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.


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.

Sunday, January 25, 2009


I said to John a few weeks ago that I didn't feel like we were partners any more, I felt I was taking care of him, and that was an issue for me in being interested in a sexual relationship. It was a day when I was very depressed and he hadn't noticed--that was actually the bigger issue at that moment. Since then we have moved back towards more partnership, both because he has been making more effort and because we have had to work together to deal with his aunt's medical problems. But sexuality is complicated these days on all sorts of levels. His participation is changed by stiffness as well as by the effects of Parkinsonism that Cialis no longer fully helps. And I'm just in the last few months seeing more change in me as a result of menopause (I'm hopeful I'm finally past the on-again off-again stage). He asked if we should give up and I said we didn't have to give up completely but let's see it as a diminishing part of our life rather than fighting the changes.

Saturday, January 24, 2009

what happened to this week?

Yesterday evening and all day today John and I were at an Enneagram retreat. Neither of us had worked with that system before--I had experience with Myers Briggs, he has never done anything like this. I enjoyed it; I like opportunities to listen to what is inside me, particularly if they are experiential more than didactic. And knowing that I am a type 1 does help me understand my patterns. John says he enjoyed most of it, though he isn't sure what type he is (he thinks maybe 4, I was leaning more towards 7). He was engaged. It was a nice small group--12 participants, many of whom we knew from UCC church.

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

neurologist visit

John has an appointment with the neurologist today. The neurologist is gradually getting to know John better and ask smarter questions. He asked John about constipation and sleep and in detail about exercise and he asked me if I thought going back to 5 mg. Aricept had made a difference. I said no--I saw a benefit with the 5 mg. but not a significant difference between 5 and 10, though that may be because John is less depressed recently. John felt the 10 mg. badly affected his balance and it is better again now that he is back to taking 5 mg.

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

back to work

I had yesterday off but today I had a busy day, as I'm co-teaching a course that meets Tuesdays from 2 to 4:45. John went to physical therapy and had lunch with a friend before going to visit his aunt. It was after 5:30 pm when he got back--she had asked him to clean her CPAP machine, and her way of doing it involved taking apart every little part. I suppose we should be hiring someone to help her with such things (and mail and laundry and etc.) but it is hard to think clearly about when we have no idea how long she will be in the nursing home, if all goes well. I don't think the doctor has any idea how long healing might take, given her advanced age but exceptional health and determination. But with no idea whether she will be in the nursing home for more than a month or two it is hard to know how much to set up. She was originally thinking she would be there a few days; I'm not sure she has accepted that it will be more than a few weeks.

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

Caregiver feelings

On a discussion board I read, someone wrote:

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.

  • dazed
  • emotional
  • vulnerable
  • anxious
  • shattered
  • torn
  • angry
  • terrified
  • exasperated
  • drained

Friday, January 16, 2009


John is next of kin to his 98 year old aunt Florence, who fifteen years ago moved to a retirement community near us. She's actually cognitively pretty sharp but tends to be obsessive and critical so he has refused to tell her even that he has been diagnosed with Parkinson's disease. I did get him to have her list me as backup on her health care power of attorney. Today she called John to say she needed a ride home from the hospital--they were releasing her after determining that she had fractured her pelvis.

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

good news

We heard today that John was approved for Social Security disability. He applied, was turned down, we filed an appeal ourselves, and now he is approved. That is within six months of when he applied. It is a little more than 6 months from his date of disability (last May) but that is because we waited several months before applying. Someone told us to wait until his disability was approved from his state goverment job, which turned out to be bad advice (particularly because he was 62 years old and thus eligible for early retirement).

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

John's busy day

John is proud of how much he accomplished today. He got forms and wrote out the kids' quarterly taxes (something I didn't think worth doing), he made an appointment with a new Parkinson's specialist (a partner of the one who moved away), and he had a student come to do yard work for an hour. Now he is working on buying tickets to go visit our daughter in April and has called me to the other room several times to help.

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

my mother

On the trip, I noticed that my mother has started to look to us to tell her what to do, as well as asking the same question every few minutes. Her mother died of Alzheimers so it is not a surprise. What I've been realizing the last few days is how upsetting it is to have her no longer be the strong one, even though I didn't have a good relationship with her. I haven't turned to her for support and help in dealing with my situation with John, both because she tended to be so critical and because she didn't have much relevant experience--both her husbands died suddenly (one in a car accident, the other of a massive stroke). But there is still some child reaction in me that finds it scary that she is no longer bigger than me. In more adult terms, maybe I felt that at least she was there as a last resort. Not any more.

Sunday, January 11, 2009

evening out

John looked up options and we ended up going out for dinner last night to a jazz club. We had a pleasant dinner, and I found things to talk about that actually concerned us. (His conversation topic of choice is to tell stories he heard on NPR.) At least until we were driving home, when I suggested that his concerns about our son might be a reflection of his own teen-aged experience. He didn't like that, but then he's never been willing to consider that there might be any unconscious influences operating in him.

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 9, 2009

glad it is Friday

John's cough is gone today. I'm still not feeling well. I got home early this afternoon and tried to catch up on various things that need to be done. I got very frustrated trying to fill out college financial aid forms, and I'm afraid I took out some of that frustration on John when I asked him to call his retirement office (forgetting they close early on Friday) and then he kept telling me that the information I needed didn't make sense.

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 8, 2009


We were supposed to go to the first meeting of an Alzheimer's Association early stages support group this morning. But John woke up during the night coughing and didn't get much sleep. He called the doctor and took the first appointment he was offered, at the same time as the support group. The doctor said it was just a cold and gave John more codeine cough medicine. I had told John not to take it (we had some on hand) because it was likely to cause hallucinations but he took it anyway this morning and said he didn't have any problem.

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 7, 2009

Trip report

When my mother wanted to arrange a time when we could all go to Venice to scatter my father's ashes, I said Christmas time would work better for us. I forget how short Christmas vacation is for my kids--it was tight.

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 6, 2009

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.

Friday, January 2, 2009

in haste

I've got 4 minutes left in an internet cafe in Venice--we haven't found anyplace here with wireless. The trip is going well--a lot to organize and the weather has gotten colder and colder but we have seen a lot we have enjoyed, both in Rome and in Venice. John is enjoying himself and doing things with the kids and that is what is important but sometimes I feel like I am doing all the work. I've got pictures but won't upload them until I've got better internet access.