LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Monday, February 9, 2009

too many different directions

We initially thought Florence would go back to her apartment this week, but the physical therapist said it would be better for her to go home on a Monday so it is tentatively scheduled for a week from today. But only if she can get her apartment cleared out enough to be safe. John arranged for someone who has worked for her before to help her, but today they didn't even get to the apartment (in the next building from the nursing home). And that person can only come for a few hours three days this week. I've tried to find someone to help John move some furniture for Florence, but he hasn't followed up on that. I don't know that he has the patience to work with her as she figures out how to rearrange her stuff. The whole project is the kind of thing where John is weak now--visualizing how a series of tasks fit together in order to get them done on schedule.

I don't have the time--even this weekend I'm committed to a local conference all day Saturday. I did call about her scooter, but the person I needed to talk to didn't even call me back.

Saturday, February 7, 2009

done right?

John has risen to the occasion of his aunt being in a nursing home recovering from a fractured pelvis. He is organizing himself instead of just drifting. He isn't as patient with her as he expects me to be with him, but he is there every day doing things for her. And it looks like she may be able to return to her apartment sometime next week.

When she first was injured I wondered whether to skip a meeting that I had promised to be at, and I told myself that if I wasn't there everything wouldn't get done right, but that was ok. I'm having trouble holding on to that philosophy. John just left the clothes Florence had been injured in in a plastic bag from the hospital until I started gathering her laundry to do. When I put the laundry in our washing machine I discovered that her bra with breast forms was in the bag from the hospital. Realizing that now she is getting dressed she probably wants that very much, I told John that the plastic bag that was over one of the hangers was particularly important, to make sure to give it to Florence when he took her her clean clothes. I think I even told him why.

That was Tuesday. Friday he called me because Florence had asked where her underwear was from the hospital. I told him it was in the plastic bag over one of the hangers. I said I had told him it was important, to give it to her right away. He said "You know I forget things." I feel badly for Florence. But telling myself it was important so I should have done it myself isn't really realistic.

Thursday, February 5, 2009

computers

John has been complaining about how slow his laptop was, and indeed it was five or six years old. So when it refused to boot I suggested we go ahead and buy him a new one. I wondered if a desktop with a good keyboard would work better for him, but he wanted a laptop. It came Tuesday and he started to use it last night. I've heard a lot of complaining and frustration since then as he learns to use it. I tend to feel blamed when he takes that frustrated tone. It feels like a phrase my mother was fond of: "No good deed ever goes unpunished."

Wednesday, February 4, 2009

finding meaning

When I'm low I feel discouraged that I'm not getting anywhere in getting to acceptance of my situation. I don't want to just endure, I want to find meaning in it. I find when I am stuck talking to someone different can sometimes help me think in new directions, so I went to talk to the minister of my church today. Something clicked me into trying to make a list of the different ways I could deal with how my life is changing. One of my philosophies of life is that there are always more than two alternatives.

  • I could be miserable and just endure and take antidepressants (I really don't want to do it that way)
  • I could feel a calling to this new life, to the challenges I face (that is what I want but so far it isn't happening)
  • I could be patient and wait for the meaning to gradually develop after I have been doing it for a while (people seem to think that is the most likely, but I'm not patient with it, it feels like just being miserable)
  • I could see this as a new stage in life where instead of measuring myself by concrete accomplishments I need to be aware of the more subtle ways in which I make some contribution, some difference in the world.

I see potential in that last one because I've been struggling not to fall into feeling that somehow I'm being punished or taught a lesson by losing so many of my hopes for the future at once (John's illness and the almost-definite dismantling of the program I've spent the last five years building at work).

I'm pretty good at looking for opportunties when things don't go the way I expect; this would be a similar mindset of seeing the more subtle good that comes from what I'm doing. My program may end but the professors who taught in it will take those ideas into other courses. John and I can't do as much as I had hoped but what we do is still a role model to our children.

Sunday, February 1, 2009

exercise

Exercise is what is keeping me from hopelessness. It seems so unfair to have the program I've built up the last five years at work destroyed. I never wanted to do administration until something came along that I so deeply believed in, and now it is coming to nothing. I shouldn't complain too much, my job isn't at risk (though a 10% pay cut is likely). But I still feel like the things I care about are being stripped away from me. At least I still have my triathlon training. I got in a 19 mile bike ride with a friend today and felt so much better.

Saturday, January 31, 2009

how not to do a simple expedition

I had nothing on my calendar today and so decided yesterday that I wanted to go to Atlanta, about 2 hours drive. My main goal was a large store specializing in ethnic foods which is confusingly named Dekalb Farmers Market. I like to go every couple of months during the winter to buy a box of 56 small grapefruit; I squeeze one for juice for my breakfast every morning. We also buy some vegetables and staples there we can't find around here.

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...

Thursday, January 29, 2009

"diabetes of the brain"

I went to a very discouraging meeting at work today--two hours of almost total negativity towards the plan that would replace my program. If that plan doesn't succeed I strongly suspect the alternatives will be worse.

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.

Monday, January 26, 2009

too many directions

I went to the nursing home this morning (at John's request) to meet with the dietician because John's aunt is unhappy with the food she is getting. And I went back in the afternoon after my teaching was done to meet with her doctor, who just got back from out of town. He actually said she might get back to her apartment in a month, it depends on how determined she is. Totally determined.

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.