Event planning

As a caregiver, I sometimes feel that I am an event planner. As we begin this new year, I have been reflecting on ways to address Kate’s boredom. That has led me to take several steps this week. One of our church friends who has been in a memory care unit for the past 2-3 years had a birthday earlier this week. We have not been to see her in quite a while because I was concerned about how Kate would react knowing that she (Kate) is traveling the same journey as our friend. The visit went very well. Kate made no mention of any reaction to her condition. She had done so on the previous visit, but she hadn’t given any sign of being disturbed by how she was doing. This time she didn’t say anything except in response to my comment about being glad that we made the visit.

The next day we visited two of my Sunday school class members who have not been able to attend for as long as three years. Since our class disbanded in December, I wanted to deliver a couple of remembrances for each of them. One was a list of those who were members of the class when we ended (both those who were active and inactive) along with an acrylic square with the person’s name, the class name, and the name of our church on it. The other was a list of all the deceased members of the class that I a aware of. It totals 95. I am sure there are some that I have missed. I thought it might be a good outing for Kate to go with me. When I asked, she gladly accepted. We had an hour-long visit with one of the members. She is 93 and in far better shape than I realized. The other visit was much shorter. This person is also in a memory unit. She knew us the last time we visited six months or so ago. She did not this time. She was quite confused. We left as they were preparing for dinner. Once again, Kate made no comment that would indicate this was a problem for her. I was relieved. It makes me think that we may be able to do it again though I am going to wait a while.

There are still three other class members I need to visit. I’ll try to do that soon
I have also made plans for us to attend the last performance of Ringling Brothers circus when it is here next week. We are taking a church secretary and her daughter who have often looked after Kate’s plants while we are traveling. In addition, I have booked a hotel room in Asheville for Memorial Day weekend. This coincides with our 54th anniversary and is the time we usually attend Asheville. Our church choir is having a fundraiser on February 10. It will be a Italian dinner with music and a silent auction. I’ve put that on our calendar. The next evening Renee Fleming will give a concert  in Nashville. I am planning to get tickets to that event today or tomorrow. I have already contacted our friends, the Greeleys, in Nashville to see if they would like to join us or a least get together earlier in the day for lunch.

Yesterday I also called someone at the Alzheimer’s Association. I have spoken with her before about locating a support group for people with dementia (PWD). She still doesn’t know of anything but expressed a willingness to help me put one together. After speaking with her, I called a local senior center where caregivers can get a break and/or support. I thought maybe they might have something for PWD as well. It turns out that they do. They have some activities for PWD while the caregivers are in a support group. I spoke with the director who sent me a calendar with their activities. She invited me to drop by at any time just to look around. They have a café where caregivers and their loved ones can relax. I noticed on their calendar that they have a support group for caregivers and care receivers with early onset dementia. It meets the first and third Tuesday of each month. This may be our best bet yet. I am eager to check it out.

Couldn’t Sleep

Kate and I got to bed early last night (8:45). I knew I would wake up early. I just didn’t know it would be 3:30. I tried to get back to sleep but my mind kept thinking about Kate’s condition and the problem of her clothes and getting ready to go places. It makes me think that next summer life will be different for us. Since her diagnosis January 21, 2011, I have wondered how much time we have left when we can live a reasonably normal life. I am now seeing signs of the beginning of the end. I must admit that it frightens me.

We went in the pool around 6:30 last night. As we talked, she mentioned wanting to go to Ireland. We discussed doing that in early June 2015. Reflecting on that now, I am not at all sure that will work. If we go with a group, we will face the problem of needing to meet daily schedules that are likely to cause more panic attacks for her. If we go on our own, we face the challenges of travel from one location to another as I don’t think we can find a single location that will let us take day trips to all the places we would want to see. Being realistic, of course, it would be another trip like New Zealand in that we would go without any intention of seeing or doing everything. We could just find a place and stay there. I will do my research and come up with something.

We have often talked about staying at Chautauqua for two weeks rather than just one. Next summer could be the time. I had better look into that soon in order to get the accommodations.

I finally got up at 4:30. I figured that I could accomplish something rather than just lying in bed. It is now 5:05; so it is not far different from a rather normal waking time for me. I will probably shave and eat breakfast and then go for a walk around 6:00. That will still give me time to read the paper before we go to church.

Back Home and Taking Stock

We arrived back home from our trip to New Zealand on Thursday night, March 12. It was a truly fantastic trip, everything I had hoped it would be and more. Here are a few summary observations that are relevant to how Kate did on the trip and the state of things today.

Besides simply making the observation that the trip went well, I need to say that my guiding assumptions for the trip turned out to be correct. I deliberately chose for us to do the trip on our own rather than going with a group like Overseas Adventure Travel. I did this based on the fact that I felt under a good bit of pressure on our last trip with OAT to South America. There were so many times each day that we had to meet the group at a specific time that it put undue pressure on me to see that Kate was ready. That, in turn, put pressure on her that she does not like. Then we are both uncomfortable.

Second, I decided that we would go without any rigid plans other than the places we would visit and the lodging. I felt that we would do it in a leisurely way without worrying about trying to do everything. We would simply enjoy what we were able to do, and this is exactly what we did.

These two things made the trip go well. Even so, I felt a good bit of pressure during the entire trip. Prior to this trip I thought this might be the last trip of this type and duration. I am convinced of this now. It is simply too stressful for both of us. I think I will focus on more cruises in the future.

I am thinking this in large measure because of issues surrounding packing and unpacking her suitcase. This has been a problem for me on each of the recent occasions we have traveled. It is hard (no impossible) for her to plan what she needs to take with her. It seems she invariably doesn’t take enough underwear or socks. On the trip to South America and this one, there were occasions she wore my underwear and socks. When I tried to encourage her to take an ample supply of both of these items before the trip, she was resentful of my trying to tell what she should do when she feels she knows how to handle this kind of matter.

Prior to our packing, I did get her to agree that I would do the packing if she would give me the clothes she was to take. I noticed that she seemed to have a disproportionate number of pants and few socks and undergarments. To the best of my memory, she took 12 pair of slacks, 2 bras, 2-3 pair of panties, and 2-3 pair of socks. I bought her a duffle bag that had a bottom compartment in which I put all the slacks and a few other things likes blouses or jackets. I bought several packing bags in which I put all the others things in the top part of the bag along with 2 pair of shoes.

I did not expect her to remember where the items were, but I did want her to let me get things out for her and put them back. Nevertheless, she would start pulling things out of the suitcase. If she didn’t find what she wanted. she would throw the things on the floor. This meant that I was routinely re-packing. As the trip progressed, I was able to gain some control over this. I was never completely successful. I think this problem would be minimized on a cruise where we would not have to pack and unpack so frequently.

Even though our trip was leisurely there were times we had to be some place. That meant that there were times that I needed to prod her to get her ready. She moves very slowly and doesn’t like me to rush her. That is just as true at home as it is on a trip.

Additionally, there are many things she doesn’t understand. That can lead to problems when you are traveling. For example, in the Auckland airport, they have a line with a camera that takes a picture to match with your picture on your passport. This was new to me as well; so I didn’t realize until it was happening that I was having my picture taken. At any rate, I walked up to a doorway something like the security doorways at airports. There was a mark on the floor prior to getting to the doorway and a sign that asked that people wait behind that line until the person ahead was finished. Kate didn’t see it and walked up right behind me. The camera was “confused because there were two people. I got a message that they couldn’t clear me, that I would have to have special assistance. That meant that I had to go around another way and leave Kate to go through the line by herself. She was confused as to what to do. I had to coach her from the inside of the area where she was going.

The next time we went through equipment like this I was able to get through without any problem, but I think she moved while her picture was being taken; so she had to seek special assistance. Again, that left me on one side while she was on the other. Fortunately, there was visibility; so I could direct her where to go for help.

I also worried that we would get separated in some of the places we visited and knew that she would not know how to tell somebody where she was staying.

Despite these things, we really did have a great time and are looking forward to subsequent trips though they will be easier to manage than this one.

A Follow-up Talk With Kevin

Two days after I talked with the children, Kevin called to talk. He expressed his concern about Kate and his support for me. He wanted to let me know that he did not want to interfere with our own plans for the future, but that he felt given his work, he wanted to do whatever was best in the years ahead. He also sent a letter a few days later expressing the same sentiment. I sent him an email saying that I intended to be very open with Jesse and him and would send a letter to them after our return from New Zealand. In that letter, I want to let them know the situation a little more fully and to suggest that we work together but that I would like to take the lead at this time. My thoughts are that there is no urgency right now. I want them to know that we have talked about a move to a retirement community, probably here in the Knoxville area. I also thought about a move to Texas to be near Kevin should the need arise. At the moment I feel like that is what we will ultimately do although I am uncertain as to the timing. That would depend on my own health.

One other thing to note is that Kate has been especially sensitive lately. She believes that I don’t think she can do anything independently. Most of the time she is expressing herself in a light, almost humorous way, but underlying it, she is feeling torn between wanting my help and wanting to be independent. I frequently hear her say something like, “See I can be observant too,” or “See I can still do things for myself.” I am developing a concern that this may worsen before it improves. I know that eventually she won’t care.

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.

Spending Money

Although we live well, we have never lived beyond our means. The exception would be when I was starting my business. We borrowed money to undertake that adventure. We continue not to spend more than we make, but this year has been different. We are spending more, and my intent is to spend even more in the next year. The reason? I feel that we need to do as many things together as we can before time runs out. This coming week we are going to New York with our oldest grandson, Brian. We are doing it up right by staying at the Marriott Marquis, attending the Cirque du Soleil, Spiderman, and Blue Man Group. I have already booked a B&B in New York for a week in December for a special trip that I am considering the first part of our 50th anniversary celebration. On top of that I am going to book a trip to the Galapagos for February or March, 2013.