I miss having someone to share the work

Yesterday I went with John to the urologist, who again recommended more surgery for his benign prostate enlargement (or the scar tissue from the first surgery). They did say they could do it without general anaesthesia. John wants to try a dilation procedure first, but if that doesn't last very long he wants to find a high-ranked doctor farther away. Sigh.

I'm wishing for help with Christmas. Our daughter and I went and got a tree today and I got it up, but no one has offered to help with decorating it so it isn't decorated. John hasn't been feeling well this afternoon/evening, so I shouldn't complain about today specifically. But more generally, Christmas is too much work to be trying to do mostly on my own. I'm ok with cooking a traditional meal even if I have to do most of the cleaning up too. But even if my daughter will help me some with decorating, having to do the cleaning up makes the decorating seem too hard. I need to think about what I would want in a simpler Christmas.

I'm here

We had at least one of our kids home all summer but now they are both back at school. My daughter helped me a lot with decisions and shopping for the house renovation (a big help because John shows no interest). I taught both kids to drive (talk about stressful). The house renovations have been intense and are still not done--hopefully by the end of the month. Our current house hasn't sold, though there has been some interest. I've been posting renovation pictures on Facebook and instead of blogging Twitter has been about my speed (what I post there shows up on Facebook too).

John fell asleep at his computer and compressed the nerve in his elbow. The result was that he lost a good part of the use of his better hand. It is supposed to get better, but more than a month later it has improved only a tiny bit. He needs me to change his socks for him and cut up his meat. I wasn't expecting to be here already.

My tentative plan is to move the second week of October. Somehow. I am teaching a full load this fall.

I am grateful that John has been able to continue to take responsibility for helping his 98 year old aunt. She took a bad fall a couple of weeks ago and I met the ambulance at the emergency room, as I knew it would take him too long to get there. But he managed after that. Amazingly, nothing was broken and after a little more than a week at the nursing home she is back in her assisted living apartment.

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.

spring break

This upcoming week is my spring break and I don't have any travel plans except to take our son on a day trip to revisit a college before he makes his decision. I'm trying to use the vacation to do things that have seemed too stressful to face. I've found most of the missing documents for our taxes, except the ones from Social Security (sigh). But when I went to look for one missing tax form I discovered I hadn't paid it. No doubt they sent the bill to the mortgage company for the mortgage we paid off, but I should have thought of that.

I was in a hurry to get this year's taxes done because of college financial aid forms but it has become clear that we won't get any aid, except at one school that offers scholarships for in-state students. I wrote some letters explaining our situation but our son doesn't qualify because of a savings account my father established for him, before considering parents' income. I'm glad our son has the money for college but it makes me feel badly about not helping him much.

The big task for the break is house matters. I was reading about basement refinishing last night and discovered that there is a better approach than what I have been hearing so far--wall and floor products that will not grow mold. I have an appointment with the designer tomorrow but the two contractors I called yesterday haven't called me back yet. We have an appointment Monday with the realtor who will list our current house and I had a good conversation with him on the phone. He used to be our travel agent so John feels comfortable with him. I'm dreading what he is going to say about what we should do to make the house look better, but I've already told him that is going to be a problem for us.

I give up

I had the stomach flu in the early hours of Sunday morning. I was through the acute phase so I traveled home Sunday afternoon but it was hard and I've felt very weak today. And sore--I strained a muscle under my breastbone during the acute stage. Over the weekend I cooked healthy food for my daughter, who had a cough, and encouraged her to catch up on sleep, but she reports that today she was sicker and didn't go to her classes. I'm going away again Thursday for a professional conference in Tallahasse, and my two commitments there are Thursday and Saturday afternoons so I can't shorten the trip even though I am driving. I did try to make the first step towards setting up for our son to revisit a college, but they are on spring break the same two weeks he is. I haven't been able to deal with calling about missing forms for our taxes much less with taking the next step towards house renovations. And John is worried about our sex life.

weekend away

I'm in Massachusetts for the weekend with our daughter, who was very glad to see me. We talked some about death--some of her classmates went to the wake for the girl from her school who died, and it was open casket. That death was such a tragedy it is not surprising that students said the body didn't seem real.

I said that I believed that for older people a good death is possible. Our daughter thought Florence would be a good example, I think because she has had a full life. I said I wasn't sure Florence was going to feel ready. We talked about my father's death, which was sudden, the way he would have wanted it. We didn't mention John, but it still felt valuable to me to talk about death as something that can be natural and peaceful.

Quick update

I want to write about the trip, but I've run out of time again today. But let me write about being home because that is what is on my mind right now.

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.

depressed

My laptop was in the shop for three days, but I've also been depressed. I'm not sure why it has hit me so strongly--it doesn't seem to be one big thing but just the accumulated burden.

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.

financial forms

I'm filling out the preliminary college financial aid forms for our son, who will go to college next year. His grandfather gave him a very nice college fund so he isn't going to get any need-based aid but paying for his college isn't a stress on us. But I still have to fill out the form for him to be eligible for merit-based aid. The trouble is that 2008 is a transition year for us--John worked all of 2007, half of 2008, and will work none of 2009. For the next few years his retirement plus social security plus private disability insurance (which only pays until he is 65) won't be that different from what his salary would have been.

But where I am seriously stumped is that I don't know what of John's income is taxable and what is tax free:

• Is social security retirement (or social security disability if he gets it) taxed?
• Is his retirement income from his job as a state employee taxed?
• Is his private disability insurance taxed?
• The one I am pretty sure of is that his annuity income is taxed, as we bought that with untaxed money such as IRAs

I was thinking maybe I could get someone to help me with the form but after going through it once myself the problem is that I am going to have to go to several different people to get answers to different questions. I am grateful at least for a good online form that saves the information I entered and then prints out a list of questions I still need to answer.

back from our trip

What should have been a 5 hour drive took more than 7 between rain and Thanksgiving weekend traffic. I miss sharing the driving. But the kids focused well on helping me load the car, and we are pretty efficient. Both kids go back to boarding school tomorrow so I will focus on them tonight.

perspective

Our son P. and I talked about many things driving home from his school--his Thanksgiving vacation started yesterday. At one point he asked the name of John's illness. He did have the idea it was like Parkinson's with Alzheimer's. I said that is a good first approximation, but having trouble thinking can take different forms. Alzheimers is most of all memory loss, so the person asks you the same question over and over again. Then there is one called Fronto-Temporal Dementia where the person acts inappropriately. Lewy Body Dementia starts with problems with excecutive function, difficulty with planning and organizing and managing anything complicated.

P. said while it is hard for me to try to do everything, that seemed better than having to answer the same question over and over again or deal with inappropriate behavior. And I said yes. I hadn't thought about it that way.

back from an unexpected trip

Our daughter E. was sick and I had a pretty-much free weekend and found low-priced last-minute airline tickets. So I decided Friday morning to fly to Massachusetts that day and she and I spent the weekend at my mother's house (my mother was away). E. had a terrible sore throat but the mono and strep tests thankfully were negative. I cooked her healthy food, like a soup made with sweet potato, carrots, parsnips, apples, and ginger (roast vegetables, puree with chicken stock, heat, add a spoonfull of greek yogurt to each bowl of soup). And we talked a lot.

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).

Parents' weekend

Our son has spent four years at boarding school, and this year as a senior he has put all the pieces together and his teachers had wonderful things to say about him.


John wasn't ready at the time we had agreed we would leave on Friday--we got off half an hour late and missed our first teacher appointment (which we were able to reschedule). John did make an effort to do better Saturday--when we decided we needed to leave our hotel at 7:30 am he arranged for a wakeup call at 6. It really does take him that long, even without taking a shower. We did get off at 7:45 (which we had allowed for in saying 7:30) to get to the school for more teacher conferences.


I feel like John is not quite on target in that kind of social situation but not seriously so (and it never was a strong point of his). He doesn't go totally off topic but a good bit of what he says isn't really to the point.

one back to school

We took our son to his senior year of boarding school yesterday. I started to cry when we met with the college counsellor. I feel like worry about John's and my future has distracted me from helping our son with deciding about colleges. He was supposed to write a draft of an essay this summer, but he didn't even start it. I did remind him a few times, which leads to the other time I cried, talking to his advisor, worrying whether he will learn to step up and take responsibility for himself.

I'm hoping that pushing our son to take more resonsibility for himself because of his father's illness is coming at a time when the challenge is right for him. But I worry that it must be awfully hard for an 18 year old boy to have his father beginning not to be a father figure any more. His sister is younger but more resilient and more able to talk about what she is feeling. The idea that this is going to be hard but we are all in it together as a family works for her.

kids

Our son goes back to boarding school tomorrow, our daughter on Monday. Last year empty nest hit me as a big shock. This year so much has changed. I am glad the kids were away last spring when John was diagnosed and also went through prostate surgery (for benign enlargement, but he had a rough recovery). But I will miss them.

I drove the kids to an eye doctor appointment today more than an hour away and we talked, but mostly about their lives. I did hear more John and our son's trip to visit colleges, and it does sound like it went very smoothly. We talked about their schools, not about the future.

enjoying life while he can

John's approach to his diagnosis is to want to make the most of the time he has. That is certainly a lot better than being depressed about it, but it doesn't combine well with my wanting to get everything worked out. I feel burdened trying to organize our future, and he is out having a good time. It doesn't happen very often, but the larger pattern is that he can get done the things he is interested in but not the things he has agreed to do to help me.

Tonight John went out with his wine drinking friend (wine is John's hobby, while I don't drink). I had complained a month ago when he went out when our daughter was home just for a few days, but he didn't think he was wrong. This time the situation is that I have been caring for our son since he had his wisdom teeth out yesterday. John and our daughter didn't even come home from vacation in North Carolina until noontime today. But I can't complain too much because the recovery from oral surgery has gone much more easily for our son than it did for our daughter last fall--he hasn't even taken pain medication today. All I have to do is keep making him smoothies.

motivation

I drove our daughter to a summer class at Duke today--left at 9:30 am, got back at 8:30 pm. It didn't seem like as long a day of driving as it was; she and I talked to whole way up and I had downloaded several new albums to listen to on the way back. I tried to explain the whole family financial situation to her and she seemed reassured to know. My father gave the kids college funds when they were born which have done very well, so I'm not worried about our new situation limiting them.

I called John from the road to tell him when I would get home, and I asked him if he had gone to church. I didn't particularly expect it--it is something which has always been more my thing than his--but he likes the Sunday evening service we have been going to recently. He said he hadn't been able to motivate himself. I thought that was interesting, that he saw it as not being able to motivate himself. That applies, I think, to doing more exercise--he knows it is a good thing but needs structure to motivate him. He says he does want to try Silver Sneakers, so maybe he and I will go sign up at the Recreation Center tomorrow after his urologist appointment. I wish so much for him to have motivation to do as much as he can, but the disease is taking that away.

kids

I just heard from our son, who left Saturday for a two-week study abroad program in Mexico. Getting our son signed up for this program was one of the things this past spring that made me realize that there was something wrong with John. The program is run by the community college where he taught, so he was finding out the details. He worked out the complications of our son taking the placement test, but he missed that there was an application form that had to be submitted.

Very kindly they let our son into the program late. I've been nervous because it is the first thing our son has done where he has been treated like a college student (he is 18 but just finished his junior year of high school), responsible for his own money and medication. He has attention deficit disorder and is not good at keeping track of things. But I heard from him today that except for car sickness on the bus he is having a great time and the family he is staying with is great.

I've told him that he is going to need to grow up quicker now because of John's illness, and that he is no longer the most forgetful one in the family. This trip going well feels like a hopeful sign that he is ready for those challenges.

I pick our daughter up this evening from a trip to see a school friend. It will be good to have her home again. She is younger but she is the resonsible one--I was glad she could get away just to have fun as well as the summer course at Duke she goes to next week.