Kate Tells Her Best Friend

I was about to write a new update when I saw that I hadn’t mentioned that last Tuesday, April 15, Kate told Ellen about her Alzheimer’s. They had had lunch the day before. I am not sure if anything special happened, but when I got home that afternoon, Kate told me that she was going to call Ellen about having lunch the next day and wanted to know if I could join them. I told her I could, and the she said she wanted to ask her over to the house following lunch. I suspected (and have also learned) that she might be telling Ellen. She only said, “Let’s talk about it tomorrow.” (This very frequent pattern of saying, “Let’s not talk about it now” or “Let’s talk about it later” I take as an indication of the frustration she feels when she tries to explain herself.) The next morning she told me she was going to tell Ellen.

After coming home from lunch, the three of us chatted for a short time before Kate simply said, “I wanted you to know that I have Alzheimer’s.” Ellen did not react. I was concerned about the way she might react because it might clue Kate in that I had already told Ellen. Later Kate told me she appreciated the way Ellen had reacted. She didn’t want anything that indicated great surprise or pity.

It was interesting to me that as Kate provided a little more information. She told Ellen that she and I were adjusting well and that our lives had not changed in any way since the diagnosis. Of course, that is not true. They have changed a lot. I also felt as though the way she expressed it reinforced my sense that Kate does not recognize how far along she really is. She is still thinking about years ahead when we do things with the grandchildren etc. On the other hand, I am thinking this summer may be the last summer that we host or travel with the grandchildren. That is because it is hard for me to take care of her and the grandchildren. I hope I am wrong. It could be that because the grandchildren are growing up that they will need less attention. As they say, “time will tell.”

One other related thing from the conversation with Ellen is that Kate told her that Ken also has Alzheimer’s but that he is further along than she. I don’t know how she got this impression. It is certainly consistent with other things about which she gets confused. The reality is that they had trouble diagnosing Ken’s Alzheimer’s because it is in such an early stage.

Kate’s current behavioral symptoms cause me to wonder if she is now entering that stage where she really doesn’t recognize that she has Alzheimer’s. This is hard to express. I don’t believe that she will really reach that stage until much later. I do think, however, that there might be a gradual progression toward that end and that I am observing the beginnings of that process. One of the things that is happening is that she is periodically irritated by my helping her. She points out to me that she does not need my help on most things. I am trying to be more careful in discriminating those things for which she does and does not need assistance. One of the many challenges for the caregiver is just this. There are so many things that the patient does wrong and also for which she asks help that the caregiver tends to extend that to more things than are necessary. That, in turn, takes away from the patient’s sense of autonomy. I’m going to be working on this. The other side of the coin is that the patient easily grasps some areas where she needs help but doesn’t see others. As with most things, it is an adjustment for both patient and caregiver.

Caregiver Stress

I am only minutes away from finishing Jan’s Story. I have a number of reactions. The biggest problem I’ve had is the title. I still think Petersen is telling his story more than Jan’s. It is clear that he has suffered a tremendous amount of stress that I haven’t come close to having. Listening to the book again is causing me to reflect on my own adjustment to Kate. One thing I struggled with is the last chapter or two when he talks about establishing a relationship with another woman. This would seem to be a difficult thing for me to consider. I simply can’t imagine it’s happening. I do understand that each person’s situation is different; so I’m trying not to be too critical of him.

As to my own adjustment, let me say that I clearly am making continual adjustments to Kate’s condition and specific things that she does. I do not, however, feel that I am under tremendous stress (underscore “tremendous”). I also experience the pain at signs that our relationship is changing for the negative. One of those is that I have to be very careful what I say and do. She is quite sensitive and feels hurt or angry or both when she feels I am criticizing her in any way. Another thing is the change in our conversations. This is minor at this point, but I can see a more serious change is on the way. I tuned into that problem in Petersen’s book. There are limited things we can talk about, and we can’t get very deep into anything. It is simply too frustrating. I emphasize again that this is not a big issue yet. I say that because Kate is much less talkative than I. She feels comfortable with periods of silence. For me, when there is silence, I feel a need to fill it with chatter about something. For her this can actually be annoying. Now I am more comfortable with silence because I know that this really is good for her. The things that she talks about most involve the yard and her plants and the house. We also talk about previous trips and the good times we have had.

Another minor problem for me is something that relates to our differences in communication. I would be more prone to acknowledge publicly my Alzheimer’s. She still wants to keep it secret. I do understand why she feels this way. She is not one to lead a cause; so she doesn’t want to do anything like President Reagan or the UT women’s basketball coach. The big issue for her is the way she is likely to be treated if people knew. As it is right now people treat her normally. That might be very difficult for them to do if they were aware of her condition.

One reason I am keeping this journal is that I might want to be public sometime in the future when it would not matter to Kate. I can easily see my creating a blog or speaking to support groups or volunteering with the Alzheimer’s Association in some way. In fact, if my health still permits, I believe I am very likely to make a commitment to work in some volunteer capacity to assist either caregivers or patients or both.

Our 50th Anniversary

This past Friday we celebrated our 50th anniversary. I spent most of the day with Kate, and we went out to dinner that evening. This entire week we have reflected on the things we have experienced together. Our relationship continues to be special. Although it has always been good, it has taken on a different nature since Kate’s diagnosis. As I expressed before, I wish that I had been able to respond to her before the diagnosis the way I have since. I have been significantly more understanding and , thus, accepting. Many little things that annoyed me before (for example, the way she loads the dishwasher) I simply accept now.

This is also to underscore that many of the things that I attribute to Alzheimer’s are things that were manifest earlier. They are just significantly worse now. One example would be the fact that when she opens a pack of sugar substitute, she leaves it on the counter rather than putting it in the trash which is immediately below where she dropped it.

I continue to observe that she accepts her dependence on me. She wants me to help her with most of her tasks (PEO, neighborhood, calls to people, etc.). I acknowledge that this puts some degree of stress on me, but it is quite manageable right now. I know the future will be different. Adding to this is care for Dad. He celebrates his 100th birthday on Oct. 19. We begin to act as though he will live forever. While I know this is not so, he could live long enough to complicate my care for both of them. I suspect, however, that it will work out. By that I mean that he will pass away before Kate reaches a point at which she requires constant attention.

Going Through Different Phases

Right now I feel a little rushed. I have things to do to catch up on that I put aside when I was preparing for Dad’s party. Then it was the 50th TCU class reunion. Now we are leaving for Jesse’s for Thanksgiving. I have bills to pay and arrangements to make for various things. In addition, I continue to have responsibilities with Dad. In particular, I have been trying to work out a way for his blood sugar level to stay at a desirable level. I am concerned because he keeps having low blood sugar levels. The staff is concerned because he has high levels. He also had surgery on his right forearm this past Friday to remove a squamous cell carcinoma tumor. He is scheduled to go back next Monday to have the stitches removed, but we are going to Jesse’s that day.

At the same time, I am just becoming aware that Kate and I are moving into a new stage in our journey. Even before her diagnosis almost 2 years ago, I was taking a larger role around the house. She had given up cooking some time before then – perhaps 3-5 years. The only big change that occurred immediately after diagnosis was my making sure I spend as much time as possible with her. I started taking her to lunch everyday instead of eating alone. I was still working a full day at the office then. As time passed, she became bothered by the time I would get home after visiting with Dad. That led to my taking off work a little earlier so that I could spend the same amount of time with Dad but get home a little earlier. Gradually I have stopped working in the afternoon. I go to lunch with Kate. Then spend some time at the house working on the computer or other odd jobs.

Over the past 2 years, I have now come become responsible for almost all of the household arrangements except decorating and tending to her plants. Both of these things have been escapes for her. At least that is the way I view them. She gravitates toward them because they don’t involve any frustration for her. They are simple pleasures.

I have taken over almost all of her financial things. I had already before she had AD taken care of family trust activity. But now I have her American Express bill emailed to me and make the payment through her account. She doesn’t even know how much her bill is. She doesn’t see it. This morning she asked me if I knew where she keeps our envelopes. She wanted to mail a check to someone. She said she normally would have done an online bill pay from her checking account, but she can’t remember how to do that. I first found the envelopes for her. Then I told her I would be glad to help her with online bill pay. She indicated she didn’t want me to do that. I said, And I don’t want to take over everything for you.” She acknowledged her own need to continue doing as much as she can.

She did say there are somethings for which she would like help. I suggested we change our daily routine a bit. From now on we will go to lunch. Then we will focus on things that she needs help with. Then I will go to Dad’s. She seemed to like or accept that suggestion. So this is yet another step along a very long journey. I still think most people would not know what she is going through, but for someone as close as I am to her, it is a continuous series of incidents that are reminders that she has AD and it is getting worse.

The State of Our Lives

Yesterday Andy Griffith died. His passing took both Kate and me back. His show was in its heyday when I was a student at UW in Madison. We always love him and the characters around him. The way I expressed it to Kate he was a “marker” in our lives, one of those people and events that were significant to us.

At the moment we are in a period where we have both settled into recognition of Kate’s condition and do not belabor it, but it isn’t that we don’t think about it. In fact, it still hangs over everything we do. Not a day goes by without multiple times thinking in some way of Kate’s diagnosis. For me, in particular, I find myself both remembering and forgetting (or acting as though I have forgotten). Let me clarify this last comment. Although I know she can’t remember things, I find myself asking her things that require greater memory than she has. For example, yesterday she couldn’t find a pair of shoes she wears when she is working in the yard. This morning I noticed that she was wearing them and said, “I see you found your shoes, where were they?” She answered, “I don’t remember.” I don’t believe that this comment alone creates a problem, but it occurs so often that I feel it is a constant reminder to both of us that she is losing her memory. It is amazing how many times we ask these kinds of questions in the course of a normal day. “How did you . . .” “What did you do . . .” “Why did you . . .”

On Tuesday of this week I received a call from an attorney that State Farm has provided for us in a lawsuit against us for an accident that I had coming back from Memphis in March 2009. I am to give my deposition on July 13, and the attorney said that the plaintiff’s attorney had requested that Kate be deposed as well. I said ok somewhat hesitantly. After hanging up, I had 2 concerns. First, is that Kate is uncomfortable being pressed to explain herself. For example, when I ask her how she solved a computer problem, she will usually say, “Don’t ask me” which I take to mean it is stressful for her to try to explain, and she probably is not able to do so. The result is that I try not to press her to explain anything. My earlier comments above acknowledge that I often fail at this. She is quick to tell me when I am pressing her, and then I stop quickly.

The second concern is that in her attempt to explain herself, she gets confused and gives inconsistent information. I was afraid that the plaintiff’s attorney would take advantage of this. That led to my talking with Kate about the attorney’s request. She suggested I tell the attorney about her Alzheimer’s and that we could provide a doctor’s statement if needed. I called the attorney back, and he accepted my suggestion although he did indicate that we may need the doctor’s statement.

One question one might ask is, “Is her condition getting noticeably worse?” The answer is it depends on the period of time with which you compare her present condition. I would say she is noticeably worse than she was a year and a half ago when we got the diagnosis. I can’t say that I notice a difference in the past 6 months. What I do see is her working harder to minimize her frustrations. For example, she had agreed to solicit our neighbors for contributions to the Alzheimer’s Association. She hasn’t done it and told me yesterday that she would need my help to get her started or she would never do it. I also interpret her growing interest in tending to her plants relates to the fact they don’t talk back, ask her questions, or provide other frustrations. She is simply able to do what she can. If she does less than she intended, there are no great negative consequences. The only critical thing is to keep everything watered.

Spending Money

I have always been very careful about spending money. Since Kate’s diagnosis, I have found myself changing somewhat. I now attach a higher priority on making the most of my time with her. Sometimes I wonder what I will wish I had done when I had the chance. For that reason, I have found myself spending more money on experiences this year than in the past. For example, I just arranged for a trip to NYC in Dec at a B&B that sounds appealing. New York has always been a special place for us. We especially enjoy it around Christmas. We have traveled there more than any other single place. I will look forward to this trip knowing that the number of trips we make there will be fewer in the years ahead.

The other day I did something I wish I had not done. We were in Niagara-on-the-Lake, Ontario, and I had not arranged for international calling. That means that calling back to the US is more expensive than it would be otherwise. Kate made a phone call to her friend, Janice. Afterward I reminded her about the expense of international calling. She felt horrible. I tried to tell her it wasn’t that important but I shouldn’t have said anything. Being careful with spending is still a part of me. That is especially silly since the call could not have been more than a few dollars. I’m still learning to adapt.

Funny Things Happening in the Brain

Last night after we got back from taking Heather to the Nashville airport to catch her plane to Lubbock, we sat around and caught up on things we hadn’t been able to do during her visit. Kate asked me if I wanted an “Alzheimer’s Update.” I said that I did. She then told me that her brain had been doing funny things. She couldn’t recall much of the specifics but was able to tell me that it involved seeing places she had been in the distant past. One example she was able to recall was seeing herself going down the stairs into the family room at our first house in Knoxville. She said she was well aware that she wasn’t actually there or actually seeing it but that she would just have a flash of some past memory. We don’t know but tend to think this is in some way connected to Alzheimer’s. I suspect we may learn quite a few other things that we haven’t known before.

She also said she was adapting and thought she was getting along pretty well. She seemed to speak comfortably about it last night although we did not take much time, and I didn’t ask a lot of questions that usually annoy her because it is hard for her to answer. My dad has similar experiences.

I tend to think she is doing well except when she is under pressure to handle some task. The mother’s family album was one of those things. She is trying to finish up two PEO scholarship applications that are due this Friday. She has indicated any number of times that she is just about finished, but she continues working. I have worked with her a little and can see that she doesn’t follow instructions well. That seems to be particular important when you are completing an application online. She has been quite frustrated which bothers me. I want to help and have done a little, but she really wants to do it herself. I hope that she does not do this next year. This is simply too much.

Adjusting

I just realized this morning that it was 2 months ago on Monday that we got the news of Kate’s diagnosis. The fact that I hadn’t specifically realized it when I wrote my thoughts on Monday underscores the fact that we are making the adjustment.