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Kate’s Changing World

I imagine those who read this blog on a regular basis would say that Kate and I have maintained an active lifestyle throughout the period since her diagnosis. You are right. We are busy. Upon receiving the diagnosis, we made a commitment to do as much as we could with our remaining time. I think we’ve done pretty well. I have become an event planner for our daily lives. That doesn’t mean planning lots of special activities although there have been plenty of those. It means making the everyday activities special. Things like our morning visits to Panera as well as eating out for lunch and dinner have become highlights of every day.

We do live full lives; however, that doesn’t mean that life is the same as it used to be. Even before Kate’s diagnosis, she gave up her most fulfilling activity as our church librarian because the early symptoms were keeping her from performing her duties as she knew they should be done. She had served faithfully for 19 years and had made the library the “go-to place” for Sunday school teachers and children. Her academic credentials (M.A. in English and second Master’s in Library Science) combined with her professional background as an English teacher and school librarian made her a perfect fit for her position at the church. She took great interest in helping everyone who was looking for just the right book(s) for a particular occasion or person. She worked nearly fulltime as a volunteer. Stepping down from this position was a major change in her life.

At the time of Kate’s diagnosis, she was still driving. She continued to drive another two and a half years before having an accident. Until then, she was free to do pretty much what she wanted. She and her friend, Ellen, had lunch together every Monday when I was at Rotary. They also got together at other times during the week and often went shopping together. They shopped for plants. They shopped for clothes. They shopped for knick knacks for their homes.

I know from looking back at my journal that Kate experienced lots of frustrations related to her worsening memory, but there were no outward manifestations that anything was wrong. It was only after three years that Kate told Ellen about her diagnosis. Ellen had not even suspected.

After an auto accident in which she totaled her car, Kate’s world became much smaller. She was now dependent on me to get her where she wanted to go. Of course, she also got around with Ellen, but it wasn’t like having the personal freedom that driving her own car had given her.

She continued to be active in PEO. She attended their monthly meetings, hosted meetings at our house, and occasionally presented the program. She also served on a scholarship committee that had responsibility for interviewing and recommending candidates for scholarships and grants through the national office. She began to forget meetings and found it difficult to fulfill her obligations on the scholarship committee. As her memory worsened, she couldn’t remember the other members. I suspect that she had difficulty participating in the conversations. She no longer wanted to attend and ultimately dropped out.

That is when two of her existing activities came to dominate her life. The first was the yard. She had always enjoyed tending to her plants. Now she could devote more time to that interest. The other was her computer. For a number years she had enjoyed working on photos and had started work on a couple of family albums. She never came close to completing one, but she was very active in picking out and editing photos. Even today, when someone asks her what she is doing, she tells them she is working on her family albums. Like most of us, she also used her computer for emailing.

At some point, I gave her an iPad and introduced her to several jigsaw puzzle apps. Little did I know how important these would become in the years ahead. With the progression of her Alzheimer’s, working on the computer became more difficult. She was frustrated. She stopped checking emails. Gradually, she stopped using the computer.

That left two activities she could do on her own, pruning the shrubbery and working jigsaw puzzles on the iPad. She had no trouble filling an entire day between these two activities. They were things she could do without having to experience the challenges of coordinating with other people. She could work at her own speed, and nobody was telling her what to do.

Her friendship with Ellen was her only close personal relationship. Our children had grown up together in the same neighborhood. Ellen and her husband, Gordon, were our very closest friends in Knoxville. Then in 2013, Gordon died. Two years later in August 2015, Ellen had a stroke while visiting her daughter in Nashville. She has never been able to return and is now in memory care. We try to visit her once a month, but the relationship can’t be the same now.

So Alzheimer’s cost Kate her volunteer job at church. Then she had to give up driving. She lost the ability to use the computer. She lost her best friend to a stroke. Her world has shifted from one of high involvement to only working in the yard and on her iPad.

One of my concerns right now, is that she has been spending less time in the yard than she used to. The weather accounts for part of it, but I think it is more than that. Three years ago, we were visiting Lowe’s two to three times a week for plants. She spent a good bit of her time planting them. Finally, she was running out of places for new ones. She could, however, continue to prune. She started her pruning a year before my dad’s 100th birthday party in October 2013. Gradually that turned into just “pulling leaves.” Right now there are few leaves left on any of our shrubs. That may also play a part in why she is not spending time in the yard. Spring will be here soon. I am eager to see if her interest in the yard will return to the passion it was before. I fear that it won’t. That will leave only her jigsaw puzzles. Everything else she does is dependent on me. She needs me more than ever. Yes, I keep her busy, but there is no denying that her life is dramatically different than it was before Alzheimer’s.

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Working Jigsaw Puzzles at Barnes & Noble (For Hours)

It is 5:06 p.m. We’ve been at Barnes & Nobel for almost three hours. When we got here, I thought we might be here no more than a couple of hours, perhaps less. What is amazing is that as I look across the table at Kate, I see that she is working intently on her iPad. She hasn’t moved since we arrived. She is doing the only thing she does on her iPad, working jigsaw puzzles. Over the past two-to-three weeks, she has spent almost no time in the yard. She must average 6-8 hours a day.

(At this point, she looked at me and gave me the look that says, “It’s time to go.”  We decided to go to the restroom and then to have an early dinner.)

Here’s the rest of the story that started at Barnes & Noble. I was saying that Kate has not been working outside much in the past few weeks. That means her only activity is working jigsaw puzzles on her iPad. Starting as much as a year ago, she began to have some difficulties with the puzzles. This meant she relied on me to straighten things out every time she got in trouble. That has improved substantially in recent weeks. It is nice to report that something is better. I have a tendency to think that everything only gets worse.

My concern now is that if she lost interest in her puzzles, she would be left with nothing. That would be a serious problem. Watching her today gives me renewed hope that she will continue to pursue this activity for the indefinite future.

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Frustration

We are sitting at our usual table at Panera. We arrived early today. Kate was up before I returned home from my walk at 8:00. She was not dressed for church. I reminded her this was church day. She gave me a dirty look and groaned. I hesitated a moment and started to encourage her. Then I decided not to push her. I know she often feels pushed. We decided to come over to Panera for her morning muffin.

She has been trying to work jigsaw puzzles on her iPad, something that has been one of only two things that occupy her time. She has occasionally been frustrated while working the puzzles. I don’t believe it is associated with any difficulty finding and placing the puzzle pieces themselves. Rather, it is that she occasionally hits a “button” that take her to a new screen, and she doesn’t know how to get back to her puzzle. In addition, there are times that the app itself offers an opportunity to do something else. She doesn’t know how to “cancel” and get back to her puzzle.

This morning has been especially frustrating for her. Over a 5-10 minute period, she repeatedly lost her puzzle. Each time I helped her get another one. She did not ask for my help. She simply put the iPad down on the table and, a couple of times, she closed the iPad as though she were ready to go home.

A number of things have happened this week that make me think that Kate is moving closer to another stage of this illness. She hasn’t been staying outside as long, and she hasn’t been working on her iPad as long before wanting to switch to something else. I dread the day that she loses interest in these two activities. They are her life right now and have been for several years.

I should say that last night she turned on her computer for a few minutes. I don’t know what she did, but it wasn’t long.

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It’s cold outside, and Kate’s there.

I arrived home from the Y about 40 minutes ago. When I drove into the garage I noticed that the door to the patio was open. That usually means that Kate is outside tending (pruning) to her plants. Given that the temperature is 32, I thought surely that couldn’t be the case. When I came inside, I called out, “I’m home.” There was no response. I looked around, and she was not there. Then I knew that she must be outside. I went out to the side of the house, and there she was. I told her I was surprised to see her outside. Then I asked if she knew that it was 32 degrees. She said, “Yes.” I asked if she were cold. She told me she wasn’t. She didn’t have a coat on, but she did have a sweatshirt and sweatpants. I did not notice, but she usually wears another sweatshirt and pants under those. I told her I would be in the house. We’ll see how long she stays out. Right now I am not terribly worried about her from a health standpoint. I don’t believe she is at risk of harming herself. It is just a matter of discomfort. In that regard, she seems all right. What I fear is the future. There may be a time when she is doing this kind of thing and not properly dressed for it. Who knows what lies ahead.

Note added at 10:39. Kate came in 10 minutes ago. She said, “You know what? It’s cold out there.” It turns out that she got along well. She said it was only her hands that felt cold. She did have on two sweatshirts but only one pair of sweatpants.

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Still Outside

I have now been home just over 3 ½ hours, and Kate is still outside working. This is obviously something she enjoys immensely because she usually is interested in eating around 11:00. It is almost 2 hours past that time. I am going out to let her know it is time for lunch.

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Always Something New

I just arrived back home from the Y. I usually stop by the office, but today is Martin Luther King’s birthday. Our office and many others are closed. When I arrived home, I looked for Kate in the house. I had seen the garage door to the backyard was open slightly and considered the possibility that she was working in the yard. Though the sun is shining, the temperature is in the lower 40s; so I really thought she would be inside. Once inside, I called to her and got no answer. Then I looked out back and saw that she was on the ground in the flower bed around the fence. I went out to see her. I asked if she were cold. She said she was but it was not too bad. She said she had on two sweatshirts and two pair of pants. I also called attention to the fact that she was wearing 3 baseball caps on her head. She seemed happy as a lark. I made no effort to encourage her to come inside. If she gets cold enough, I know she will come in. Although I can’t imagine deriving the same measure of pleasure from this kind of work, I accept the fact that it is important therapy for her. I reiterate something I have said before, one day I do expect that her pruning activity will be rewarded with new growth. I just fear that it will be too late for her to fully appreciate it.

Yesterday was the warmest day we have had in several weeks. The high was in the 60s. The sun was shining brightly. Kate spent more than 3.5 hours pruning. It was almost 7:00 pm when she came inside. That was almost an hour after dark.

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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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How Things are Going 5 Weeks after Dad’s Death

We just got back from Ellen Seacrest’s house where we had lunch with several other friends. Kate is taking a short nap before we head to a movie; so I thought I might make an observation or two on our current state.

All-in-all I think we are making slow but steady progress in our recovery. Surprisingly, I think Kate is having a harder time adjusting than I. I think that is due mostly to the fact that I have had a number of responsibilities with the  foundation, music club, and Sunday school that have kept me busier. Kate commented yesterday that she is finding herself not having anything to do. We have both talked about pursuing some kind of volunteer work. I have even gotten the name of a contact at one of our hospitals. I will contact her after the first of the year. I mentioned several different things I thought we might do, and working with children was the one Kate liked most.

I notice that Kate is spending much of her time playing Free Cell on her computer. I think that is because so many other things frustrate her. Also the weather has been colder. That makes it more difficult to be outside pruning the plants.

We went to New York last week and had a great time, but we can’t always be doing special things. Beginning now I need to make more effort to see that she is occupied in worthwhile/pleasurable activities. Otherwise, she will just vegetate. She can’t seem to focus on anything for any length of time. She started decorating the house for Christmas. I thought that was a good idea, but she stopped with garlands of greenery thrown on the floor or across the furniture.

Her short term memory is clearly getting worse. I think this is what is going to give her condition away to friends. She is very likely to ask the same question in relatively short time frame. This is beginning to happen a lot.

As we were coming home from the Ellen’s, she said she had talked with a man who told her that his wife “has the same thing that I have. What is that?” I told her it was Alzheimer’s. She, of course, remembered immediately. This is a frequent occurrence. Yesterday she asked me to tell her our passcode to listen to our voicemail. This is something she has been using for several years without a problem. Later in the day she had to ask me again.

I am struggling about telling the children. I want to honor her desire that they not know, but I feel I have benefitted by knowing. It means I make the most of the time we have together. The children don’t stay in as much contact with her. This is not anything that she even realizes, but I believe she would love it if she heard from them more frequently.

Yesterday I had just about made up my mind to tell them before her birthday in January. Today I am more doubtful. I don’t want the grandchildren to know. They might say something to Kate. Then Kate would know that I had betrayed her confidence. As I write this I am feeling like telling them anyway. I have a little time to think and will weigh the pros and cons.

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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.

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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.