had said she was going to contact a Waco friend about getting another one. Even though I am quite aware of her forgetfulness, it is surprising to me that she would so easily forget something as important as this directory and after so many times that she has mentioned it to me, and I have told her it is misplaced. I am confident it is here in the house because I can’t imagine her taking it out with her.

One of the days we were in Memphis I got on the Alzheimer’s website and reviewed some of the entries on the caregiver/spouse forum. I found this quite depressing and don’t intend to go back until Kate’s condition has progressed much further than it has so far. I was reading all the horror stories involving bathroom habits, changing bed clothes, etc. It was too depressing.

It did give me two impressions, however. First, Kate is not nearly as far down the path of Alzheimer’s as others. Second, it reminds me what I may face with time. That sensitized my observations about her increasing memory failure. That made me wonder just how much time remains that we can enjoy ourselves. We are truly enjoying ourselves even with the memory issues. When she is no longer able to enjoy social activities or people and can’t remember friends, I will have more of a problem.

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PEO Sisters Know.

On Sunday we went to a Christmas concert. Kate’s PEO chapter took this opportunity to make it a club social as they did last year. I went to get the tickets Sunday morning and didn’t find them where we keep tickets. I remember that Kate brought them home from a meeting and had them in her PEO bag. I thought I had removed them and put them with our other tickets. I obviously didn’t do so. Kate just walked in. Will continue later.

Next Morning, 7:41 am

Just back from my walk. Kate has gone back to bed, a common pattern for her. She gets up and eats. Then she gets back into bed with either her iPad or her laptop. She gets sleepy and rests a while.

Let’s go back to Sunday. We didn’t have our tickets; so I called  a PEO sister who arranged for everyone’s tickets. She didn’t answer, and I left a voice mail message. She called back later, but we were at the concert or dinner.

Yesterday morning I called Linda. I wanted to apologize for not taking care of the tickets and also to see if she understood Kate’s situation. As I suspected, she said they all knew. She indicated that is why they someone to our house early on Thursday – just to make sure all was in order. I told her that the diagnosis had been 4 years ago this coming January 21. She seemed quite surprised that it had been that long. I didn’t tell her a lot but did ask that she keep in communication with me regarding any obligations that Kate has (like meetings, etc.). She agreed to do so.

Kate and I both continue to believe that she is getting along pretty well. Kate especially does not realize the full extent of her condition. At lunch the other day she asked me if I had seen the ad for a movie about Alzheimer’s. I asked if she meant Still Angie? She said she thought so. She told me she didn’‘t want to see it. I told her I had read it and that the situation was different from ours in a number of ways. First, Angie’s condition progresses rapidly over a 2-year period. Second, Angie’s husband is focused on his career which leads him to be much less sensitive than I think he should be. That led to her telling me that she thought she was doing well. She mentioned that she does have to ask me about names. She didn’t say something that I believe she also realizes. She asks me many things repeatedly – what time we are going someplace, etc.

One thing I am asking myself now is how blind I might be to her condition. I clearly believe she is much further along than Kate does, but I have a hard time imagining that in another year that she will be as far along as Angie was at the end of two years. In time I am sure I will have an answer to this question.

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Getting Ready for a Party

When my alarm went off at 5:00 this morning Kate was irritated that it had awakened her. This is not the first time she has been irritated by it. This is a change, however, from the pattern over the years. I have set my alarm for 5:00 a.m. on Mondays, Wednesdays, and Fridays for many years. It is only recently that she has had a problem. Several weeks ago, I stopped using the alarm on my radio because I thought it was too aversive. I selected what I thought was a soft tone on my phone. I guess I need to look for something else.

As I was thinking about going to the store for half and half and a few other things, I thought about napkins. Kate walked into the room. I asked, “”What do you usually do for napkins?” Her response, “”Leave me alone.” I did. I looked in the kitchen pantry and noticed that we have white disposable napkins. I will check in at Target this morning to see if they have something with a Christmas design.

I did arrange for Kate to get her haircut this afternoon at 3:00. I took her by to see Dawn who cuts my hair so that she could get the right color. Kate has asked Ellen about Christmas pottery that she might borrow. I suspect Ellen will bring it over this morning.

There is still much to do.

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More on Clothes

This past Saturday I took Kate shopping for black slacks. She told me she didn’t have any that fit. We bought 2 pair and a couple of turtle neck sweaters as well as another long sweater to wear over a blouse. This time I took pictures of them so that I know what to look for when the time comes. I also told her I wanted to know where she puts them so that I would be able to find them when necessary. She did not want me to do that. She said she would keep them where she could find them.

Last night as she was getting ready for the music club, she said she couldn’t find any black slacks that fit. I reminded her that we had bought 2 pair on Saturday. She asked where they were. I told her she had worn one on Sunday and the other was in my closet held back for alterations. I got the ones in my closet for her to try on. They worked except they were too long.

This was about 2 hours before we needed to leave. I told her that we ought to go get a quick bite to eat at Panera. She hadn’t realized we had so much time. She said she would change clothes before going. It turned out that she changed to a different outfit to wear to music club. About 40 minutes had passed; so I said let’s just go to Panera the way you are. You can finish getting ready when we get back. She told me all she needed to do was put on her make up. We went to Panera. When we got back I went to take a shower and get dressed. An hour later, after I was dressed, she had completely changed.

When we got home, I suggested she give her slacks to me to keep in my closet. This insulted her. I fear that she will lose these as she has the others.

In the meantime, she is having her PEO group over on Thursday morning for their meeting and Christmas lunch. Up until today she had done almost no decorating. I got decorations out of the storage room and suggested she look through them. She has done so and gotten some things out and also put up some decorations; however, she has a tremendous job to get ready for Thursday. She has refused my help and told me not to worry about it, that she would get it done. In a conversation with Ellen, I suggested that she might drop by in the morning to see how things are going hoping that Kate might accept her help. I have also arranged for the woman who cuts my hair to cut hers tomorrow as well as giving her coloring. She asked what the color is. I couldn’t answer; so I am taking Kate by her place this afternoon to let Dawn determine the right color.

The bottom line: Kate is continuing to get along well in many respects, but she is getting worse when it comes to organizing her life and remembering recent things. She needs to be reminded of just about everything.

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Sometimes Hard to Know What to Believe

Kate and I got back from lunch at a short time ago. While we were there a funny thing happened. I made a comment about the paintings on the walls. I mentioned one in particular and said that I liked it. Kate said that she had told Ellen how much she liked it on a previous visit. That led to our walking around the restaurant to see the other paintings. Each of us commented on the ones we liked. When we got back to our table she looked at the one I had first indicated I liked. It was the one she said she had told Ellen she had liked. She indicated she did not like that one. I didn’t say anything. I just accepted this as it is a common occurrence. One moment she will say she likes or wants something. In the next moment she says something counter to the first comment. It can make it a challenge to know what to say or do. You have to be ready for change.

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So How Are Things Going?

It is hard to believe that it has been a full month since I have updated this journal. I see that on Nov. 10 I started an entry but never finished it. I will do better this time.

Kate and I got back this past Friday (Nov. 28) from a trip to Texas. We flew into San Angelo and stayed a night with her brother,  Ken, and his wife, Virginia. The next day we drove to Fort Worth where we stayed two nights in the former home of one of her aunts and uncles. It is now called the Franklin House B&B. I had arranged this sometime ago and not told Kate. I wanted it to be a surprise. She loved being there as did Ken and his wife.

We met Naomi Richardson for lunch at Sadie’s Cafe. On Friday night we went  to Kate’s cousin’s house for barbeque. On Saturday we met Kevin and his family at Nate’s BBQ.  That evening we went to the TCU/Texas A&M football game in the new stadium. Although it rained, we had a good time.

On Sunday we drove to Lubbock where we stayed at the Residence Inn near Kevin’s house. We had a Mexican meal that night. On Tuesday we went to Rachel’s parents house. We then drove to a small town near Midland for lunch. That made for a nice day. We celebrated Thanksgiving at Ken and Rachel’s. Then we drove back to San Angelo on Friday where we caught our flight home.

There has been nothing of great import that has taken place since my last entry. Kate has had another appointment with her doctor. There was nothing to report on our end or on the doctor’s end. I would say that she continues to display some of the common symptoms that have happened pretty regularly over a long period of time. Our (my) biggest problem continues to be getting ready to go places. I may get a good taste of this as we prepare ourselves for several Christmas receptions, one of which is tomorrow night.

I would say that she has been somewhat more assertive about doing some things for herself. For example, I offered to help her with packing for our trip. She would have no part of it. As has happened on several trips in the past, she did not take enough underwear. One morning we had to go to Target for a bra. Another morning I went to Target for panties. One day, she put on a pair of my jeans. I never said anything. It gave her another change, they fit, and no harm was done. I don’t think she ever realized she had done this.

The first morning we were in San Antonio, she was looking for a bra and tossed clothes all over the bed. I volunteered to help and started putting clothes in drawers and the closet under the assumption if we got some things out of the way, it would be easier to spot her bra. I noticed that she took everything out of the drawers and put them in her suitcase. It turned out that she thought we were going home. The fact that it wasn’t even Thanksgiving did not strike her at all. One day during the week in San Antonio, she told Kevin about our staying at the Franklin House. She hadn’t recalled that we had taken him and his family through the house on Saturday.

She really enjoyed seeing people, especially her high school friends. She seems to be unusually enthusiastic and talkative when she gets together with people. I need to work harder on seeing that she gets more opportunities. We are together so much that we don’t talk that much. She is also getting a little stir crazy being in the house so much. Because of the cooler weather, she is not working in the yard nearly as much. That doesn’t’ leave her many things to do for stimulation.

We laugh a lot. She is much more prone to let me know about things I don’t do. Today, for example, I mentioned that I had not checked phone messages on our home line since our return. She wanted to know why I had not done it. Some of the things I consider to be cute. This week we had lunch at Panera. Each of us got, as usual, 2 napkins with our meal. Not noticing that she had two napkins, she reached over and took one of mine. It was only when I pointed out that she had taken my napkin that she realized she had napkins too.

On Friday morning in San Angelo she asked me if we were going home tomorrow. I told her we were going home “today.” She was ecstatic. Periodically through the trip home she expressed her eagerness to be home. Upon getting home and through the next day she continued to express her pleasure in being home.

In sum, we are doing well. I see no signs of depression on her part or mine. I do, however, recognize that she does not like being dependent on me to drive her everywhere. Today she also asked if I would build a fire for her to enjoy while I attended a meeting. I told her I didn’t feel comfortable doing so. She accepted that.

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Appreciation

In the recent past I have noted that Kate is more irritable than in the past. More specifically, I noted that she gets peeved with me. Now I would like to report that she is going through a phase in which she is expressing an unusual degree of appreciation for what I do for her. She frequently says, “”Marrying you is the best thing I ever did.” Every time I help her with something, she seems quite appreciative and is more expressive of her need for me than before. The things I do don’t have to be of much significance. For example, last night she picked up her iPad before getting into bed. She discovered the battery was exhausted. I said, “”Give it to me, I’ll charge it for you.” She said something like, “”Oh, that would be wonderful. I can never figure out which thing to use.” She handed the iPad to me. I plugged it in, and she picked it up and started using it. Then she said something else. I don’t recall exactly what it was, but it was an expression of appreciation.

This makes me wonder if she is experiencing more problems doing everyday things and suffering more frustration. Nothing other than her appreciation indicates that is the case. I also am beginning to wonder if she is entering a stage in which she doesn’t cognitively process things in a way that leads to her being depressed, but she clearly still feels frustration.

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Not Learning Enough Patience

It is now fall. That means another time for planting. We have been to Lowe’‘s a couple of times already. Friday Kate mentioned that she wanted me to take her back to get some more mums. Today after lunch I did just that. When we got to Lowe’s I noticed that she walked right by the table with the largest selection of mums that is right outside their main section. I got a cart and took it to her. I found her looking at a small section of mums like the ones she had purchased before. She didn’t get any. She walked around without appearing to have a plan. I am confident that she didn’t. Then she picked out a couple of plants that were not mums and continued looking at other plants that were clearly not mums. I suspect she had forgotten that she wanted to get mums; so I reminded her that she had wanted mums, and I wanted to make sure she didn’t get a full load before getting what she said she came for. She seemed to accept this, but before we could get back to the mums section, she picked out several other plants. If I hadn’t reminded her again, we might easily have purchased a full load and not gotten what we came for.

This, of course, is looking at it from my perspective. The reality (I believe) is that she doesn’t have a formal plan anyway. She just likes to buy things that she likes when she sees them. She can always find a place for them. She can tell when I get frustrated which must bother her, and it bothers me. I need to develop more patience to just let her do what she enjoys without trying to get her to approach things the way I would do.