It’s the little things.

In an earlier post I mentioned that it’s the decline in Kate’s short-term memory that seems to be most obvious change that is occurring. That is what will finally cause her friends and family to suspect dementia. Here are several recent examples.

1. I just arrived home (10:20) from getting to the hospital at 4:00 this morning after Dad took a fall around 3:00 a.m. She was working on something for PEO and didn’t even ask about Dad. I think she remembered that he had had a fall, but I dont think it was sufficiently present in her mind to automatically ask how he was doing.

2. When I drove up to the house, I saw her glass of iced tea at the curb in front of the house near the mailbox. No doubt she had been doing some pruning around the shrubs and put her tea down. Then she finished without remembering that she had put it down.

3. Last night she said she had lost the power cord to her computer. I walked into her office where I had seen her using the computer yesterday afternoon. The power cord was right by the chair. This is an interesting symptom because it is not just forgetting where she left the cord or where she last used it, but she also has trouble focusing on things when she is looking for them. I am remembering my recent participation in a virtual dementia experience in which our eyesight was diminished with dark light and goggles. I simply didn’t see things that I would have seen otherwise.

4. On Monday of this week I did a little trimming of some shrubs that Kate had asked me to trim. As I was doing so, I found some clippers in the space between the shrubs and the house. She had no doubt been using them, put them down, and then forgot them.

5. One morning this week I left for the office while Kate was out on a walk with a neighbor. As I got close to our street, I saw Kate walking by herself in the direction of our street. Later I asked her about that. She gave me a funny look that made me think she didn’t want me to ask. (Incidentally, frequently she doesn’t want me to ask her about something and has developed a short hand way of communicating that. She says DNA (Do Not Ask.). Then she explained that she and the neighbor had finished walking and as she was returning to the house she walked by our street which is almost a half mile from where I saw her. Because she has always been geographically challenged, I fear that this is one of those things that is going to get us in trouble sometime. We have now had a number of mini-crises surrounding this. The first was in Birmingham when she and a friend had gone to a shower for niece. She has had several similar experiences when going to PEO. One of the most dramatic was when we were going to meet our son, Kevin, and his family at the airport a couple of years ago. She was supposed to meet us there. When she hadn’t arrived in a reasonably length of time, I called her. She was in downtown Knoxville and had no idea how to get to the airport. All of us packed into my car and met her so that she could follow us home.

A Better Day

Despite my anxiety for the past week, I have felt better today. That is largely because I finished my Rotary task (calling 25 members to get their pledges of participation in projects for the year), completed the budget for the music club, ordered tickets to The Met for our trip in December, helped Kate order a family album from Creative Memories, called Kate’s cousin who has been in the hospital, and called someone at church to check on flooding in her neighborhood. In addition, we are getting busier at the office. Although we have been making a gradual comeback, we are going to be busy from now up until just before Christmas. When I got to the office this morning, the staff was working out timing for the various projects. For the first time in 2 years, they will not be on furlough. At least through December they will work full time. They have been working only 4 days a week.

Anxiety

One of the things that Barry Peterson touched on his book was the impact of caregiving on the caregiver. I have tended to minimize that, but during the past week or so I have experienced a sense of anxiety. It manifests itself in physical symptoms that have seemed either like a type of indigestion or angina. I have been doing my own self-diagnosis. At least 3 times I have felt it serious enough to take an extra aspirin when feeling symptoms. At other times I have taken Pepcid.

At this moment, I am feeling better. I do have a funny feeling that seems to be located in my esophagus above the level of my heart. Last night when I got into bed, I felt as though my heart rate had increased. I can only describe this as anxiety. I got up, took a Benadryl, ran in place for about 15 minutes, and got back into bed. I went to sleep rather quickly and slept well until Dad called at 4:27 this morning. As he does so often, he didn’t say a word. I would love to watch him when this occurs. What I imagine is that he is holding the phone out in front of him and can’t hear me say hello several times. When I have been with him I notice that he sometimes holds the phone upside down against his ear. Other times he holds the phone up to the side of his head but not over the ear.

This makes 2 days in a row that he has awakened me early. Yesterday morning he called at 3:30 and then again at 3:50. It was very difficult to understand him, but I got the message that he thought this was the end and wanted to say good bye and that he loved me. I never got back to sleep after that. I am getting to the point of debating about whether to tell him not to call unless he has some emergency, but I don’t want to prevent his calling if he really needs something. That does occur sometimes, but most of the time he simply wants to report that they haven’t brought him his breakfast or that nobody is around. I then tell him the reason is that it is the middle of the night and that he should just go back to sleep.

The point of my writing, however, is simply to say that I seem to be experiencing anxiety connected with all the things I have to do. Fortunately, business is better but I do have responsibilities for several other things – our music club, Rotary, the foundation, Sunday School, and another church responsibility I have just accepted. All that and being responsible for Kate and the household things as well as planning for Dad’s birthday party, our trip to NYC and our anniversary trip has made my plate pretty full.

Odds and Ends

Right now I am feeling like there are a number of things that I would like to comment on, but I also don’t feel I have sufficient time to devote to it now. Let’s see what I can do.

Follow up on the iPad. After getting the iPad, Kate spent a good bit of time on it. She was primarily playing free cell. When she got her computer back on Tuesday, she gravitated back to it. She is trying to complete her photographic piece on Brian’s trip to NYC. It is virtually complete, but as is characteristic of her, she can’t let it go. I also noticed the other night as she showed me what she has done that she has some photos out of order in terms of the way she wants to present them. Organizing things like this are a nightmare for her. I have offered to help her, and she has said she wants it but not now. For 3 days now she hasn’t even turned on the iPad.

I am reading Jan’s Story by Barry Peterson, CBS journalist whose wife has early onset Alzheimer’s. I discovered this book when I started looking about AD that I could download from audible.com. It is an interesting account of his experience with his wife and how they tried to adjust to her disease. I am about ¾ through right now and will finish over the weekend. I find it interesting simply because it is another person’s experience with a spouse with AD. I do find, however, that their situation, the way her symptoms occur, and his personality make this a different experience from my own. To be sure, there are commonalities – signs of forgetfulness and attempts to compensate or cover by the person with AD, denial that the person has the disease, etc. Here are a few quick observations. I may give others after finishing the book.

1. As his wife, Jan, goes through initial stages all the way to her being placed in a facility, there are striking symptoms that are serious in the early stages and normal kinds of behavior in the late stages. My observation of Kate is that the only dramatic thing I have been aware of in the earliest stages was her panic over being lost while driving someplace. Otherwise, it seems like she is going through a gradual decline in memory and ability to handle everyday tasks. I was surprised to learn that even when Jan went into a facility, she was able to appear somewhat normal to others apart from her husband. I am assuming that if and when Kate is in a facility, everyone will know of her condition.

2. It is easy to judge other people, but Barry seems to have let Jan live and function on her own a lot longer than I think he should have. I think she was well beyond where Kate is right now when he would travel out of the country leaving her alone. He did have friends come in to check her medications and see how she was doing. Right now I would be concerned about leaving Kate overnight. Of course, it is easy for me to judge since I am virtually retired, and Barry was younger and in the prime of his career.

3. I find his discussions of developing another relationship discomforting. I am aware that this is a topic of discussion among caregivers, but I don’t like to think of my doing this before Kate is gone.

4. The entire story makes me more comfortable keeping Kate’s AD from the world. We still have not told anyone except for our pastor, our attorney, and another attorney with State Farm who is representing me in a lawsuit over an accident from 2009. My reason for this is that if she is able to function well enough that people don’t know what good does it do to tell them. I do still wonder when we will tell the children. At the same time I think the answer is when they start seeing signs of her decline. I also feel like this is in Kate’s best interest. She doesn’t want to be a martyr nor does she want to be a leader in a campaign to promote greater awareness of the disease. She is a more private person. She just one to be a regular person.

Right now I am wondering what she will be like next summer and how our visits with our children and grandchildren will go. This week I booked a house in Jackson Hole where the 3 families will celebrate our 50th wedding anniversary next June. Will the children notice anything after a full week together? We will see.

Always New Frustrations

Thursday afternoon I bought Kate an iPad since her computer is in the shop again, and it seems that her computer is really a lifeline for her. When she is not working on a particular task like photo albums, she likes to play free cell. She also likes to get her email. I keep thinking that an iPad will be easier for her to use since she likes to use the computer in bed which can cause some problems with the connection to the power cord. That is why the computer is in the shop now.

A couple of times today she has had a problem doing simple things on the iPad. She simply can’t remember how to do things that she has learned recently. This goes back to earlier comments that it is the short-term memory that is the greatest problem. I try to help, but she hates to ask for help. She has expressed a lot of frustration today over her inability to do so many normal things.

In this regard, I am now in the planning stages of a family trip next summer to celebrate our 50th anniversary. After much consideration, it looks like we are going to either Jackson Hole or nearer to Yellowstone. It looks like a rather expensive trip between lodging and airfare for all of us, but I feel like this is a must and will be the only time we do anything like this. I am still uncertain of what Kate’s condition will be like after next summer. That is why I have arranged for the Galapagos trip next spring and the summer trip to Yellowstone.

Life after Summer with Grandchildren

This summer was our best with grandchildren. Although we always enjoy having them visit us, for some reason this year seemed to be great in every way. Of course, the trip to NYC with Brian was a highlight, but we also enjoyed the twins as well as Taylor. They overlapped for 3 nights which made all 3 of them happy.

Taylor left a week ago yesterday. The following day I attended a symposium sponsored by the Alzheimer’s Association. Kate had received a brochure about it the weekend before and thought I might be interested in going. The focus was on understanding what life is like from the Alzhheimer’s patient’s point of view. I took her suggestion to mean that she might like me to attend; so I signed up.

Much of the information covered was repetitive, but it was good to hear what is currently going on in the field, medications, etc. The bottom line is that there are still no medications that clearly retard or cure the disease. One of the most interesting aspects of the program was a “virtual tour of Alzheimer’s. It was designed to give us the feeling that a person with AD feels. We put on goggles that blurred our vision, wore shoe inserts that had little prickly points, put us in a darkened room, and gave us quick instructions on tasks we were to do. It was hard to find items, we couldn’t remember the instructions, and general felt foolish and dumb.

That night as we went to dinner Kate asked me about the conference. I told her about the virtual tour, and she acknowledged that it was similar to the way she feels. We continue to see things that indicate the nature of the disease. One is that she doesn’t remember new things very well at all. That means if we decide to do something at one point during the day, she won’t remember it later. For example, we discussed getting a present for Jan Greeley whose birthday is today. They are due to arrive for lunch in the next hour or so. This morning when I mentioned the present for Jan, she had completely forgotten.

So what’s going on?

It has been a busy couple of weeks. Kate and I took Brian to New York July 17-21. We had a week to ourselves, and then we hosted the twins from Memphis. Yesterday afternoon we met Taylor at the airport in Nashville for a week’s stay. The twins are still with us and are actively having a good time. As soon as we got home last night, they played basketball, then took a swim, then watched the Olympics until just after 11:00.

During this same period of time, Dad has been getting along reasonably well. His latest challenge is a skin cancer on his right arm. We went to the dermatologist this week and found out it requires some careful attention. We had several options to choose from and have decided to take off the top crusty layer of the tumor and then go through radiation 3 days a week for several weeks. He is not in any great pain and is not experiencing any special emotional reactions to the procedure. He does continue to talk about his birthday party coming up on Oct. 20. I am feeling the pressure to get things organized, but that will have to await the departure of grandchildren.

In the meantime, Kate has enjoyed herself, but we continue to see signs of her Alzheimer’s. The other day she asked me for the umpteenth time how to view her pictures on her camera. I know she has hated to ask, but she increasingly doesn’t try to fool me about her memory. I am sure she does sometimes and suspect she is becoming more aware of how much help she requires. I really felt sad for her when she asked the most recent time she asked.

Recently she has said, “You’re so good to me.” I have several reactions to her comment. The first is again a sense of sadness for her. Another is one of guilt that I continue to lose patience with her at times.

Last night she asked me how to do something on her camera, and I showed her. Then she said, “You told me that before.” It was something that I didn’t recall her asking about and felt there was no reason for her to know; so I told her. She was so relieved, it was striking to me. I know she hates to encounter one instance after another in which she has asked about something but can’t remember it. I am continually running into numerous instances in which I have told her something, and a short time later she is unable to recall having been told.

This memory problem is an issue for the caregiver in that we frequently talk about events, issues, etc. in everyday conversation. It also limits the amount of conversation.

A Reason for Celebration

I may have mentioned in an earlier post that Kate has worked with PEO on a scholarship program for deserving women. They have concentrated their efforts on women who have been out of school and are now trying to complete their degrees. Most of them are single mothers who are working in low-paying jobs while going to school at night. They also are women who are trying to complete their undergraduate degrees.

At any rate, over the past two years Kate has had some difficulty taking care of the various tasks that have fallen to her. In some instances she has simply not acted to send letters or get information that was needed. This year she has been much better at addressing her responsibilities. I think this is a function of her co-chair’s being out of the country during a significant part of the process. Kate really cares about this program and wanted this year’s applicants to get help from the national office of PEO. The issue this year was that she had to devote so much time to write letters of reference and to complete an online form that was required by the sponsoring PEO Chapter C. She wrote, rewrote, and rewrote again the letters until it was almost too late to submit them.

However, she received two letters from the national office on Tuesday of this week. I had brought in the mail and sorted out hers and mine. I left hers on the island in the kitchen in an obvious place so that she would notice them. I suspected they might be decision letters on their two applicants and that she would do the same and open them quickly. On Thursday morning when she still had not opened the envelopes, I opened them. Each was a letter announcing that one of the applicants had received an award and inclosing a check. In other words, both of the applicants received awards – 1 for $2,200, the other for $1,500. When Kate got up, I told her I had good news. She was thrilled. She had worked hard and was successful in getting her candidates through the process. Once again, it is a good example of how someone with Alzheimer’s can be both successful and unsuccessful. It is simply hard for her to focus on anything even something as important as this was to her.

Last night we went to the Bijou to see Joseph and the Amazing Technicolor Dreamcoat. In the car on the way to the theater we talked about books we were listening to. She is listening to her first Donna Leon Guido Bruneti novel. I have read (listened to) 8 of them and was curious about her reactions. I asked her to tell me something, and she said, “Don’t ask me anything.” It wasn’t said harshly and I never interpreted it that way. What she was really saying was, “I am unable to articulate or express what you want to know. Be patient with me.”

Who is more to blame?

One of the things that is a continuing issue is the attribution of responsibility for things that happen. This is just as true with Dad as it is with Kate. This deserves a word of explanation. This past Sunday we got back home from taking Brian to New York. A simple experience on the subway illustrates the problem. We used Metrocards. When we were going on our first ride, I went through to show Brian and Kate how to slide the card and walk through the turnstile. Then Brian went through. Kate tried twice, and it didn’t work. I immediately thought she had done something wrong, and the expression on my face obviously showed my displeasure and also said something that that had just cost $7.50 for one ride on a $10.00 Metrocard. Later in the trip I made a mistake by directing us to the subway going the wrong direction which led to our having to exit and come through the turnstiles again. In other words, I had just wasted $7.50 by not being more careful.

Experiences like this leave me with a guilty feeling. I know that I should be more understanding because of her Alzheimer’s, but I sometimes act like she can actually help what she is doing. I think I referenced a word that she wished I would never say again – “Remember . . .” Her point was that this reminds her that she can’t remember and I should also remember that she can’t remember.

When someone who relates to another person who has dementia he is continuously face with a judgment of how much responsibility to put on the patient. I have been good at assuming that when Kate leaves the gate to the patio open, fails to lock the sliding glass doors from the house to the patio, or puts dishes in the dishwasher in places that seem inappropriate to me, she does these things because of her Alzheimer’s. In other words, I do not attribute responsibility to her and don’t mention these things to her. While I can’t at the moment think of other good examples, there are many of them that come up throughout a typical day.

My point in this rambling is that the caregiver has the burden of treating the person with the knowledge that he or she can’t help doing what they do. It is better for the patient and for the caregiver. Both parties feel bad when the caregiver emphasizes the disabilities of the patient. This happens most often with my Dad when I ask if he is going to eat something that is on the left side of his plate where he can’t see. He will say, “Where, I don’t see it.” I should know that he can’t see it and simply put the food where he can see it.”

All this reminds me of the expression, “Who’s the crazy one?” when someone behaves like the crazy person is sane. “Who’s the one with the problem– the one who has been diagnosed with Alzheimer’s or the caregiver who acts like he has forgotten that there are things the person with Alzheimer’s can’t do.”

A Couple of Observations

When I got home from visiting Dad tonight, Kate gave me the look that showed she was concerned about my not coming home as early as she had wanted. She did, however, tell me she was glad to see me. We got ready to go out to the spa before having dinner at home when she said, “At least this week, I get to have you all to myself.” Then she very quickly realized that we would have Brian with us. It is another indication of her feeling of insecurity when she doesn’t have me to herself. By the way, I am not bothered by this. I am actually flattered.

There are two other indications of where she is with respect to her memory. Last night we received a text from Rachel with pictures of the children at a Missions baseball game. She indicated that this was the second half of the birthday present that we had given to Taylor in April. I showed her the picture as soon as it came through. Tonight she saw the text on her phone and told me about it. She hadn’t remembered my showing her the picture last night. It was something completely new to her.

The second thing is that I said something to her the other night and then said, “Don’t you remember . . .” She said, “I wish you wouldn’t say that.” I asked what she meant. She clarified that it was the words, “Don’t you remember.” She doesn’t like to be reminded of what she can’t remember. I apologized and said that I try not to do that, but I slip and would work harder.