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Various Signs of Alzheimer’s

At 8:20 this morning, Kate walked into the family room dressed for working in the yard and said sternly (as if in a huff), “”I’m going outside. If I’m not ready when you need to go (to church) then go ahead without me.” Thirty minutes before I wanted to leave, I went outside to let her know how much time she had. When she came inside, she picked up her clothes on our bed and said, “I put these here so you would know that I had picked out the clothes for church.” When it was time to leave, I went to her bathroom to check on her. She spoke rather harshly and told me to leave her alone. I heard her ask, “”Where’s my makeup?” In a few minutes she came out and indicated she was ready. Then she said that she didn’t have any make up on except for her powder.

For the third time in as many weeks, she attended my Sunday school class. I showed two videos. One was a segment from 60 Minutes that featured Mercy Ships. Then I showed one about the work of Samaritan’s Purse in Sudan where they are helping to provide clean water. After the class Kate mentioned two times how good the class was. She really liked it.

We went to the worship service in which one of our young associate pastors preached. This was his last Sunday before leaving for Louisiana where he is assuming the position of head pastor in a Presbyterian church there. He did a very nice job. Kate’s assessment of him was glowing. She said she thought he was the best preacher we have ever had. This positive reaction to people is not new and is what I sometimes describe as a childlike response. She just seems to be very impressed with other people’s skills.

Finally, we went to lunch at Chalupes. She raved about the food and the consistency from visit to visit.

I take both the huffy emotional behavior with me and the positive reaction to my lesson, Jonathan, and her lunch as a function of her Alzheimer’s. She wasn’t this way before.

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Wearing the “Right” Clothes

We have a continuing problem with clothes. As I have mentioned before, I made a significant addition to her wardrobe in February. At that time I was trying to make sure that she has clothes appropriate to wear to some of the foundation receptions and especially a board retreat in Asheville. Some of those things she has never worn. Others are misplaced. We bought 5 pair of pants. At least one or two need alterations, but she hasn’t been wearing the others. More recently, we bought 5 pair of pants and an assortment of tops and matching tops. She has worn at least two of these and a couple of the tops but they are being worn infrequently.

Today I noticed she was wearing an older outfit to a funeral. I was also aware that this is an outfit she is wearing quite frequently. I waited until after the funeral and after we had eaten lunch. Then I asked about her new clothes and that I noticed she hadn’t worn something new rather than some old. She was offended that I had said anything and indicated that the other clothes were not appropriate. When we arrived home, she apologized for getting angry with me. I think this is very hard for her and must not forget that, but I need to figure out a way to make sure she is dressed appropriately.

We had another of those situations in which she fakes her way through a conversation. We ran into a neighbor that she would have recognized in the past. When I asked her if she remembered the person, she said she had no idea. I said, “Well, you faked it well.” She indicated that she does a lot of that.

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Cabin Fever

During the past week Kate has expressed concern about being at home all the time. The first sign of this was the conversation we had last week when she wanted to know if she could drive again. Since then she has commented that she needs something more to do than just work in the yard and on jigsaw puzzles on her iPad. This is something that will require more planning on my part.

This morning I woke up at 4:11. I remained in bed until 4:33, but my mind was occupied by two things. First, the nominating committee of the foundation is meeting in the morning to deal with a sticky issue of who will be the chair for the upcoming year. Second, my mind kept wondering how I will work out entertaining Kate if I have more obligations with the foundation, church, and presbytery. I also wonder how I can present supervision of Kate without offending her. She continues to want to display her independence. She doesn’t even want me to help her out of the pool.

I volunteered our participation on the visitation committee at church. We had our first meeting with that group yesterday. They meet twice a month and have a lunch. This should help get her out of the house and have more contact with other people. I also need to work out arrangements to have lunch with people like Angela and Marvin Green. I have also spoken with Kate about volunteer opportunities.

Yesterday I did tell Libby, our housekeeper, about Kate’s Alzheimer’s. I also told her I would want her help in keeping the house in order but that right now Kate wants to handle that herself. The problem, of course, is that she really doesn’t.

I am also thinking about the implications of future travel. I don’t have any plans for travel after our cruise in October. I think I will wait until after the first of the year and see how she is doing. We will continue to make trips to family.

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Sometimes we joke.

This morning I had fixed a glass of ice water and placed it on the kitchen counter where I was preparing to use my computer. Kate came in and put ice in a glass and put it on the island. She also brought in an empty glass and put it on the counter next to the sink. In a few minutes she pointed to my glass and asked if it were hers. I told her it wasn’t, that hers was on the island. Then I said (pointing to the empty glass on the counter next to the sink), “That one is yours too. We both laughed, and she gave me a hug. We both knew that I was joking about her memory in that she had put 2 glasses in the kitchen including one to which she had added ice but had forgotten. All this occurred in a matter of minutes. I then said, “That was mean. I shouldn’t have said that.” She wasn’t at all troubled and said something about liking my humor.

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So this is how it happens.

It has now been 3 years and just over 7 months since Kate’s official diagnosis. She chose not to go public with the news and continues to feel that way. She does not want to be treated like a patient. I have often wondered when the time would come that people would know our secret. I am now beginning to see how this process unfolds.

The very first person I told was our pastor. That was a little over 2 years ago, I believe. I only told him because he had asked me to lunch and during lunch asked me if Kate was all right. When Virginia and Ken were in town for Dad’s 100th birthday, Ken asked if Kate was all right. That prompted me to tell him. Then he told me about his own situation.

I told our children just before we went to New Zealand. I was motivated to do so because I felt Kate was declining more rapidly and felt they should be aware especially if something happened on the trip. After returning from the trip, I told my friends, Tom and Cal. I felt the news would help them understand some of my emails regarding our lifestyle. A few weeks after that I told Ellen. She is Kate’s closest friend. Shortly after I told her, Kate told her as well. That was a big step for her. To date Ellen is the only person she has told except Ken.

A few weeks ago, I told my staff. Once again, I felt it would help them understand my situation and my increasing distance from the business operations of the company. Then I told my dentist whose mother has Alzheimer’s. He told me I should be free to speak with his father should I want to talk with someone who has gone through this experience.

We visited with Scott and Jan Greeley a few weeks ago. Scott asked me if everything was all right health wise. I told him. I didn’t have time to say much but arranged a phone call two days later in which I laid out the whole situation.

Yesterday I had lunch with two friends we know in the arts community. The wife directs a choral group. They asked me to serve on the board as they are planning to retire two years from now and thought I might make a good fit for their needs during this transition time. This is the kind of thing I might normally accept. Instead I felt I had to let them know why I couldn’t accept. They represent the first people I have told who are not family or close friends.

In addition to these people I have told there are a couple of others that know Kate’s diagnosis from being around her. The first is her hairdressernand her daughter. The other is her PEO sisters. One of them has a husband with Alzheimer’s and mentioned to me that she knew what I was going through and would be thinking of me.

I am still not ready to tell everyone, but I am thinking about telling three other friends, Ann and Jeff Davis and Dorothy and Mitch Hinely and two of our friends from our days in Madison. These are longtime friends who live outside Knoxville. I almost called Ann and Jeff today but backed out. I will probably tell all of them very soon.

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Ups and Downs

Kate was down all through lunch. When we came home she immediately lay down in bed. I spent some time on email.

Prior to lunch I had looked for a movie and saw that The Flick was showing Seven Brides for Seven Brothers at 3:00. Kate said she would like to go. It seemed like it would be a good one for her. She loved it. When we were in the car on the way home, she said the movie had really lifted her spirits. It is a rather hokey 1950s movie. I enjoyed it as well from an historical standpoint. I was just pleased that it brought her out of her depression.

We had a couple of memory issues. We saw in the credits that Howard Keel and Jane Powell had starred in the movie. We commented that they were the only people we knew. In fact, Kate had said that the female lead looked like Jane Powell. As we were driving home, she was reading a brochure with information about the movie. She read that Jane Powell was in the movie. When I mentioned its being in the credits, she asked me what part she played. She had completely forgotten in that short time. Another incident occurred that has been common for most or all of the past 3-4 years. We past a pizzeria that I had not known before. When I pointed it out, she said, “Oh, I remember our passing that on the way to the movie.” We had not come that way going to the movie. She commonly says I have told her things that I haven’t told her.

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Problem Finding Clothes

In my earlier post today I neglected to say that we got off on a bad start when Kate was getting ready to go with me to the Y breakfast. She got up early (5:30) and had plenty of time, but she stayed in the bedroom on her computer and or iPad until 30 minutes before our departure time. Then she had a hard time finding clothes to wear including undergarments. This frustrated her but led to her feeling frustrated with her Alzheimer’s symptoms.

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“Imagine how you would feel if you lost your independence.”

This morning before we went to breakfast with my Y group, Kate reminded me that I was going to take her by Walmart to look for plants. Even though I try to be supportive she knows that this is something I would rather not do. She thinks, however, that it is because I don’t want to have plants in the car. While that is a concern, I have worked it out so that we can put them in the trunk and have been doing so since the spring. The real issue is that she keeps buying plants even though we are getting to a season when things will start dying back. I don’t believe I should feel this way and try to hide it, but something shows I am not in full support of her purchases.

At any rate, as we were driving to the breakfast, she asked me if I thought she could drive again. I told her no. She asked me why. I told her because of her judgment and difficulty perceiving things around her. She didn’t say anything else until after leaving Walmart. She thanked me for taking her, and said she felt guilty. I told her I didn’t want her to feel any guilt. I told her I was happy to take her. She then said, “I feel like a child.” When we got home and had unloaded the plants, she said, “Imagine how you would feel if you lost your independence. I feel so trapped.” I tried to sympathize and even offered a time for us to stop and talk. She didn’t want to. I ended up coming to the office.

It is yet another reminder that she does have a grasp of her memory and other abilities and feels frustration over her condition. I can’t imagine fully what it is like to find there are so few things that she can do and how dependent she is on me. I wouldn’t like it either. This is a long road. Fortunately, there are many good things one can do, but the reality is that one loses more and more independence along the way.

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Email to Kevin

Aug 18, 2014, 2:12 PM

Kevin,

I believe the time has come to tell the children about Mom. Heather will not be surprised. Based on the things she has observed on our trip, she will be better able to understand Mom’s behavior. I know you will be able explain things in a way that will be right for them. Please make sure that they know that Mom prefers that people not know.

We loved our trip with Heather. We had only two low points. The first, of course, was the musical on Friday night. The second was this afternoon when Mom was surprised that Heather was not going back to Knoxville with us. The amazing thing was that she was with us the whole time we were talking about and then arranging for her to catch an earlier flight out. She simply didn’t understand. She thought we had discussed her coming to Knoxville and going shopping at Belk’s. She was upset with me for not arranging for her to come to Knoxville. It is sad for me to see this kind of confusion, but this is only the beginning.

Love,

Dad

August 21, 2014, 10:09 PM

Dad,

Thanks for bringing this up. I have had a heavier heart since I read your e-mail and Mom called my cell number early Tuesday not clearly understanding whose number was on the Caller ID. Soon I will discuss with Rachel (I have wanted solo reflection time) and begin preparing for a conversation with our kids. All along part of me has wanted to be more open about what is happening countered by not saying a whole lot. Either way, my goal is to show honor, respect and dignity at all times to the Mom (and Dad) God gave me.

Hopefully I can have this talk with Brian, Heather, and Taylor relatively soon. Then I would like to have a phone call with you afterwards to share. You and I are due for a talk anyway. All three of our children are astute yet Heather is much more verbal. Upon her return Monday she’s said nothing about noticing changes in Mom (to me at least and Rachel hasn’t told me anything she has heard). In fact, she said you and Mom mentioned having Jesse go with the two of you with Ron, Randy and Taylor all to NYC because an extra adult makes sense to look out for all the kids. I comically responded, “If an additional parent needs to go and Taylor is going, what about me?” Heather corrected my grammar (I was right) during our talk and said Mom corrected her grammar while in NYC, expressing a little frustration. My response was, “Nan will always be correcting grammar and has done so with Aunt Jesse and me.”

I will keep you posted before we talk with the kids and then we can find time to speak. You are an inspiration and are giving me a wonderful example of service and sacrifice.

Love, Kevin

August 22, 2014, 8:30 AM

Kevin,

Thank you for your very thoughtful and sensitive response to my email. I knew when I sent it that you would be able to present this to the children in the best way for them and for Mom. I am also touched by your grasp of the sadness that goes along with watching someone you love gradually lose her ability to do everyday things. Since you mentioned the telephone problem, you will also get a picture of the situation with this additional note. She was trying to get our phone messages when she called you. At first I didn’t recognize how much she was struggling to do it. She is also trying to be very independent; so I try not to jump in too quickly when she needs help. (Heather told Mom that I worry about her.) Finally, she gave me the phone and said, “Here, you do it.” This just illustrates some of the little things that she has trouble with. She struggles to do many simple tasks, and it frustrates her. The day we met Heather in Nashville we had lunch with Ann and Jeff Davis. Mom later told me that when Ann asked her where her brother and his wife’s summer cottage is located, she couldn’t remember and said, “I’m not sure. I think California.” That’s a long way from Michigan.

I feel the need to reiterate that despite Mom’s decline we continue to enjoy life. She lovedn our trip with Heather. There are many things she won’t remember, but she will continue to have a special feeling about our time together. While Mom and I rarely talk specifically about her Alzheimer’s, we do mention things (specific instances of memory problems) occasionally and even laugh about them. That was the case yesterday when she received a call from a friend from the Friends of the Symphony. I answered the phone and told Mom who was on the phone. She didn’t remember the person at all, but she carried on a good conversation with her, even expressing enthusiasm upon learning that the person (a widow) has become engaged. When she hung up, she told me she couldn’t remember this person at all. I told her she does a good job faking it and continued to say you do a lot of that. She agreed and laughed.

I will be interested in hearing when you have told the children and how they react. At their ages, I wouldn’t expect anything dramatic from them, but I think it will help them better understand our situation now and in the future.

Love,

Dad

 

 

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Lost While Traveling

Kate and I are in New York City with our granddaughter, Heather. We are having a great time, but I am finding it challenging to keep up with Kate.  I’ve had several scares on the trip.

The first one occurred in the Charlotte airport. Our gate was on a small concourse (12-14 gates). Kate wanted to walk while we waited for plane. Heather and I stayed behind. In about 15-20 minutes, the gate attendant announced that we would start boarding in 10 minutes. We couldn’t see Kate. anywhere. Twice I walked the entire concourse. Then I went to the central terminal and didn’t see her. I returned to the gate to see about paging her. They would only page outside. Finally, she came strolling toward our gate. She had simply walked to someplace outside our concourse and had no sense of time. She said she never felt lost.

The next time was a minor incident at the Empire State Building. Heather and I were on the down escalator when I looked back to see Kate was not with us. I ran up the escalator and found her. She had not seen us get on. She was having the same emotional reaction as we were. Fortunately, this was just a moment.

The last incident as we neared the end of a tour of Rockefeller Center. We lost her when the group went inside, and she didn’t follow. The big problem was that we didn’t miss her for another 15 minutes when the tour ended. I received a telephone call from a Missouri number. The tour was just ending, and I didn’t answer because I thought it was a wrong number. Then I saw that I had a message and called the number. It was Kate. She had borrowed a phone and said that she was at the statue of Prometheus. She had been helped by an employee.  I tried to keep my cool but was in quite a panic. The good thing is that she can still remember my phone number and didn’t hesitate to ask someone about using his phone.