Saturday, January 31, 2009
John said he wanted to go so I made plans to have coffee with a friend and then be home in time to leave around 10. It was maybe 10:15 when I got back; I knew he wasn't likely to be on time. It was about 11:15 before we left the house. I did other things while I was waiting for John so I didn't get terribly frustrated. But we both had been looking forward to lunch at a Chinese or Indian restaurant in Atlanta. I had had breakfast before 8 and knew I shouldn't go that long before eating lunch, but I really didn't want to stop at a chain restaurant along the way instead of the ethnic food I had been looking forward to.
It didn't help that I took the time to stop and put air in the tires of John's car (which I was driving because it gets even better gas mileage than mine). A warning light had been on for weeks. I noted it a couple of weeks ago and he said he hadn't had a chance to look in the owners manual for the proper air pressure--I told him it was on the door post but he still hadn't gotten it done. I wasn't going to drive to Atlanta that way.
We decided the closest good lunch was a good Chinese buffet on the near edge of Atlanta, but then I couldn't find it. So then we went further to an Indian restaurant that John knew he could find. But by then it was almost 2 and my blood sugar was so out of whack that food really didn't make me feel better. We did our shopping at Dekalb, but it was terribly crowded. I had been looking forward to the expedition but I really didn't enjoy any of it. We did buy things we will enjoy: grapefruit ($11 a box), red lentils, candy, chutney, chinese eggplant, fennel, cheese, vital wheat gluten for the reduced carbohydrate bread I make...
Friday, January 30, 2009
1. I did a half-ironman in 2007 (http://deeplanguage.blogspot.com/2007/10/full-race-report-south-carolina-half.html).
2. I'm signed up to do Beach to Battleship full in November (http://www.beach2battleship.com/)
3. I wasn't an athlete until I was diagnosed with diabetes at age 48.
4. I love intensity but I didn't really know that about myself until I began racing.
5. The only pill I take daily is a supplement to reduce stress and depression (http://us.naturalfactors.com/search.asp?mode=List&pid=762).
6. I am depressed about my husband's illness (Parkinsons and the early stages of Lewy Body Dementia).
7. When I was a teenager I wanted to be like Mr. Spock on Star Trek.
8. My other hero/role model was May Sarton.
9. I didn't expect to marry or have kids.
10. My children make me happy.
11. My parents were atheists--what started me on the path to being a churchgoer was reading Mary Daly, Beyond God the Father.
12. These days I go to two churches most Sundays: Episcopal and UCC.
13. I pray mostly when I am having trouble getting to sleep or back to sleep.
14. I want to simplify my life but I have too much stuff.
15. I'm very self-critical but I am trying to learn to be gentler with myself.
16. I wish other people saw that I'm hurting inside.
17. I'm not big on privacy because when I was a child privacy protected the abusers.
18. I haven't touched alcohol since I got pregnant for the first time.
19. I have never had my ears pierced.
20. I don't regret having missed all the things I would have learned in Girl 101 except not being able to teach them to my daughter.
21. I love my Scion XB but my Ford Escort was special to me because my first car was a Pinto stationwagon.
22. My favorite food has long been lobster, but rasberries and blackberries are a close second.
23. I like milk chocolate better than dark chocolate.
24. I wish I were better at making friends.
25. I didn't mind turning 50 but now I am not looking forward to the next 10 years of my life.
Thursday, January 29, 2009
So instead of wallowing in my discouragement, here is some information I pulled together to answer a question about Avandia for dementia:
There's a good discussion of some possible relationships between diabetes and dementia on http://diabetesupdate.blogspot.com/ The title of the post is "Things you can do to preserve brain function" and it is currently the top post.
Avandia is nasty stuff. 66% more heart attacks. Causes water retention. Causes weight gain. Causes heart failure. Causes osteoporosis. Causes macular edema. The safe way to reduce blood sugar is to eat fewer carbohydrates. The next best approach is the drug Meformin, which the life extension movement even recommends as an anti-aging drug.
If dementia is diabetes of the brain, with the brain no longer able to use glucose properly, then the promising approach is to feed the brain cells with ketones, which they can use instead of glucose. There is a medical food supposedly coming out this spring to do so: http://www.news-medical.net/?id=43094 But you can accomplish the same thing by adding coconut oil or MCT oil to the diet. See http://coconutketones.com/ A lay expert member of the Alzheimer's Spouses group has looked at the published scientific literature and says this is definitely more than quackery. The thread on coconut oil at http://www.thealzheimerspouse.com/vanillaforum/ has the best discussion I have seen.
Update: here is an particularly good link for the scientific explanation: http://www.savethesynapse.com/wp/?p=15
Monday, January 26, 2009
I'm teaching a three hour class alone tomorrow afternoon--the professor I coteach that course with is out of town.
An email came out this afternoon proposing a new curriculum that would abolish the program I run and replace it with something else, which looks like it could be a larger version of the same thing. At the very least, it could offer the same kind of opportunities for me and for the other professor who works with me. But oh, that is going to be a lot of work.
Credit for the core 13 hours of math, science, humanities and social sciences can be met with two types of courses:I see opportunities there, but my first reaction is that I am tired, I don't want to start fresh.
1) Introductory or foundational courses that are taught within a major and which count towards the major and Gen Ed; and
2) New “Global Challenges” (GC) courses which are current, interdisciplinary,
relevant, and exploratory.
GC courses are not owned by specific departments – faculty from different disciplines can contribute to the teaching.
Courses will be fresh, somewhat like the ‘freshman seminar’ model at other universities.
To avoid adding more administration, this program can be managed by Undergraduate Studies.
GC science courses will be similar to current STS classes but more expansive
in scope. GC courses in the other areas will have a similar expansive
perspective on current issues and cross-disciplinary links.
An important philosophical change we are considering is to do away with the
term “general education” altogether and replace it with some new terminology
like “Preparation for Global Challenges”. Doing so would help eliminate
current student perceptions that GE is fractionated and unrelated to their disciplinary studies.
We conceive of the new GC courses as falling into at least ten mega-themes:
• Environment • Political Structures • Health & Wellness • Energy • Value Systems • Technology & Society • Cultural Narratives • Peace & Conflict • World Commerce • Math in Context
Within these mega-themes several specific courses would be offered each term that are interdisciplinary in scope and focused on modern problems.
Numerous existing courses can likely be repurposed to meet the requirements for
GC, and GC courses can vary over time as faculty expertise, availability and interests dictate. To meet the demand for GC courses and still reduce the number of teaching faculty, relatively large section sizes may be required. Since many of the disciplinary courses that currently also serve as GE credit will no longer have to be taught in multiple sections, the total number of courses taught will be reduced.
Sunday, January 25, 2009
I had a long phone conversation today with our daughter's boyfriend's mother. Both sets of parents feel positively about the relationship, but we aren't always quite sure how to think about a 15 year old (she will be 16 in April) and a 16 year old in a serious relationship (getting towards a year now). I talked about our conversation afterwards with John and I was pleased that he was thoughtful about respecting the kids' developing relationship rather than wanting to fall back on rigid rules. Our daughter is so mature it is hard to remember she is not 18. The boy's parents don't think of him as so mature, but we are happy with how he treats our daughter.
Saturday, January 24, 2009
John got angry and defensive Thursday when I went to find something in his aunt's apartment he hadn't been able to find. But at least some of the time he is able to divide things so that I do the complicated parts and he does the more day-to-day stuff. He is rising to the challenge and getting more done than he was a few weeks ago, though I did spend an hour Friday driving to pick up another copy of an xray because he wouldn't have thought it worth doing.
We have an appointment to meet with her doctor Monday afternoon. My greatest wish is for some kind of timetable--if things go well it might take her this long to get back to her apartment. But I don't think I will get it; no one knows how a 97 year old in exceptional health will respond. There are so many complicated issues. A medical supply company called about an order from the nursing home for a manual wheelchair for her and I said wait a second, Medicare won't pay for the power chair she will need if she gets a manual chair now. Pure luck that I know that.
Wednesday, January 21, 2009
John is concerned that his walking is getting more awkward. I guess that is the one place where there is clear progression in the last three or four months. I asked the doctor if it was time to get a handicapped parking permit and the doctor said yes and signed the form. That feels big to me--we are in a new category--but John seemed to just see it as a convenience.
The next question in my mind is when to start Namenda, but thought I would wait and ask it of the movement disorders specialist this summer unless John starts to have hallucinations, which would be a reason to start sooner.
Tuesday, January 20, 2009
I was moved by the inauguration, which I listened to on the radio (I would rather imagine it in my head). But there was one point where the speech fell into something I preach against professionally. Obama said: "We will restore science to its rightful place, and wield technology's wonders to raise health care's quality and lower its cost." Technology isn't going to provide a magic solution to avoid hard decisions about health care. And a 97 year old woman getting a drug that costs something like $700 a month to encourage bone growth is just the kind of case that makes it so hard, even though it could save money if it gets her out of a nursing home back to her apartment.
Monday, January 19, 2009
Phillips Brooks asks us not to pray for easy lives but to pray that we might be stronger women and men:
Pray not for tasks equal to your powers.
Pray for powers equal to your tasks.
Then the doing of your work will be no miracle
But you will be a miracle.
And every day you will wonder at yourself,
At the richness of life which has come to you by the grace of God.
(Herald of Gospel Liberty, 1920)
When I heard this quote Sunday I had the impression it was from Martin Luther King, Jr. It turns out instead to be from the author of "Oh Little Town of Bethlehem," a 19th century Massachusetts clergyman named Phillips Brooks. I still find it inspiring to me both in my own struggle and for what we face as a nation and a world.
Saturday, January 17, 2009
It has been more than 6 years that I’ve been d.e.v.a.s.t.a.t.e.d. by the
changes in his life -- and in mine.
Friday, January 16, 2009
I had an important work meeting and John said he didn't need me (and I realized I needed to let go quickly of "if I don't do it myself it won't get done right"). He took her back to her apartment but the retirement community administrator thankfully decided Florence needed to be in the "health care center" (nursing home) and they took her to a room there. John was pretty shaken by the whole thing--his parents both died when he was in high school and college so she has been his closest family member for a long time.
John came home for supper and then we both went back to see her. I wrote down the long list of Florence's food requirements and the precise times when she wants her medicines, as well as a long list of things to bring from her apartment tomorrow. She was worried that she only had one slipper because she saw it as very important that she not put her feet on the floor. Actually, it is going to be a while before she gets out of bed. John was very glad I was there; I think he was better able to manage the crisis stage this afternoon than the details that she was thinking about this evening. Unfortunately the doctor she knows best is on vacation for the next week. In this small town the doctor covering for him is John's doctor, so at least we know him, but he doesn't know Florence well to mediate between her precise ideas of what she needs for her health and what is realistic in a nursing home.
Thursday, January 15, 2009
The people we have dealt with at Social Security have been wonderful. Today, the person who called explained to us that because we currently have two children drawing benefits, we are getting more from retirement than we would get from disability. When our son is finished high school in May then the total family disability benefit will be higher than the retirement benefit. So they will send us papers for John to sign to stay on retirement until June and then change over to the disability that has already been approved. That then gives him about $300 a month extra for the rest of his life (he is currently getting just over $1,000 a month so that is a significant increase).
Wednesday, January 14, 2009
He is making an effort to do more, and I'm glad of that. He's also focusing more on what I wish for, that he would take more responsibility for his own quality of life (as long as he can). I need to be clearer in my own mind that I don't so much want him to help me with what used to be tasks we shared as to do things for himself. I think he would be happier and keep a better quality of life longer if he exercised more, did more things with friends, and found more support (eg. by talking to a minister-friend).
What about my day today? I had a good run this morning--I've been careful about stretching and the knee pain I had Monday was almost gone. I checked some bills from the trip over Christmas and sent a fax to my mother. I talked with a stockbroker and made an investment decision. I prepared and taught my course. I had coffee with a friend who is struggling with post-cancer issues. I found out how to appeal for insurance to pay for out-of-network therapy for our daughter and sent an email when I didn't get the person I needed to talk to on the phone. I answered emails, mostly from students. I worked on travel plans for two trips for myself and one for our daughter, though I didn't get tickets bought. I wouldn't call that a particularly productive day, though that is partly because I started more things than I finished and I find it stressful to have so many balls in the air.
Tuesday, January 13, 2009
Sunday, January 11, 2009
Today I was in tears at church, feeling very depressed. I think one thing that has thrown me is that my mother's not-yet-diagnosed Alzheimer's has reached the point where she leans on me and my sisters. This has advantages--she can no longer remember things long enough to be critical. But it is a lonely feeling. I told someone who said I am the matriarch now (I'm the oldest). That's a scary thought.
John didn't notice I was low and wanted to spent time together. I had a bike ride planned with a friend and knew that would help my depression most. I did tell him that I feel like I have to take care of him, it isn't a partnership any more, and that he isn't supportive of me. He first tried to deny that I have to take care of him and to blame me for not telling him my feelings. I did come up with some examples he would accept. When he accepted that there is a problem with our relationship he said he wanted to work on it. I have trouble making much commitment to that idea because I don't have much hope.
I'm standing up to him more, trying to call him on how he isn't putting in the effort to make the best of his life as it is now. That may be unfair--he may not be capable of it. But he wants to be treated as a full participant and I'm not ready yet to fake that.
Friday, January 09, 2009
I'm pretty financially savvy, but I had no idea that John's retirement benefits have a value, as an asset, equal to the total that he contributed minus what has been paid out to him so far. On the other hand, an annuity with no payout after the person dies does not count as an asset. Thank heaven for kind people, in this case a financial aid person at the college that is probably our son's first choice. The good news is that I got the Profile form submitted.
Thursday, January 08, 2009
This kind of thing is hard for me because if I had been the one who was sick I would have taken much more seriously my commitment to the support group. John was positive about the group when we signed up in December, so hopefully we will get to the next meeting in two weeks and he will like it. I would really like to have a place to share the confusion of this stage when John is ok and not ok.
Wednesday, January 07, 2009
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
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.