Being More Open

For a long time I have kept Kate’s diagnosis a secret from all but our pastor. Before we went to New Zealand, I told the children. In May I told two of my email buddies and and Kate’s best friend, Ellen. As mentioned in earlier posts, I had been debating on telling the staff. Last week I told someone we met at Chautauqua two years ago. We enjoyed our conversations and have talked about getting together again. In fact, we have now arranged to meet in NYC when we go there to catch our ship for New England and Canada the first of October.

Finally, I decided to tell the staff on last Wednesday. They were just finishing their morning conversation upon arriving for work. I went in and asked if we could chat a moment. They quickly sensed it wasn’t an ordinary conversation. As I started to tell them about Kate, I choked up. It took me some time to gain control of myself but surprised myself by being so emotional about this. I never expected to react this way. After all, we have dealt with this for 3 ½ years. There is a common pattern here. When our pastor asked me if Kate were all right, I immediately choked up and had to gather my composure before answering him. When Ken asked me the same question, I choked up. I guess it should be no surprise that I did the same with the staff. The reality is that Kate’s illness has not only introduced stress for her, but it has done the same for me. In particular, I think that not talking about it is a little like people say. Things get bottled up inside and finally express themselves at some point. All-in-all I am glad that I have now told a few people about Kate. It should come more easily in the future although I want to be careful that she is not aware that everyone knows. Right now I am wondering about telling Scott and Jan Greeley. We are planning a visit to their home this coming Wednesday.

Kate continues to adjust rather well from a psychological standpoint. She doesn’t typically convey any sense of frustration or depression. It is only in moments when she has trouble with clothes and getting ready to go out that we have a crisis. In that regard, our shopping trip for casual clothes this past week worked wonders. She was excited about what she got – about 5 pair of pants, at least that many tops, and a pair of shoes. I feel good that she has a variety of things to wear that fit and that she likes. That should make dressing much smoother in the months ahead.

She continues to express positively in many situations. For example, I have gotten used to her saying many things are “perfect.” She was enthusiastic about her lunch at today. The other night at Chalupas she couldn’t say enough good things about her cheese quesadilla and her cheese burrito. I spoke with Kevin the other night after she was in bed, but I turned on the speaker. After we hung up, she said, “Kevin is so smart.” She expressed great satisfaction in the way he was handling his work. She is so proud. I love this adjustment to things. It is not universal, but it is very common.

A week ago, today Kate had the bad experience with one of our former associate pastors. This morning she expressed an interest in going back to his church. We went, and she had a better experience. She exercised a little initiative when she told she wasn’t going to leave without a hug. He delivered. I don’t think she actually forgot about last week’s experience, but I do think it faded into the background so that it didn’t bother her in a way that it might have done if she did not have Alzheimer’s.

Mini-Crisis

Although Ellen was surprised about Kate’s diagnosis, she did say that looking back she could see signs. She is now seeing more signs. Yesterday, she came by to pick up Kate for a visitation of a friend who died last week. Kate was not ready when she arrived. I invited her in. Kate was in something of a mild panic over not being able to find any slacks that fit her. A couple of times she called to me for help. She was also making noises that have become commonplace. It is hard to describe. They are something of a groan. Before Ellen had arrived, I had mentioned that I thought she was dressed too casually. She changed. She got a jacket that didn’t quite match what she was wearing. I suggested she might try something else. Then she found something that was better but not just right. I let her go out with it.

We agreed that they would call me when they were finished, and I would meet them for dinner. When they got back to the house, we chatted outside on the patio for a few minutes. When Kate went inside to change clothes, Ellen told me that the day before, Ellen reminded her that they needed to call me even though they had just done so only minutes before. She said that Kate said, “”My short-term memory is really going.”

The biggest crisis we have had occurred last night. Kate is hosting her PEO meeting this morning. This was a last-minute change because the person who was to host was unable to do it. Kate’s immediate thought when she was asked to do it was the yard. She always wants to put the emphasis on the yard. I’m not saying this is a bad thing, but that she then forgets to do things on the inside of the house that need doing. I tried to encourage her to address some of the things to no avail. The bottom line is that she still did not have everything ready late yesterday afternoon. We went over to Panera’ for a quick dinner. I didn’t notice anything special until we were nearly finished. She had a depressed expression on her face. She would look down and put her hand to her head. My interpretation is that she was thinking about all the things she had to do, how difficult it is for her to do them, and how little time she had. This is something I have observed before. I know that she doesn’t like for me to talk. She just wants to be left on her own to get hold of herself. When I asked if she were ready to leave, she said she needed a little more time to calm down. We took another 5-10 minutes, and she said she was ready.

We had planned to go to Lowe’s for a few more plants, something I thought was crazy since it was about 7:00 pm. I asked her if she wanted to go home first. She said yes. We sat on the love seat in the family room and cuddled without talking. From the time we got up to leave Panera’s she was shaking like she was cold. This seemed to ease after we sat for a while at home. She said she was ready to go to Lowe’s.

When we got there, she was shivering and wandered down the aisles looking for plants. When she picked up a plant that was quite different from what she had said she wanted, I told her this was not like what she had said she wanted. She broke into tears and said, “”There’s not going to be anything left that I can do.” I held her a few moments. Then she continued to look for plants even though she was still continuing to cry.

At this point it was clear to me that she is frightened about what is happening to her and what still lies ahead. In the past few months, it had seemed to me that she had entered a phase that was a little more like people are referring to when they say, “At least she doesn’t know.” I have been adamant about saying that Alzheimer’s patients do in fact know for a long time before they don’t know. I was beginning to think that Kate was getting to that point.

It is also clear that Kate believes she is not as far along as she is, but she is aware of her increasing deterioration in memory and function.

So how do feel this morning. Not good. I feel a little tense. I feel as though my heart is beating faster than it usually does. It tears me up to see her go through this. If only there were some way to avoid going through this. I know there are harder days ahead. I am now wondering if the hardest ones are in this phase where the decline is becoming more noticeable, and she has to think about this like someone going to the gas chamber or electric chair. Because I see it as frightening to her, it is frightening to me.

So how are we feeling today?

Today is the 52nd anniversary of our first date and the 51st anniversary of our engagement. We normally do more reflecting on those occasions than we are today. Perhaps I should say that we have acknowledged the occasions; however, our mood is somber rather than joyous. Kate continues to be down as a result of her accident. She said she was feeling better this morning. Then we received a call from the State Farm adjuster who asked questions about the accident. I still hadn’t been able to learn who has(d) our car.

While at lunch I got a call from the officer who was at the scene of the accident. She gave me the correct name, address, and phone number of the garage that was holding the car. I have now arranged for it to be towed to the same body shop that has previously done work for us. All this activity has brought back Kate’s feelings of inadequacy.

On top of the accident, Kate has left her purse with her cell phone at 2 different restaurants over the weekend. The first was on Saturday. We had lunch near my office. We realized sometime later than she did not have her cell phone but couldn’t figure out where it might be. At almost 3:00 am Sunday morning, I got a text message saying it had been found at deli where we had had lunch. After church on Sunday we went by to pick it up.

That afternoon we attended a Christmas concert given by the Nashville Symphony. We went with a group of Kate’s PEO sisters and some spouses. After the concert we went to dinner.

On Monday we realized that Kate’s phone was missing. I called it a number of times while I looked in the car, in her closet, in our bedroom as well as other bedrooms in the house. We simply didn’t know where it was until I received a call yesterday (Wednesday) afternoon. It was the manager of the restaurant where we had dinner saying she had the purse and phone. I told her we would come out today to get it. That took us to there for lunch, and we recovered the missing items. I have needed to watch for Kate’s purse for a long time, but it just isn’t in my sphere of concern. I need to change and am committed to doing so.

Now the real issue – how am I doing? I would say that I am anxious. Seeing the decline in Kate saddens me. It makes me wonder how long we have before it is clear to everyone that she has Alzheimer’s. Already it has seriously affected our conversations. She is unable to express much interest, only toleration, for things I have to say. Often, it is obvious that she doesn’t want to go on with a conversation. We connect best when we reminisce about the experiences we have over our years together. We both enjoyed reflecting on the people we have known, the places we have been, etc. It is difficult to engage in much other conversation. I am beginning to accept longer periods of silence which is something that a person with my personality has trouble with.

Turning Point

On Sunday Kate went to the church library while I went to my SS class. After class I went to pick her up for the worship service. When we began to walk to the sanctuary, I could tell Kate was down and not so interested in going to church. I asked if she would like to skip today and go directly to lunch. She said, “Yes” and breathed a sigh of relief.

On the way to lunch, I told her I would not get her into a discussion but I wanted her to know that I saw her frustration and recognized that she doesn’t like to talk about her problem(s) but that I also felt I had to say I want to help her. She acknowledged that I was right and said, “I am feeling more frustration.” We didn’t discuss anything more, but I did ask her if she felt we were at the time to tell the children. She gave a strong no.

Yesterday afternoon I dropped by the church to pick up a DVD from one of our church staff. I saw several people and one of our associate pastors, invited me into her office. She offered to help me in any way if I wanted anything. This was the second time she has offered which confirmed that our senior pastor had told her about Kate. I suspect this means that all of the pastors are aware of the situation. We had a good, though brief, conversation about the situation. I told her I was struggling with whether or not to tell the children and that I thought we were getting to that point even if Kate does not.

After I got home, Kate received a phone call from her hairdresser who said she had left a message that she could take Kate for a 3:30 appointment. Kate had not checked messages; so she didn’t know. It was 3:40; so I offered to take her to the appointment. After picking her up, she volunteered that she thought she had reached a new level. I told her I agreed. She noted that it was not a dramatic, but a gradual change that has occurred. I agreed with that.

I have been increasingly worried about her driving. After picking her up, I had to leave for a meeting at a law firm at 5:30. She told me she planned to go to a Mexican restaurant near our house for dinner and leave at the same time I did. I told her I would feel better if she went to Panera. It’s even closer. She suggested she would be all right.

When I got out of my meeting, I looked at my phone and saw that I had a couple of voicemails, one of which was from Kate. I quickly listened to it. She told me she was back home and all right. Then she conveyed information that let me know she had been in an accident. It turns out that she was presuming that I had listened to an earlier message from a number I did not recognize. That was a call from the police officer who was at the scene, gave her a ticket for running a red light, and took her home.

Calling for Patience

I am really running up against Kate’s thinking I am always after her about something she has done wrong. Earlier today I said, “Uh Oh” about something I had forgotten. She jumped. She knew I was calling her down about something. That wasn’t it at all. I asked if she thought I was getting on her a lot. She said yes.

That coupled with my stronger than intended (or perceived) comment about our patio furniture last week has me trying to be exceedingly careful about what I say. The biggest difficulty I am having is with the shrubbery around the house. She loves to prune and pull leaves off the shrubs. She believes, and I agree, that it has long term benefits by enabling light to get into the deeper parts of the shrubs so they will fill out. The problem is that she has denuded most of the shrubbery in the back yard just when we are getting ready (in 2 weeks) to have almost 100 people over for Dad’s 100th birthday party. She thinks she is getting it looking good, but it looks worse all the time. It looked good before she started.

The other thing is that she rarely cleans up the mess. She leaves branches and leaves on the walks around the house and in the yard and in the driveway. The only time it gets cleaned up is the day the lawn person comes to mow. Then immediately it is a mess again. The walkway from the spa to the side of the house has been covered with debris for 2 weeks. I have said something to her a couple of times. The last time she took offense. I have decided to just let it go. We’ll just have to do some last-minute work before the party. Then it will be a mess again.

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.

So how am I feeling?

A couple of days ago I had the thought that much of what I report is simply a description of what Kate or my dad are doing to give a picture of their present state. I should also be clear about how I feel about things and also how both Kate and my dad are feeling.

My general impression is that my own feelings move up and down depending on specific things and events surrounding Kate and Dad. For example, last Monday when Kate told me that she had gotten lost when she tried to walk to our neighbor’s house, I felt sad for her. It gives me pain to see her hurting, and she hurts when she sees how AD is affecting her. Similarly, we went to a local heater Saturday night. She didn’t applaud once during the entire performance and by the expressions on her face, I could tell she was not enjoying herself. I, on the other hand, felt the performances of the actors was terrific. They danced well, sang well, etc. I can’t say that I loved the musical itself but did enjoy the evening. While we were there I was feeling that she was letting her own judgment of the musical influence here judgment of the performers; so she wouldn’t applaud. When we left, I asked her about that. She told me that she was unable to follow it. I am sure that part of that related to not being able to understand much of the words. That may have related to the fact that the band was directly in front of us. I also think they simply played too loud and overrode the singers. At any rate, the moment she said she was unable to follow it, my feelings changed. Then I felt sad for her. It also makes me sad because I know that there will be many other occasions like this in the future.

As for my feelings about Dad, I have been discouraged about his progress since his fall a little over 2 weeks ago. I was particularly low one day last week when I entered the dining room to see him with his head and arms down on the table sound asleep. Besides that he has been more confused and much more like the other dementia patients at Mountain Valley. He still has moments of clarity, and I am hopeful that he will rally as his birthday approaches.

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.

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.