Going Back Home

As we were preparing to leave the Residence Inn in Lubbock, Kate made a point of telling me she was taking her computer on board the plane to Knoxville. I told her she seemed quite insistent on that. She said, “I thought you would tell me not to take the computer on board; to take the iPad.” This is an illustration of the frustration she is having with me and the irrational thinking that is becoming more common. Of course, she was going to carry her computer on board. That is what she always does.

Sticking to a time schedule is a consistent problem. For example, at 8:30 I told her that breakfast would end at 9:30. I said that she did not have to rush, but I wanted to let her know how much time she had. At 8:50, I told her she had 30 minutes to get ready. She was still in bed. She was still getting ready (slowly) at 9:17 when I told her I was worried that she was going to miss breakfast. We left and made it. Without my pushing, she would never have made it.

Re-Grouping

Much has happened since Dad’s death and memorial service. Kate and I have both experienced a “letdown” that I consider one of the stages of grief. We haven’t felt sad. In fact, we are pleased with the way Dad left us. He had the birthday that he lived for all year, and when he died, he did so without pain. Despite the good things that we can say about his passing, we have both felt lethargic and just not up to doing things. This has led to our trying to entertain ourselves more than usual. We have been to several movies, several live performances at local theaters, and eaten out at places that are a little more special than we usually do. In addition, I booked a trip to New York. We leave this Tuesday morning and return Friday evening. I would never have considered doing this if Dad were still alive. Now that he is gone, there is no reason that we can’t, and I feel we need it.

I should say that I believe we are both at the end of our grieving. We went to Jesse’s for Thanksgiving. On the way back, Kate said she felt she was over her slump. The visit with Jesse’s family had given her a real boost. In many respects I feel the same way except that I find myself waking up at night and not going back to sleep the way I usually do. In most cases, I find my mind wandering to thoughts about Dad.

I have been especially anxious to comment on Kate and how she is doing with respect to her Alzheimer’s. I am clearly sensing that she is deteriorating further. It makes me wonder if we are nearing a time when I should let the children know. I will wait on a decision until after our visit with Kevin’s family for Christmas.

When the family was here for the Dad’s party and then two weeks later for his memorial service, she did little to help get things done. To some extent, I may have saved her by telling Larry that I didn’t want her to have to do much and welcomed his offers to help. He and other family members came through with food and preparation that helped us tremendously. Of course, Dad’s sister-in-law, as always, was a big help as well. She came a little early before the party and the memorial service just to help.

I am seeing so many signs of Kate’s condition that I can’t begin to summarize them here. Things are happening all day, each day. In general, it manifests itself in two ways. First, is a dysfunctional way of addressing all of the numerous tasks that most of us take for granted. One silly one is that she never sufficiently cleans out the yogurt container after eating her yogurt. I come behind her and rinse it further. Similarly, the spoon she uses is rinsed, but she never completely rinses it. She does things like leaving clothes on the floor or hanging them up very sloppily if she hangs them at all.

The second indicator is one that people would suspect. Her memory is deteriorating. She simply can’t remember routine things that I tell her. She repeatedly asks me what day we are going to New York or whatever else we are planning to do. I have to stay on top of all obligations, not just for me, but so that she can be prepared. Ironically, she recognizes that she has trouble getting ready to go places and has started working harder to be on time when we are going out. She even feels that she is doing well at this and feels that I don’t trust her enough.

Another symptom that is not brand new, but increasing, is a kindness toward people. She thinks many people are smart. She also comments on how good the preachers’ sermons are. This is true across the board for our senior pastor and the associates. On the way to lunch today, she said something about how good the sermon was and then said, “Of course, I can’t remember what he said.”

We don’t talk a lot about her condition. I try not to do anything to draw attention to it. I let her do the talking. She doesn’t say much, but she does tell me about things she has done or forgotten. I just give her a hug and tell her I love her. She depends more heavily on me than in the past, but she also shows a desire for more independence. She takes pleasure in letting me know when she remembers something she expected me to think she would forget.

I was quite concerned about her at Jesse’s for Thanksgiving. She spent a lot of time in the bedroom while I spent time with Jesse and Greg. My own interpretation is that she just can’t carry on a conversation for very long. She is still great at the initial small talk that is part of what we do when we haven’t seen people in a while. After a while, it is too much for her to handle. She has trouble following conversations, movies, plays, etc. The surprise is that when she told me that she thought she was coming out of her slump, I thought she was talking about being in a slump at Jesse’s. When I asked if she meant at Jesse’s, she acted offended and said, “Of course not. I was just fine at Jesse’s. That makes me think she has deteriorated to the point at which she does not recognize how her retiring behavior appears to others. It seems strange. She is simply withdrawing. This is the kind of thing that I would expect most people to notice first before recognizing the memory problem.

Mini-Crisis

Memory loss is generally believed to be the primary symptom of AD. For Kate I think it is the dysfunctional way she addresses everyday tasks. Part of this I believe may relate to memory. Let me give this example that occurred this morning and the previous few days.

Kate recently learned that she would be interviewing candidates for a PEO grant this morning. She knew that she would do this with one other other person. Knowing that I would need to take her because she would get lost, I asked her what time she was meeting. I did not ask the location because she has always met in the library. Kate told me she didn’t know, that she had the information in an email on her computer. I asked her again last night what time she had to be there. She said she would check. This morning I asked again. She simply said, “Not yet.” I asked again a little later. Finally, at 9:20 I asked again. She did not seem concerned but a little frustrated that I would keep asking. I told her that I only wanted to know because we might have to be leaving right away. She got upset and started to cry and said would call the PEO sister she was working with. I followed her. Kate didn’t know where her phone number was. She ultimately found it in her PEO directory and called her at 9:25. She found out it was 9:30. We rushed right over to the meeting place. We got there at 9:45 and found the building was closed. We went to another building to see if we could find any information that would help us. We finally learned where the meeting would be and got there right as the first candidate was leaving.

I know this was an embarrassing situation for Kate. This is the kind of thing that is going to catch up to her, and her friends are going to recognize that something is wrong.

In addition, I talked with Kate last night about her role in this year’s process of selecting candidates. I reminded her that when she finished the last time she said she would only help with the interviewing of candidates and would not get into writing letters of reference and helping the candidates get their applications in online. She did not remember this of course and did not like the idea. I told her if she wanted to do what she did last year, she should get me to keep the records, including contact information, for each candidate because she misplaces the information and then is frustrated when she needs info and can’t find it. This kind of thing is going to become a nightmare. We’re on the edge right now.

Jan’s Story

I am nearing the end of Jan’s Story, by Barry Petersen. It is an account of their lives during the time of Jan’s Alzheimer’s. As I may have said before, the title is not the most accurate. It really should be Barry’s Story or Our Story. This is my second time through the book. This time I have connected with it a little more. That relates to the progression of Kate’s disease. I can easily relate to many of the details (symptoms) that he describes. Of course, each person’s journey is different; so not everything is identical. Still, I found it comforting to listen to. I think this is especially so because I have told no one other than our pastor, about Kate’s diagnosis. I continue to believe that even the number of people who suspect couldn’t be more than a handful. I recognize, of course, that those who suspect have told others. No one, but our pastor, has given me even a hint of sensing something is wrong. I take that back. Our associate pastor said something that made me think she knows.

One of the things that struck a common core was the dysfunctionality of Jan’s behavior. That was the earliest sign that I had that something was wrong with Kate. I recall that she had her own suspicions very early, before I suspected. Barry talks about learning to bite his tongue when he saw her doing silly things. I am trying to do the same. This book has given me a additional motivation to do better. I have noticed recently how much Kate is bothered by my looking over her shoulder and telling her what to do or that she has done something wrong. This is hard. Intellectually, I already know this is something that she cannot control. That means there is no good to come out of correcting her.

Some things are a particular problem because of my own personality. For example, she is not good about rinsing dirty dishes. Yesterday, she left a used container of yogurt on the counter. When I came in from Dad’s yesterday, I saw it and that it was covered with gnats. I rinsed it and put it in the recycling. I didn’t say anything to her because this is something she won’t be able to change. This means I have to check behind her a good bit. That’s easy for things like the yogurt container because it was in plain sight. The problem comes when she might put something in a place I might not see it.

Interestingly, I don’t see any signs that she tries to hide her deterioration. For example, yesterday after we returned from Gordon Seacrest’s burial, she came to me with her earrings in hand. She said, “Look what I did.” She had worn an unmatched pair of earrings. I just gave her a hug and said that no one would have noticed. Later yesterday as we were walking up to the Seacrest’s house for dinner, she noticed stains on her pants. I am noticing many more examples of her not being as concerned about her appearance as she used to be. She goes out in things that have a few spots. This means I need to pay more attention before we leave so that she is able to change.

Petersen’s book utilizes Alzheimer’s 7 Steps as a marker for some of the chapters as he details where Jan is at any given time. That made me go to the Alzheimer’s Association website last night and take a look at the steps. Based on the descriptions, I would say Kate is somewhere in Steps 3 or 4. These things are not precise, and I am not concerned that they be so. We still have a long way to go.

Continuing Ups and Downs

The past two days with Dad have been super ones. On Monday he was up when I got there. Yesterday he was still asleep but awoke easily. This has been a pattern for 3 weeks or so. Prior to that he had always complained that “I’m still asleep.” I am beginning to wonder if the change in his medicine might have made a difference. That’s the only reason I know of.

Both of the past two days he has been alert with no delusions. In fact, he entered into a conversation with the daughter-in-law of a woman who eats at the next table from Dad. I turns our her father was from Rogersville where Dad lived while a boy. They chatted about familiar things. He was amazingly clear headed. He also has continued to eat well. I think they are following up on my concerns about his diet and giving him things that don’t choke him as easily. For the most part, however, he has generally been eating well for several weeks starting about 2 weeks after coming back from the hospital.

There are several things to report about Kate. First, I hurt her unintentionally last week. It was a Monday night, and I had brought home something for us to eat. It was a beautiful afternoon; so we decided to eat outside. She wanted to eat at the table, but when I went over to the table I notice that it was messed up with potting soil that she had spilled while potting plants. Some of the soil had spilled over onto our new cushions. It had also rained earlier so there was a slight mess on the chairs. I said something to her about her having promised that she would watch out for the news cushions so they wouldn’t get messed up. I didn’t want them messed up so quickly, especially since we had done this in preparation for Dad’s birthday party.

I thought that I had made my remark as gently as I could, but it hurt her deeply, and I felt miserable. One of the things I have discovered is that she is very sensitive. I also believe a major part of this is that each event like this is another sign of her inability to do certain things. She is finding fewer and fewer things she can do well.

One example of her difficulty doing things is posting a message on Facebook. She asked me to show her how; so I brought up the screen with the space to enter her message and left the room. I’m not sure what happened, but she let me know it didn’t post. I set it up again, and she ran into another problem. Finally, on the third try with me by her side, she did it.

The really good news is something that I have mentioned before. In most respects, people would never know that she has Alzheimer’s. She is good in conversation. She only slips up on remembering who people are, but it is usually easy to get around that by being pleasant and acting like she knows them. The other day a neighbor, pulled up in the driveway when she saw Kate working in the front yard. Kate didn’t recognize her at all. She asked Kate for a copy of our neighborhood directory to give to 2 new families that have moved to our street. Kate told her to see me and that I would give them to her. When she asked me about the directories, I told her I was unaware that we had any remaining directories. I did this because Kate had been unable to locate any several weeks ago when we were working on the information for a new directory.

The directory is another of those tasks that is a problem for her. I have taken that over, and she hasn’t said a word. There are many things like that. She takes most of them very naturally. Other times she is bothered by my trying to help her with something she feels like she is able to do.

I am re-listening to a book by Barry Peterson called Jan’s Story. It is an account of his experiences with his wife who had Alzheimer’s. One of the things he mentioned is the change in conversations that he and his wife used to have. That is definitely happening to us. Kate cannot follow anything that is the least bit complex. I am quite accustomed to her saying, “Let’s not talk about it.” Often it doesn’t leave much that we can talk about except to reminisce – past experiences, places we have been, special moments shared together.

I am also noticing more memory loss. That is something that most people see as the key problem with Alzheimer’s, but I have felt that in the early years it is the inability to function well on everyday tasks that is the real problem. Before I really believed she had Alzheimer’s, I thought she was having a problem with depression. I have no doubts now that the problem was Alzheimer’s.

I continue to believe we are better off for having learned of her diagnosis. It has given us the opportunity to take advantage of our time together. I think we have both been committed to this end, and it has worked. We continue to enjoy ourselves. When we go to dinner as we did last night, it becomes a special moment for us even though it was just a Tuesday evening dinner. I am optimistic that we will have many of these times ahead even as she declines further.

Averting Crises

This week we have experienced two near crises. I’ll mention the second one first because it is the one that scared me. First, is the background. Kate had a dental implant on Wednesday morning (today is Thursday). She was sedated and continued on pain medication through 10:00 pm that evening. We were prepared for her to feel pain yesterday as well. As it turns out, I had arranged to be at the foundation at 8:30 am yesterday morning before I realized that Kate had a PEO luncheon. She was to meet Shirley Hazel at her house at 11:00. Since I was going to be gone, I prepared 2 sets of medications (1 for 10 o’clock; the other for noon – if needed). I put them in 2 separate sandwich bags with written instructions on each one. I also set her GPS to direct her to Phyllis’s house. In addition, I checked to make sure her driver’s license and ATM card were in the console in her car where we have agreed she needs to keep them.

I finished my meeting just before 10:30 and placed a call to her to make sure she had not forgotten to get ready to meet at Phyllis’s house. She sounded hurried but indicated she was going to make it. I arrived home at 11:59 and was surprised (I don’t know why by now) to see that her car was still in the garage. As I started to go inside, I saw that she was getting ready to leave. She was in a dither, got her purse, and rushed to the car.

About 15 minutes later, she called to say the GPS had her turn on the wrong street and didn’t know where to go. I guided her over the phone. About 20 minutes later I got a call saying she was there. A few minutes after that I received a call from one of her other PEO sisters who was the driver for the the car Kate was to go in. She said they had waited but finally had left and were at the restaurant where the luncheon was being held. After we hung up, I called Kate and told her they were already at the restaurant,and that I would be right over to take her there. I did so, and she got there around 12:30.

When it was time for me to go to visit Dad (around 3:30), she was still not home. I began to worry. I sent her a text asking where she was but got no response. That is not too surprising since I knew that she would have her phone turned off. When I reached Mountain Valley, I called her at home and her cell and got no answer. While visiting Dad, I called a couple of other times. Finally, I called one of her PEO sisters just before 5:00. She said that they had gotten back about 3:30 and that Kate was fine. I decided to head home.

As I left, I called home, and she answered. She seemed quite glad to hear from me and asked if I were coming home. I told her I was on the way. I reminded her that we were supposed to be at a church supper at 5:30. She had forgotten and was disappointed. After we hung up, I called back and told her we didn’t need to go to the church supper. She asked me to just come home which I did.

When I arrived home, she was lying down on the love seat on the patio. I went out to talk with her. Actually, I was proud of myself. I never asked her where she had been or what had happened. In fact, I didn’t ask her anything. I just sat with her, told her I loved her, and asked if she would like to go to Hathaway’s for dinner. She gladly accepted the offer. We went out to dinner, came home, and she went to bed. We still have not discussed what happened and may not. I have learned that when she is ready to talk, she will let me know. Had I asked her, she would have said, “Let’s not talk about it now.” That is a very frequent response.

This particular event disturbed me because it made me realize how much she has deteriorated. While I was home that morning, I found 1 of the 2 sandwich bags with the pain medication she was to take at 10:00. The good news is that she didn’t need it. In addition, I gave her a 20 dollar bill when she left. By the time I picked her up, she couldn’t find it. Third, it made me realize that it may be getting dangerous for her to be driving. I think I am going to need to take her everywhere except those places she knows very well.

The other event is minor in comparison but was an emotional one for both of us. She has been working on the invitation to Dad’s 100th birthday party for at least 2 months. I have reminded her that I wanted to mail them out today or tomorrow (and we will make it) and that we needed to get the invitation ready. Each time she started to finish it, she would change something. It simply wasn’t getting done. Furthermore, she would forget about it and not work on it until I would set aside some time when I was home for the two of us to work on it.

Finally, on Monday evening I said we had to get it done that night. She wanted to continue editing. I told her just to leave it. This really hurt her feelings. She has wanted this to be her baby, but she recognized that she couldn’t get it done and resented my pushing. We went out to dinner, and all was well. The truth is I felt if I wasn’t stern, we wouldn’t get it done. This portends other things to come although the only reason this was critical was we were working together and I had a deadline. Most of her other things (the yard) don’t have a deadline. That’s a really good thing.

Moments of Frustration

I just left Kate in her office where she is working on the invitation to Dad’s 100th birthday party. She started on this about 6-8 weeks ago and had it virtually done. I had given her some edits, especially a couple of pictures I wanted instead of the ones she had put in. I have been diplomatically (I think) trying to get her to finish as soon as possible so that we would not be in a rush near the end. I plan to mail them out next Thursday or Friday. Several times over the past 2 weeks, I have mentioned that I wanted us to finish the job. She forgets and doesn’t get to it. Then when I nail her down and say let’s do it now, she starts to edit more and more the way she did on the album for her mother’s family she had done with her brother Ken. At lunch today I said we would come right back and print the invitation before final edits. She first had to take care of watering plants. Then she came in. I just found her editing some more, and all I want is to printed them. When we tried last week, it was printing too small. We have to solve that before we can go any further. At this point, it would be easier for me to take it to Staples for printing, but I don’t want her to feel bad. In the meantime, I feel frustrated because we should not have found ourselves into any last-minute rush. This kind of thing has become the norm though.

Feelings of Being Unappreciated

Yesterday as I was leaving Mountain Valley, I had a brief conversation with the woman who owns the dress shop where Kate buys a lot of her clothes. Her husband is there on rehab and will be going home next week. She had mixed feelings about his coming home related to the responsibility of caring for him. She noted that he has so many needs and is always asking her to do things for him. I shared a similar feeling about Dad. I do so many individual things while I am with him that I wonder how he gets along when I am not there.

That led me to think about taking care of Kate after her colon surgery as well as her foot surgery. It seemed like she was always asking for something. Of course, she was. After all, we go about our daily activities doing a lot of things for ourselves. When we are handicapped, we don’t want to give up everything. Naturally, some of the things we want are not frills – e.g., medications, especially those for pain.

My point is that it can be hard for the caregiver even if the patient is considerate. They have many needs that require attention. This also made me think of something yesterday. When I got home after Kate’s PEO meeting, she was not home and all of the dishes were on the kitchen counter and the island. Plates had been rinsed but serving dishes were mostly sitting with the remains of food. I cleaned up almost all before Kate got home and took care of the balance after we returned from a reception at the foundation. She never said a word. It was as though she never noticed that it was there to begin with. I didn’t fret over this, but I did have an immediate feeling of not being appreciated. On balance, however, she is quite good about making me feel appreciated, but there are lots of things she doesn’t notice because of her AD. This was one example and there is no good reason to get hot and bothered over such things.

Everyday Surprises

Today Kate is hosting her PEO chapter and is also doing the program. At last month’s meeting something came up about the September meeting. It wasn’t until then that Kate remembered that she was hosting it and that she had the program. A couple of weeks ago she was working on her program and felt good about her progress. Since then she has not worked on it. I think that is because she felt it was in pretty good order and wouldn’t have much to do to complete it. On Monday or Tuesday of this week I mentioned that it would be nice if we cut the grass and cleaned up the yard. Kate didn’t respond. Then yesterday while we were at lunch I mentioned her PEO meeting for today. She said, “It’s tomorrow?” She had completely forgotten. This is another example of my need to remind her of her commitments, appointments, etc. The trick is that she seems to be getting more sensitive about my playing a larger role and is quick to show me that she can remember, that she can be on time, etc.

I got the coffee ready for her and wrote a note in front of the coffee maker telling her to press the on/off button 10 minutes before she wanted to serve the coffee. I wrote another note telling her that the half ‘n half was on the top shelf of the refrigerator in the kitchen. I went to Panera and bought bagels and cream cheese. I put the bagels on the island where she couldn’t miss them and attached another note saying that the cream cheese was in the refrigerator in the laundry room. Before leaving I showed her the notes and reviewed what she was to do and where to find things. Not too long after I got to the office I received a call. She asked in a semi-panicked tone, “What about the coffee?” I told her there was a note in front of the coffee maker telling her to press the on/off button 10 minutes before she wanted to serve the coffee. She then asked me where the coffee maker was. The surprising thing is that the coffee maker is always in the same place on the kitchen counter right under the cabinet that holds our everyday pottery. In other words, she opens that cabinet every day for something. These things don’t bother me at all except that I feel sad for 2 reasons: 1) It is another reminder of the progression of her illness and that things are getting worse and 2) I feel sad for her because I know she must experience an immense amount of frustration over such things.

Something that bothers me in a different way is what I consider her misplaced emphasis on priorities especially when time is short. First, on occasions when we are going somewhere together, I get frustrated when she spends time doing things that don’t need to be done at that time. Second, because getting ready for anything is difficult for her, I have to play a greater role in seeing that she is ready. I find myself getting irritated even though I know that she can’t help it.

This morning is a case in point. When it was 45 minutes before she was having company, she was outside piddling in the yard. When I went out to get her, she said, “I know. I am coming in.” This is an everyday occurrence. As I have mentioned several times, I think she gravitates to the yard because it is the one thing that she can do that doesn’t involve her feeling that she is doing something that is wrong or having me tell her she has done something wrong. I am sure that if a master gardener were watching her, he/she would point out many things that she is doing wrong or inefficiently, but this is one thing she can do without that kind of experience.

Because she can spend hours in the yard even when it is hot, I need to come home early if we are going someplace at a particular time. She isn’t able to answer the phone when she is outside; so I need to be home early enough for her to start getting ready. I cannot count on her remembering.

All Went Well

Last night our dinner with friends went well. The woman who mows the lawn came earlier in the day, the weather was pleasant, and everyone showed. No disasters occurred in connection with our preparations. Kate stayed out in the yard until 90 minutes before the guests arrived, but I had already settled on taking care of all things that I could. It worked. The sad part is that she thanked me for taking care of everything both last night and again this morning. It makes me sad for her to recognize her dependence on me.

When I left for the office this morning, she was pulling weeds in the front yard. I know that one reason she likes to work in the yard is that it is something that she can do. There aren’t as many “rules” that she has to follow or things she has to remember. She can just pull weeds, plant plants, and prune shrubs. It troubles me (and I know it troubles her) that she is so unable to do so many things.

I can’t recall whether or not I said this in an earlier post, but she told me the other day that next year she is going to ask Shirley Hazel, the PEO sister with whom she works on the scholarships, to do all the computer entry and letters of recommendation. She does still want to go with her to interview the candidates. I had been wondering about her telling Shirley that she didn’t want to continue, but this is much better that she chose this direction for herself and that she can maintain some involvement though minimal.

I think she needs to do the same with the responsibilities for the neighborhood newsletter and directory. Perhaps she will come to this conclusion herself without my saying anything.