Wednesday, August 05, 2009
feeling burdened
We are supposedly on vacation in North Carolina and John still seems to enjoy being here, though his hiking is really slowing down. I went back home yesterday and will go again tomorrow to deal with work and house matters. I'm worried I should be there today to look for anything in the rewiring that isn't the way I want it. I forgot to check yesterday whether they moved a switch I wanted moved--I know they didn't move another one. The good news is that they are hoping to be done today with the rewiring.
Our son missed his plane home from Spain Saturday and I had a hairraising time getting him scheduled for a flight the next day. But he is now home and with us on vacation. Next step is to get the details worked out to take him to start college at the end of the month.
I went to a Lewy Body support group yesterday, though I didn't stay the whole time because I wanted to get back to North Carolina for dinner. Still, I liked the other people and I talked about how confusing it has been for me.
Saturday, July 18, 2009
John is home
He has terrible sleep patterns and has not been willing to try to change them. In recently months he usually falls asleep and sleeps most of the night in an office chair in front of his computer. Then he goes to bed for a few hours around 7 am. He has a chair that reclines and has a footstool and two different laptops but he likes to use the laptop in the privacy of his downstairs office. Last night he pinched a nerve in his arm and today has only partial use of his left dominant hand. I had to help him get dressed. So I expected that he would be at his worst when he got home from holding it together for a trip but he has ended up even worse.
When he is around me leaving anything hard or complicated for me to deal with, it is hard for me to imagine that he can travel alone. But he can still pull it together when he needs to. And he has lived all his life with making a lot of mistakes because of ADHD and is used to it. I discovered he hadn't put the registration paper in his car when it came in April (though he put the sticker on his license plate). He commented that he had made that mistake before.
Today's last straw was when he reported "we have a big problem," the sewer pipe had backed up into our downstairs bathroom. Guess who cleaned that up.
Monday, June 01, 2009
vacation on Cape Cod
Sunday, May 24, 2009
John is home
I don't drink so I didn't wish I had gone. But it is hard that he does so well when he travels on his own, then comes home and is negative and confused. On Friday our son had had a driving lesson and done testing to evaluate his ADHD. John got mixed up three times in half an hour about which one our son had gone off to do that evening. And yesterday he was having particular trouble finding the word he wanted and sometimes used the wrong word without realizing it.
I think he is in a stage where he can hold it together when he is doing something he wants to do, but it is tiring so he doesn't do so well when he gets home. It makes sense that he would be awfully tired after a trip but I do get frustrated sometimes that he can't put together that kind of effort when it isn't all about him. On the other hand, I'm glad he is taking responsibility for his own happiness.
I've been deep in house renovations. After they cut a hole in the roof the carpenter and I batted ideas back and forth and ended up more than doubling the size of the dormer. He says I should take the attic room as my bedroom, it is going to be so nice. He also came up with a better idea for how to fix the staircases, which weren't to code. John initially didn't like the tile I had picked for his bathroom, but we went to Lowes to look at other alternatives and he decided he liked it after all when he saw it on a wall from a distance. So many decisions to make.
John and I walked around the badly overgrown lot with a friend who is a professor of horticulture and he told us what to save and what to cut down. I'm not good about asking for help, but I did and he was wonderfully helpful. John is eager to go after the poison ivy--something he has always gotten obsessed about. I think he also took in that our friend liked the house.
Sunday, March 08, 2009
retreat weekend
Wednesday, January 07, 2009
Trip report
We did get a weekend at home after they got home, and then flew nonstop from Atlanta to Rome Dec. 23rd. It was really nice not to change--we got to Rome in time to go to the Vatican Museum the afternoon of the 24th and it wasn't crowded. I felt insecure at first in Rome--it is a scarier city than Berlin. But we had a nice apartment and cooked our own dinners, which reduced the stress. What I loved about Rome is that it was full of pilgrims--I like seeing art in churches where it still has the meaning that was originally intended. John had been to Venice before but not to Rome so he particularly wanted to see Rome.
John not badly thrown off by jet lag. The one time he had real trouble was the day we were leaving Rome. We had gone in separate directions because he wanted to see the Pantheon and our daughter wasn't up for that much walking. He got back to the apartment an hour later than we had planned because of problems that required him to spend a long time in the nearest bathroom he could find.
We flew to Venice on a very cheap Ryan Air flight and there we stayed in a very small hotel with my sisters and their families and my mother. My mother was subdued, but a lot of wine was consumed, which makes me uncomfortable. All 14 of us stayed together only for a few excursions so there weren't any problems with John keeping up. We tended to gather in the hotel breakfast room in the late afternoon and go out to dinner together.
My mother talked some about getting evaluated for Alzheimers, but no one talked with me about John. My family's idea of privacy tends to extend to not talking about what is going on. I focused on our kids--our daughter and I spent a lot of time walking through the city doing a little shopping and stopping to look in every church we came to. John mostly did what he wanted to do, usually with at least one of us along. I was frustrated one time when I went off to do the laundry and when I got back John had gone off to find the internet cafe and hadn't left me a note so I didn't know when he would be back.
I particularly enjoyed a side trip to Padua, where we visited the Scrovegni chapel, with frescoes by Giotto that have recently been restored, and the pigrimage church of St. Anthony. At that and several other churches that have relics where people pray for miracles, I prayed for spiritual healing for John.
We returned to Rome by train to see the scenery and then flew home the next morning. I was pretty tired of organizing by that point. John had problems when he got home (previous post). I'm not sure whether he interprets those as travel becoming a problem for him. With renovating our other house and moving we don't have any big travel plans for next summer.
Blogger is refusing to upload my pictures; I will try again later.
Tuesday, January 06, 2009
Quick update
John has trouble with constipation when traveling. Miralax helps a lot (though he has trouble finding the right balance) but as has happened before things weren't going well when we got home. He felt he was impacted and might have to go to the emergency room, and he couldn't urinate either (that problem came and went). After the last trip I was reading about the issue and found that some people who went to the emergency room were sent home with a bottle of magnesium citrate to drink, so I suggested John try that. It worked in June, and so he was hopeful that it would help him again.
In the morning he sent me out to buy a second bottle, which was probably more than he needed. He was going to take our son to the dentist and back to school, but instead he had to stay home to be close to a bathroom all day. He was still glad to have solved the problem at home.
It meant that my day yesterday was spent driving our daughter to the airport (an hour each way) then driving our son to the dentist and then back to his school (an hour and a half each way). I was tired and what I really wanted was time to unpack and do laundry and it was a strain. Now I miss our kids and today I had a busy day back at work.
I had a sinus infection and cough before the trip but I got a second round of antibiotics before we left and it got better while we were away. But it got worse on the way home--either I caught a new cold from my youngest niece or the dry air of the airplane did in my sinuses. I'm so tired of coughing.
Monday, December 22, 2008
traveling tomorrow
I got my daughter a copy of Don't Sweat the Small Stuff and I read part of it myself and think that I might actually be ready now to listen to those ideas. Our daughter has been happy to help me in the kitchen and that has made me more cheerful about making Christmas happen. We had friends over for dinner last night--goose with sauerkraut and sausage stuffing, mashed cauliflower, green beans, and pumpkin flan.
Tomorrow we leave for three days in Rome, John and I and the kids, and then a week in Venice in a small hotel with my two sisters and their husbands and kids and my mother. I'm at the point where I'm feeling overwhelmed by packing and trying to get ready.
I don't know how much I will be posting during the trip but I am bringing my computer.
Thursday, December 18, 2008
depressed
John seems reasonably content with the way things are now, but I still feel guilty about the things he was complaining about a couple of weeks ago.
I walked through the house we want to move back to with the designer on a bleak day with the heat off and his estimate of what the work will cost is twice what I had thought. Not impossible, as the house we are currently in is the more valuable one (both bigger and in a prime location), but I thought I had all the money I needed lined up and I wouldn't have to worry about that and it isn't looking that way.
I continue to hear more discouraging news about the program I run at work. My job is secure, but what I've built is not.
We are going away Dec. 23rd on another big trip. I'm trying to keep track of what needs to be done. The first few days it will just be John and I and our kids, but much of the time we will be with my sisters, their husbands and kids, and my mother. I always feel torn between being myself and fitting in and I also wonder how they will react to where John is now.
Our daughter is discouraged after a tough semester at school.
I'm still not fully recovered from my sinus infection--now I'm having coughing fits. I haven't been able to do my regular exercise. And the antibiotic has thrown off my digestive system a bit.
People tell me to take things a day at a time and I just feel like a failure because I don't know how to do that. Somebody has to plan. I am too uptight about making mistakes, but I can't change that, except very very slowly.
Thursday, December 04, 2008
travel
John did have a good time in New York and reports that his travel went smoothly. He doesn't seem too exhausted--he got to a massage appointment today. And he has even been acknowledging the strain on me of all the driving.
Sunday, November 30, 2008
back from our trip
Friday, November 28, 2008
Thanksgiving
Wednesday, November 26, 2008
where we are
If anything, I would say that John is somewhat improved from June, due to Aricept (and more recently he is also taking coconut oil). For a while he was losing insight into his condition, but he has gotten it back. He doesn't want to just be taken care of, he wants to still have a partnership relationship with me.
For a while I resented so much having to do tasks we had formerly shared, such as financial and travel planning and home repairs, that I felt it wasn't a partnership any more. I also resented that he wasn't trying harder to do what he could to improve his quality of life, such as more exercise. I'm working my way through to a better place on that, where I can accept a rebalancing of the relationship. He's volunteering to do some things that are hard for me to get done because I am still working, such as picking up our son at school (though this vacation he said he would do it but then was behind in clearing up his stuff to make room for company coming for dinner and so I had to go pick up P).
John complains that I don't treat him as a partner any more. How can we see ourselves still in a partnership? He has started to do more of some things he can still do, but as soon as it gets beyond his routine he does have trouble getting things done. Can he still give me emotional support? I'm not sure, but he wants to try. It gets tricky when what I am upset about is our future together. But he has always tended to leave me to do the emotional work of the relationship so I do feel he would like me to work out things emotionally for both of us. Sometimes I resent that, but it does mean that he respects my emotional struggles (and he is used to my not accepting things without a struggle).
We are off today to the coast south of Charleston to a retreat center for the Thanksgiving long weekend--John and I, our two kids, and our daughter's boyfriend. This retreat center has lodge rooms, but they also have very low cost accomodations for their Thanksgiving retreat in the cabins used for their summer camp and nature education program for kids. So we will have our own cabin--one big room with five bunk beds and two bathrooms. We will walk on the beach and eat in a communal dining room and I hope to get in some long bike rides. I'm going to take my laptop and I think there is internet access somewhere but I may not post.
Sunday, November 16, 2008
back from an unexpected trip
I suspect that my decision to make the trip shows that I'm learning to be a caregiver. E. was very relieved to get to relax and have her mommy take care of her for a couple of days. By last night her fever was gone and she was feeling somewhat better--it had turned into just a bad cold.
John comes home from Texas tonight. When I called him Friday he sounded somewhat disoriented, but it was apparently because he had just woken up. I hope his travel goes as smoothly as mine did today (mine didn't go so smoothly on Friday--a 2 hours wait on the runway).
Saturday, November 08, 2008
John's travels
I'm a little mindboggled that he hadn't made arrangements in advance with the people he wants to see. I don't know how much it is that I've always been the one who needs to have things organized in advance and how much it reflects his difficulty now with getting things done. "Has John always been this way?" is a question that confuses me so much now.
Cell phones help--I don't need an itinerary in order to reach him. Next I need to reset his cell phone voicemail password (which he has forgotten) so he can listen to messages.

