John is home

John went to Spain with our son, who is studying abroad there for a month. They traveled together for a few days and then John went to Madrid alone for several days. Going to the Prado was on his life list. He had an international cell phone, and called me for help with several problems. The biggest one was that he missed his plane back from Madrid to Malaga and could only reschedule for four days later. By then he was ready to come home but Delta said the flights were very full so I persuaded him to go see our son in Ronda instead of spending his days trying to stand by for an earlier flight. He's glad he went but was very glad to be 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.

changes

Yesterday I took John to try out a lift recliner, and he liked it. Now I need to find a medical equipment place that is a preferred provider for our health insurance and see if buying one there (with the insurance paying $300 for the mechanism) actually comes out cheaper than buying one from a furniture store. John isn't on Medicare yet, but I did get a message from someone at our insurance that with a letter from the doctor they will cover it.

I assembled a couple of shelf units for Aunt Florence. She is buying specialized things so as to get every possible bit of storage space in her smaller apartment. She wanted John to assemble them for her and he tried the first one and couldn't manage it and asked for my help. I just wanted to get it done today so that I will have as much flexibility as possible tomorrow.

Tomorrow is my birthday and I am trying to think of something special to do for myself. I cooked an early father's day dinner tonight so I can put myself first tomorrow. It is a big change of mindset for me to do something for myself on my birthday instead of expecting my family to do it for me. It feels like going in the right direction, if only I can figure out what I want to do.

antidepressants

I went on Zoloft (actually the generic) a couple of months ago, feeling that I needed help to get through the stress of house renovations and moving. I'm very medication sensitive and I found that 1/2 a 25 mg. tablet daily was plenty, in fact when I went to my gynecologist, who prescribed it, for my annual checkup I complained that I can't cry any more.

She was concerned about my cholesterol numbers. My HDL is always very high--over 80--and my triglycerides were excellent (34), so it isn't clear that I have to worry. But my LDL was up a lot. I had been on vacation and eating less carefully, but my A1c was down slightly at 6.0, which suggests that my diet hasn't gotten worse. I couldn't figure out what had changed, particularly as my LDL had been trending downwards before that. The doctor asked if I was doing less exercise and I am doing less than two years ago, but not less than at the time of the last test. John's experience is that exercise improves triglycerides and HDL, not LDL. I'm pretty careful to avoid transfats.

I'm already taking fish oil, so what to do to bring my LDL down? As I started to look for information on approaches that would fit my way of eating, I discovered scientific papers that say Zoloft raises LDL. I'm going to taper off the Zoloft and see what happens. See if my LDL improves (the doctor wanted another test in 2-3 months) and see how I feel. One source suggests that Celexa might not have the same effect, if I find I need an antidepressant (and it comes in pills than look like they can be split to get the lower doses that work for me). But I'm hoping I can hold on to this stabler place now that I've found it.

doctor's visit

John had a neurologist's visit Thursday. John reported that his balance is worse and we both reported that he is moving slower. He asked about increasing the Sinemet but the doctor said no because the doctor found his muscles not stiff. The doctor seems most worried about falls.

We asked about when the doctor thinks Namenda should be started. He said when the Aricept stops working. What I wonder is whether the Namenda would be any better than the Aricept, which John takes only a half dose of because it causes him balance problems.

John reported that he doesn't get enough air through his nose and needs to breathe through his mouth. The doctor asked about allergy symptoms, but John said it is true even when his nose is not running. The doctor suggested more exercise to strengthen his chest and diaphram muscles. John said he would go back to using our exercise bike. He does take a 1/2 hour walk several times a week, but I don't know how aerobic that is.

After we got back from Massachusetts it was several days before I got John to go visit the other house, and then he didn't say much. The renovations are in the stage where everything is torn out and some of the changes are framed in. I did get him to make a decision about whether he wanted a larger closet or more built in bookshelves. But it feels like he isn't interested, which is hard on me. It is mostly just one more thing than he can deal with--he has trouble getting the necessary things done in a day.

I'm having a tough time because the main part of the budget for the program I run at work just got eliminated. My job is safe but it is discouraging and hard to know what to do. We also got a lowball offer on our current house and they haven't responded to our counteroffer.

progression

Here in a different setting, where we come once a year, I can better evaluate how John's illness has progressed. The most noticeable difference is that he is even slower. It really is beginning to take him until noon most days to get dressed and be ready to do anything. That is in part because he spends time reading his email and the New York Times on the computer, but he isn't willing to do it differently in order to participate in a family activity.

He also turned down a family activity one day because he was focused on wanting to go to a favorite food store to get the nuts he likes to snack on.

His slowness and focus on his own interests also means that he doesn't do much of the cooking and cleaning up. Our daughter complained that he wasn't doing his share. When I ask him to do something he asks one of the kids to do it, until I finally complained that I wanted to ask them to do other things. He's done a bit more since I complained (and passed on the complaint that he wasn't doing his share).

Our daughter says she definitely sees a change. She says when she starts talking fast he can't understand her at all. She isn't easy to understand when she talks fast.

I'm feeling a bit resentful because I haven't done some of the things I like to do here, such as ride my bicycle. That is in large part because my daughter's boyfriend is with her, so I'm focused more than usual on family things. But John isn't, so I have less flexibility.

vacation on Cape Cod

John and our son on Coast Guard Beach in Eastham MA. I do notice John doing less than a year ago when we were here.

John is home

John left Monday to go to New York city for a wine tasting, returned Friday. He was very happy with the wine tasting (and went to another) and he had one unsuccessful day of museums and one successful day. He came back saying he had had a wonderful trip.

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.

different directions

John is in New York city for a wine tasting and to go to museums. I've settled down so much about how he is doing, and I don't think he has lost much in the last year.

I'm very busy with the house we are renovating:

The first task is a new dormer for the attic.