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.


Monday, June 30, 2008

Asking for help

I had a nice bike ride yesterday but was teary in church. Two people saw and gave me a hug after church and that helped a lot. The rest of the day was fine--I'm very lucky that I don't tend to get stuck in depression.

I am on the pastoral care committee for my church and we had a meeting yesterday evening. Someone brought up the topic of people not feeling it is ok to talk about their problems in church. I piped up with a general statement that grew out of my present situation, which almost everyone in the group knows (a couple of people who weren't at the last meeting may not know). I said I want to take a class in how to accept help. One person liked the idea very much--she wanted to take that class too--and others liked it in theory but either weren't sure people would come or thought it should be something other than a class (like a sermon).

The rector (which is what we Episcopalians call our senior pastor) said that he thought people didn't ask for help because they don't want to show weakness. I didn't respond immediately because the meeting had gone on too long already, but afterwards I sent him the following email:

I don’t think the primary reason people don’t ask for help is fear of appearing weak. I see several other reasons as important:

  • Other people have more serious problems--I shouldn’t ask for help because other people need it more
  • I don’t know what to ask for—I imagine there is a menu but I don’t know what is on it and I’m afraid I will disturb people if I ask for something that isn’t on the menu
  • I am afraid that other people will think I am asking for too much, taking more than my share
  • I don’t know at what point it is appropriate to ask for help and I don’t want to violate the unspoken rules
  • I’m afraid the unspoken rule is: If I can possibly do it myself then I shouldn’t ask for help. If it is only appropriate to ask for help when there is no other choice then I’m not sure I have reached that point

I think my wish for a class or workshop is on one level a wish for someone to tell me the unspoken rules. Clearly I’m stuck in wanting to be good, to do it right. (Beneath all that is fear that I don’t deserve help.) Instead of rules, what would actually help me is stories/testimonies of different kinds of help given and how the giver didn’t resent it, so I can imagine such scenarios.

I will give you an example. Is it appropriate to ask if someone (perhaps a current or former youth leader) would do practice driving with my son, who is 18 and hasn’t gotten his driver’s license? My son did drivers ed at school but wasn’t pushing to get his license and we dropped the ball on getting him out to practice. Or should I just pay a driving teacher to work with him?

I'm working on learning to ask for help, but I really don't know how.

Sunday, June 29, 2008


I feel so that I have lost my freedom. I don't want to be here. I don't want to be doing this. Because I'm good at organizing and at figuring out medical things I will do well at caregiving. It even takes a kind of creativity to find solutions. But it takes away the time and energy to have much creativity in other areas of my life, to explore and go in new directions.

It is getting light now and I need to move from using my laptop in bed because John has woken up from his chair in front of the TV and is getting ready to go to bed. So I will go for a bike ride before it gets too hot.

Saturday, June 28, 2008


Over the years of John's ADD, I have found some compensating strategies that work. We have pegs to hang coats on immediately inside the door, and they do get hung up. Google Calendar is wonderful--we share our calendars so his calendar shows up on mine and vice versa. I download my Google calendar to a small palm pilot so I can carry it with me.

But lists have always been a problem. I concluded years ago that it was hopeless to get John to use a list, that it was too stressful for him to look at a long list of things to do. The month before our trip I depended on a list of things I needed to do, which was sitting in the middle of the kitchen table, and he never looked at it.

The psychologist who did the neuropsych testing said John should keep lists, and he seemed to think that was a good idea. I wish Google calendar had a way to integrate a to-do list so it would show up to one side of the calendar. I guess I will try Google documents for a shared to-do list, though getting John to check a third thing in addition to his mail and the calendar seems iffy and I wish it didn't take several clicks to get to the list. I actually like the paper list in the middle of the table, but it does get messy. I tried a "Getting Things Done"-style organized list myself for a while, but I think that would be too complicated for John. I set up the Google documents list divided into:

  • John short term
  • John long term
  • For the kids
  • Household

We will see if it works. Maybe I should clear off our messy refrigerator doors and print it out regularly and put it on the refrigerator.

Friday, June 27, 2008

home again!

We are all very glad to be home, after a month away (thank heavens for $3 a day remote parking at Charlotte). When it came time to figure out how to load all our bags into our rental car to start the trip home, our daughter came to find me to do it. Another thing John used to do. He was a bit lost all day--couldn't figure out what to do when Legal Seafoods at the airport didn't have the fish chowder we used to get for lunch. I had dropped John and the kids off and gone to return the rental car, but I got to the gate area in time to choose a different lunch.

I'm glad to have a weekend to settle in before the doctors appointments and other things to deal with next week.

Thursday, June 26, 2008

email to doctor

I've slowly been working on an email to the specialist who saw John. He wanted John to have neuropsych testing before trying Alzheimer's medications. The neuropsych testing didn't show much, but I still have some hope that Alzheimer's medications would help. So I am trying to explain in my email the issues that the neuropsych testing didn't show. So far I have written:

The testing doesn’t show problems, but I experience our daily life as radically changed. Some friends came to visit last weekend and were struck not only by John seeming physically frail but also by how he turns to me to do things for him and/or tell him what to do and by his being detached from what was going on (even more than he used to be).

Let me see if I can be more systematic about what symptoms are affecting our life:

  • John can’t manage planning things like travel or family activities. I notice this most with anything that requires trading off several considerations to decide what to do, but it is also an issue with simple family activities because he doesn’t take initiative. He doesn’t seem depressed, just passive.
  • John gets focused on something small to the exclusion of what is significant. One day at the family summer house he was focused on flies (there were indeed some flies in the house). He knocked into and broke a large bottle of salad dressing trying to kill a fly, then got obsessed with going to town to buy a flyswatter. What I thought should have been significant was whether we were going to take our kids to the beach.
  • John’s memory has never been good but it is significantly worse. Mostly plans or things that need to be done go out of his mind but he will remember if I remind him. But occasionally he doesn’t remember even when reminded.
  • He gets confused about things such as what we need to do or why. Mostly I can explain whatever it is to him and he will get it (or at least say he does). I haven’t seen him get lost in familiar territory yet, but he did fail to recognize our rental car after we had had it almost a week.
  • He will usually either leave the room and go read or sit without saying much if there are more than two or three people gathered, even with friends and extended family. He has some trouble with his hearing if there is background noise but it feels to me more like he gets lost.
  • It usually takes him until at least 10:30 to be ready to go anywhere in the morning.

John doesn’t tend to get anxious and is only rarely defensive or in total denial. He seems willing to put himself in my hands. But I can’t do everything. I need to be able to put some of my energy this summer into my own work and our son’s college search. I’ve been hoping that Alzheimer’s medications will help.

Wednesday, June 25, 2008

a new LBD blog

A welcome (and sorry that you have to join the club) to a new LBD Blogger: Holly is writing a blog called Lewy Body Dementia about her father.

I'm finding that the way to deal with my sister taking over is to make our own plans and then ask her if she and her kids want to join us. But that ends up even more with all the responsibility for organizing on me.

Tuesday, June 24, 2008


Scattered thunderstorms today but we had a nice walk on the beach, John and I and our kids. I was convinced the storm would pass us by but John got worried. I asked him if he wanted to take the car keys and start back and he did. The rain held off until after we were home again, but it was fairly close. I like the beach when it isn't sunny.

My youngest sister and kids are here sharing the house and she has taken over and is busy doing several things at once. No more quiet. Our bedroom is at the end of a wing and John has retreated there, but the wireless doesn't reach that far. The kids are playing Monopoly together, so it is good for them.

Monday, June 23, 2008

a moment of quiet

The Magnesium Citrate worked, in about an hour. The severe constipation causes prostate inflamation and John had difficulty urinating afterwards, but I gave him Naproxen and within a few hours that problem had cleared up. So we succeeded in avoiding a trip to an emergency room, thanks most of all to what I have learned from online support groups. None of John's doctors have given him useful guidance when he has brought up constipation as an issue. John did say that this time the problem did build up over several days--he thought he was ok after we got back from Germany and didn't pay attention.

My youngest sister arrives with three elementary-school children from California to share the house with us today. When I made our plans to stay on Cape Cod until Friday I thought she was coming Thursday. The house is plenty big but we have our own routine and eat a quite different diet (John and I eat low carb to control diabetes) so I don't look forward to having to cooperate on meals. We will see how my sister responds to John. I've talked more to my middle sister, because I changed my durable power of attorney to list her rather than John.

Sunday, June 22, 2008


After my bike ride yesterday I wasn't feeling well and took a nap. I woke up a little before some old friends arrived to visit overnight. We went out to the beach and then had a big lobster dinner. We took a walk to the lighthouse before we were ready for icecream for dessert. So I had a nice birthday.

My friends and I and the four kids went out to the beach today; John didn't go because he didn't like being splashed riding in our small motorboat yesterday and it was even windier today. When we got back John called for help. He was in the bathroom with severe constipation. He thought he needed to go to the emergency room but I remembered someone in the email group saying that they took their husband to the emergency room and were sent home with a bottle of magnesium citrate. So I went out and bought a bottle for John and we will see if that works before we head for the urgent care center or the emergency room. He's very uncomfortable. This is the second time this has happened to him (the first time he went to our urgent care center and the doctor helped him) and both times it has come on suddenly rather than developing over three or four days.

When he had problems after surgery we got some real help from a pharmacist in working out a routine of fiber, stool softeners, and Miralax. He may need to take the Miralax more regularly--he has only been taking it when he thought he needed it.

The husband of the couple who were visiting is a medical researcher (MRI) and so they weren't freaked by John's problems. My friend says he does see cognitive changes in John, and also sees how John is depending on me more. It was nice to get that validation.

Saturday, June 21, 2008


I'm reacting to Spouse's comment on my last post, which gives me a helpful opportunity to think more carefully about what I feel and why I write about it this way here. I tend to crash after an exhausting trip emotionally as well as physically, and what helps me when I am in that state is to let out my feelings. As I look at what I write on this blog I feel I sound like a whiner, always complaining about how John's issues affect me rather than feeling empathy for him. But again, having grown up in a family where my feelings were denied, I know that what is best for me is to accept my feelings rather than get stuck in feeling bad about feeling bad. I hope that what I write might help someone else who is feeling selfish and inadequate feel not so alone.

I do feel my future has been taken away from me. I expected this stage in my life (age 53 with my kids out of the house) to be a time when I could be more creative and productive in my own life. I hoped to be more active professionally and to redeem my rather weak research record by writing an important book in my field (I had begun research on that project but had to put it aside because of new administrative responsibilities at work). I had even responded positively to feelers about a job that would have been a large step up in another city, once John had retired and we no longer had the problem of two academic jobs in one place. Yes, I will have a life when this is over, but not those 15 years before retirement.

I had hoped to rebuild a deeper relationship with John. I had hoped we would now be able to have more of a social life than we had when two kids and two full time jobs took all of our energy and our house was in no shape to invite anyone over. A little more than a year ago I came to some closure on a long process of healing from childhood sexual abuse and felt that working through that old pain would no longer be a major focus of my life. I hoped that I could experience more joy in my life.

Now I fear whether I will even be able to keep my job, or whether I will need to retire earlier than I would have wanted in order to care for John (I will be eligible for full retirement in a few years so financially it will make more sense to retire). I certainly don't expect to be able to take on anything more ambitious in the way of work that would require a lot of travel. I'm committed to making time for my exercise but I have had to cut back--John's doctor's appointments and the extra stuff I have to do as the responsibilities of our home fall all on me take away from the time I would put into training enought that I don't expect to be able to do a longer triathlon this year.

I am very blessed. We have the money and flexible schedule to be able to travel. We have two wonderful kids. I have come as far as I have in my healing journey and have a wonderful therapist. I responded to a diabetes diagnosis five years ago by getting healthy and I enjoy very much the training for triathlons I do for exercise. I feel a part of a faith community (actually several faith communities). But today on my birthday I am grieving my losses.

And now I am going to go out for a bike ride and that will help my depression.

Friday, June 20, 2008


John came through last night—he not only made dinner but cleaned up afterwards. I slept pretty well but was still groggy in the morning. And my eye still hurt when I blinked--the medicine didn't seem to be helping at all. I called around until I found an ophthalmologist who could see me, but he didn’t see anything wrong. He didn’t deny what I was reporting entirely—he said it was probably the beginning of a stye. But it still felt like another experience of my pain not being seen and believed. I haven’t had a stye in 20 years or more, but it makes sense as something that might be a result of stress (particularly as I don’t ever wear makeup, which is the other thing that can cause styes).

John got focused today on flies. The house has a screened porch that connects the two parts of the house, and there were a number of flies inside trying to get out. First John wanted to leave the kitchen door shut on a lovely sunny morning so no flies would get into the house. Then he broke a large bottle of homemade olive oil and balsamic vinegar salad dressing trying to kill a fly. Then he drove into town solely for the purpose of buying a flyswatter. Punding here we come. But I don't think it is the result of too much levidopa, as such behavior was growing worse before John started medication.

I wish he would think about what we might do to enjoy the day instead. I suggested to our daughter that she would have to motivate us if she wanted to go to the beach. She and her brother took a walk on the beach alone (I was just back from the doctor and helping my mother with a car). I would have been happy to go out on the boat if someone else had gotten us moving. But with the kids taking a vacation from their ADD medication I can’t really expect them to do it.
We have friends coming tomorrow for one night. It happens to be my birthday, though I am trying to ignore it. My mother said I am too young to want to ignore my birthday. I’ve never been unhappy about getting older, but right now I don’t want to think about my birthday because I feel like my future has been taken away from me.

Thursday, June 19, 2008

end of the trip

Our travel went smoothly, except that as we were waiting in line for passport control our son said he felt queasy. It was about 8:30 pm when we got our rental car. Luckily we had planned to spend the night at my mother's house half an hour away instead of driving the two hours back to Cape Cod. As I stopped the car at my mother's house, our son threw up, a lot. I had given him a plastic bag, which turned out not to have any holes in it, so it wasn't a huge mess. I got him to bed with a bucket. Apparently he threw up several times during the night but I was so soundly asleep in the room next door that I didn't hear him call out loudly "help" until about 3:30 am. After I had helped him I had some trouble getting back to sleep, but I eventually did.

John woke up early for him, around 7, and very groggy, but he wanted to go with me to do some shopping. I thought that one main point of the shopping was that he had lost his pyjamas, but when we were part way there he said he had found them in a different part of his bag than where he usually put them. We weren't going to head to Cape Cod until mid afternoon so our daughter could get together with a friend first, so it didn't matter much what we did. I have a very sore (though not red or runny) eye and my doctor kindly called in a prescription for me for some antibiotic ointment--I'm hoping it will be better in the morning.

What we didn't fully realize is how much extra traffic there would be around Boston because of a parade for the Celtics. We got on the road for Cape Cod about 3:30 hoping to be early enough not to hit too much traffic, but it was bad. John said he was feeling less and less groggy but by the last hour of the drive I was running out of cope and hungry.

I said I was exhausted and once we got to the house someone else would have to take over. John said we didn't need to stop on the way, he would go out quickly and get some things for dinner. I further said I couldn't handle eating later than 7 pm. He said he thought that wouldn't be a problem. I ate some bread and cheese, but I still feel just desperate to go to bed. I'm going to try to stay up at least until 8.

It is now 6:45 and he sent our daughter up to ask me how to cook the fish. John for several years did almost all the cooking, but I did specialize more in fish. I'm actually feeling a little better, so the prospect of dinner at 7:30 doesn't feel as impossible as it did. I asked our daughter to focus on helping him (she's distracted by trying to set up Skype so she can talk to her boyfriend with a webcam I just got her). Whatever happens we will learn from it.

Wednesday, June 18, 2008

On the way home

We haven't had the promised internet access several places. We are now in the Zurich airport, changing planes on our way back to Massachusetts. I'm very glad to be going if not home at least back to a familiar place where we spend time every summer.

I wrote a little yesterday:

On the train today from Prague back to Berlin, we talked about a next trip. My mother has made plans for a family gathering in Venice, Italy, after Christmas 2008 to scatter some of my father’s ashes. My father was 80 when he had a massive stroke in the airport in London on the way home from a trip almost two years ago. He had had a minor stroke a few months before that so he had become a bit less capable, but he never acted as old as John acts.

This trip has gone well enough that I feel ok about getting tickets for Venice. We are going to try to arrange to spend five days or so in Rome first, just John and me and our kids. If I’m really lucky I can get frequent flyer tickets going into Rome and out of Venice.

Our daughter loves travel and museums. Our son tires of it faster, but he said today he has really enjoyed this trip. So there are two reasons to travel now—while John still can and while our kids are into traveling with us. I’m learning to be less overstressed by it, though I’m still going to be very glad to be out of all of this togetherness.

Keeping this blog makes me realize how resentful I am, instead of accepting what I face. I'm usually an optimist but this prospect has thrown me.

Monday, June 16, 2008

Getting away from it all

We got away from the crowds yesterday morning, going to the former Convent of St. Agnes to see an amazing museum of medieval art that John particularly wanted to see. Then we went to the ghetto area to see the Jewish cemetery and several of the former synagogues that have exhibits. We didn’t see all the exhibits—the Jewish museum is spread out over 5 or 6 buildings—but I was left with a feeling of sadness, not a feeling of the bustling life that was once there. My sense of that life comes from Marge Piercy’s He, She, and It, which I taught this past spring and which has a subplot about the rabbi in the Prague ghetto who made a Golem.

We had lunch at a restaurant and dinner at the apartment. After dinner I suggested that we take the trolley to see Wenceslas Square, just to get a sense of the newer part of the city. Our daughter liked the idea. John first said he wanted to go then after we waited for him for a while he decided it would take too long and he wanted to go down to the mall where there is internet access to check his email. A few minutes after we got home from our trolley trip, he came in, needing the password for my computer (which he has been using since we started this trip). The password for my laptop is a logical but slightly tricky one that the computer service people for my part of the university use. I don’t want to change it because there are several minor problems with the laptop I need them to fix. So I gave it to John and he headed off again. I asked him if it was important, as our daughter wanted to use the computer to write messages to send in the morning, but he was determined.

Looking at the computer, which he didn’t shut down properly, it looks like he had to go someplace else to find internet access but did find it. I do worry about him going off alone in the evening that way with my laptop. I think I’m using the wrong strategy. I’m not making it easy for him (for example by not changing the password on the computer) hoping he will get discouraged. But I think he just gets more determined. When we are home it is good for him to have a routine of things he does on the internet, on his laptop. I just wish he could drop in when we are traveling.

This is a longstanding difference—in the days before the internet it bothered me that he wanted to read the newspaper while on vacation in some exotic place. To me a vacation means leaving that world behind. On the other hand I brought the computer this time (I didn't for one vacation last winter) and have been dealing with a fair number of things that have come up at work.

Sunday, June 15, 2008


Yesterday we went to Prague Castle, which was terribly crowded. We decided to go back another day to the cathedral, as there was a long line, but we saw the other main sites. John and I are both historians; he always taught Western Civilization and I did so for many years. So we were particularly interested in seeing the site of the Defenestration of Prague.

A couple of years ago I had gotten our daughter interested in the story as well, on the basis that “defenestration” is a wonderful $10 word (as in “don’t use a $10 word when a 25 cent one will do”). Defenestration means to throw someone out a window. In 1618, two messengers were thrown out the second floor window in the photograph where you can see a cross below, leading to the Thirty Years War. According to the Catholics the messengers survived the fall because they were borne up by angels, according to the Protestants they survived because they landed in a large manure pile.

We stopped at the lovely garden of Valdstejnsky Palace and at yet another Baroque church (St. Nicholas) and then took the trolley back to our apartment. It was only about 4 pm when we got back but we were all very tired and travel-weary. I don’t know why we felt so much more tired unless it was the crowds.

It was nice to be able to have dinner in. I had bought some prepared goulash at the supermarket and we also had leftovers from a large celery root which I had boiled and chopped (partially mashed) the day before. (We had discovered mashed celery root as a low carb replacement for mashed potatoes several years ago, but in the southeast U.S. at least celery root is hard to find and expensive. Here it is clearly a staple.) We had salad with some excellent cherry tomatoes I bought at a fruit and vegetable stand and pasta for the kids and it added up to as good a meal as we would likely have had at a restaurant, for a lot less money.

Friday, June 13, 2008

Prague old city

Yesterday indeed went much better. Instead of making a detailed plan for what we wanted to see, we walked across the Charles Bridge and wandered in the old city, going into some churches. And then we came upon the Klementinum, originally a Jesuit University, and took a tour. An amazing baroque library and also an astronomical observing tower with recreated 18th century observing instruments just a step beyond what Tycho Brahe and Kepler would have used when they worked in Prague. What I had never seen before was the system used in the 19th century to determine noon exactly and provide a signal to the town clocks. We followed our interest in the history of astronomy and went on to another church to see the tomb of Tycho Brahe.

Our daughter wanted to look in stores so she and I walked back the way we had come over the bridge, while John and our son took the subway back. I got mixed stories about how lost they got but they came out of a subway entrance other than the one opposite the trolley stop and had trouble finding the trolley stop. We are beginning to feel confident with the trolley system and so able to get around easily from our apartment. I'm slowly suggesting to our son that he pay more attention, and he likes figuring out public transportation systems.

In the evening we had dinner in our apartment, then went up a funicular (somewhat like the cable cars in San Francisco, but with two cars connected by a cable) to the top of a hill overlooking the city. At the top of the hill there was a smaller version of the Eiffel tower that you could go up for the best view. To take the elevator I had to say John was handicapped—I think the kids felt that. John said it was fine for me to play the handicapped card, he wouldn’t have been able to walk the stairs. It was a wonderful view; the picture below shows the bridge we walked over in the morning.


The train ride from Dresden to Prague, mostly along the Elbe river, was lovely, as I had heard. We were supposed to be met at the train station but no one was there. I handled figuring out how to call the apartment company, with John mostly looking lost. They didn’t have a record that we had arranged to be met. The guide books talk about many rip-offs in Prague so I was reluctant to take a ride with a driver who wasn’t a licensed taxi, and I wasn’t sure what to do when John thought it a good idea. It turned out fine and a lot cheaper than the transportation we had signed up for.

I miss how safe I came to feel in our Berlin apartment; I was immediately on edge about Prague being a more dangerous place for tourists. Another thing that makes this place feel scary is the language. Our daughter is studying German and I took one year of it in college, but German also has many words that are close to the word in English. Czech is a Slavic language so there are almost no cognates with English. John studied Russian in the army so he picks up an occasional Russian cognate, but not many.

Our apartment is not quite as nice as the Berlin one but still roomy and works for us. The big disappointment is that the internet promised doesn’t work with my computer. It is also further from everything. John and I walked to a supermarket and ended up taking a taxi home—actually there was a convenient trolley, but no convenient place to buy tickets for it. The apartment does have a small front loading washing machine so we have been doing our laundry a little at a time. And it is actually in a beautiful historic area of town, south of the castle and not far west of the Charles Bridge.

We had dinner at our apartment and ended up not trying to do anything. We had talked about going out to a nearby view but none of us really felt up to it. John and the kids did take a short unsuccessful walk looking for icecream. Today we will learn our way around and it will all seem better.

Wednesday, June 11, 2008


I very much wanted to take the train to Prague, though the travel planner who was helping us recommended flying because good fares are available and it would use less of our time. But I found a site with better train fares, and once we had started to plan the train the travel planner suggested we stop off in Dresden, on the way.

I was nervous about getting out of the apartment and getting to the right train station but it worked out so smoothly we were there about an hour and a half early. There was a supermarket in the train station so we bought rye bread and cream cheese and smoked salmon to make a picnic on the train. We were even able to figure out how to get on the right train car for our reserved seats. The ride to Dresden was just over two hours. It ended up much easier than fighting an airport, and I will be more confident on our next leg.

We got to Dresden in plenty of time to walk around the town and see some museums. Our son said he was most interested in the armour musuem, but he and I were done when John and our daughter were only a quarter of the way through, so they suggested we go on. We tried to go to the old treasure collection, but there were no more tickets available this afternoon, so we walked through the two large churches and walked back to the hotel. Old city Dresden is very strange--quite a few historic buildings reconstructed and much more construction going on. One church has blackened stones where the originals could be put back into place and whiter stones where new ones have been used, but in most cases you are looking at a reconstructed historic city. It seems strange to me, particularly seeing it still being built, but then I have never been a believer that healing is going back to what the situation would be if the harm had never happened.

Tuesday, June 10, 2008

a poem by our daughter


To watch him walk
With his lopsided gait
Of one foot dragging
With one arm still at his side
Is a constant and jarring reminder
Of how my world has changed

It’s still so easy to get impatient
As though I know it is not by choice
It is still ‘how can he be so slow.’

It isn’t really that many changes,
We have to leave more time for getting places
And he wears a bracelet with identification
But we still talk about the same things
And he is as good of a resource as ever.

My world has changed
But so can I
So it doesn’t really matter.

by EMM, age 15

Monday, June 9, 2008

Moving slowly

Today was somewhat more difficult. I had hoped to find a place where we could drop off our laundry and pick it up the next day, but when I found such a place and succeeded in communicating mostly by pointing I learned that if we dropped off our laundry on Saturday it would be ready on Wednesday. That wouldn’t do, so I got directions at a hotel near our apartment to a laundromat a short subway ride away. That was my first priority this morning. Four people make a lot of laundry—we had a full rolling carryon suitcase and another bag. John offered to help but I didn’t want to wait for him to get ready. My son went with me to the laundromat and my daughter came an hour later to help me carry the laundry back. It took a long time to do—it was around 11 am when we got back.

John wasn’t ready to head out to a museum, though he had gone out to do one errand while we were doing laundry. Once it got to 11:30, I suggested we eat lunch at our apartment before going out. We finally headed out for a museum around 12:30. As we were walking I said to John that I wished that just occasionally when I was late getting back he would be impatiently waiting for me instead of not getting ready until I was there to push him. He said should he not have washed the breakfast dishes? I said that he had lots of time. He said he didn’t get distracted, I wasn’t accepting that things take him longer now.

The German history museum was very well done, though I found the 20th century part too painful. We went back to our apartment with the idea that we would rest for an hour and then go to Checkpoint Charlie, but then John said he didn’t want to go. He was frustrated he hadn’t gotten to check his email (something my daughter and I have been doing at a nearby coffee shop while waiting for him to get ready in the morning).

I’m willing to work around his needs the way I have been doing. But I do get frustrated sometimes and easily get so resentful when I don’t get any appreciation or even acknowledgement for doing the laundry or when John is huffy that it isn’t his turn to do the dishes. I’m not very good at this. At the emotional part, I mean, at having empathy for him.

The picture is a view from our apartment, looking towards the Gendarmenmarkt and the Franzosischer Dom.

When John changed plans on us I suggested that we have a quick dinner at the apartment before the kids and I went to Checkpoint Charlie. I went to the supermarket and got sausages and the local currywurst sauce for them. And then the kids and I walked to Checkpoint Charlie and spent a long time in the museum there. It is a little disappointing not to be able to see anything of the wall, but the stories and pictures of escapes (and actual cars and boxes used) are moving, particularly seeing so many stories at once. I was also taken by the story of an American named John Runnings who made a statement by climbing up onto the wall and walking on top of it for nearly 500 meters in 1986.

Sunday, June 8, 2008

Many museums

We have evolved a pattern. It takes John until about 10:30 am to be ready to head out, so I go to the supermarket or my daughter and I go to the coffee shop in the next block to check our email. It is somewhere between 11:30 and noon before we get out of the subway at our destination, and then we stop for a light lunch before going into the museum.

Today we went to Schloss Charlottenburg . My particular interest was section of the palace that is a museum of prehistory and early history, including what remains in Germany of artifacts from Troy (many were taken by the Soviets and have not been returned). Our daughter was interested in the Palace as an example of reconstructing historical sites and so she and John toured the palace. I am less interested in palaces and our son and I went to a museum across the street called Sammlung Berggruen showing mostly Picasso and Klee. There were some Klees that made me gasp.

We met up again at an icecream shop that was advertising milkshakes. The kids just wanted to come back to the apartment so they got off the subway at our stop and John and I went a little further to see Nicholaikirche, the oldest church in Berlin. It turned out to be closed for construction, as a number of important sites still are in what was the eastern half of the city. We did stop into another church which was a museum for the architect Schinkel. I saw something that said Berlin and Pottsdam between them have over 300 museums, and I believe it.

Our son isn’t as interested in museums as the rest of us, but if we respect his wishes some he is willing to go along. He wants to see the Natural History Museum so we will make that our first priority Tuesday. He wanted more time there than a quick trip this afternoon.

Our apartment is half a block from Berlin’s Konzerthaus, so this evening we went to a symphony concert of Beethoven and Bruckner by the Rundfunk-Sinfonieorchester. The student rush tickets for the kids were 10 euros but it cost considerably more for John and me. Our seats were in the front row of the first balcony behind the orchestra, which is a fun place to sit because you can see all the conductor’s gestures. We had quite a close view of the musicians as well, which John particularly enjoyed. I told the kids this was a life experience but they could leave at intermission if they wanted to and they did, but they seemed very focused on what was going on while they were there.

In Berlin

John admitted to getting something wrong yesterday and I actually am beginning to get to the point of feeling sorry for him. It has taken me a while—he and I both tend towards acting like we know it all, and I suppose I’m particularly intolerant of my own faults in him. So I used to be just glad when he admitted I was right. In this case he was convinced that American Express traveler’s checks were the best way to bring money on our trip. That was true 20 years ago, but American Express has lost out to Visa in Europe and ATMs have changed access to money when traveling. John has never been good at adjusting to the world changing, and that is getting harder for him. It actually didn’t work out too badly—the place that he found to cash travelers checks will waive the fee if you cash a large enough amount and we will do that next week to get the cash we need to pay for our apartment in Prague.

Once we had figured that out yesterday we went to a very interesting anthropological museum in the suburbs, at the Museumszentrum Dahlem. It was lunchtime by the time we got there—I was ok with that (and we found a Chinese food stand for a quick cheap lunch) but our daughter was frustrated. She is very interested in museums, may want to make that her career, so she wanted lots of time in the museum. She wants not only to see everything but also to read everything. She and John go at about the same pace, so that works well. Our son is having trouble sleeping and was tired so he and I left early. I think he finally slept better last night.

Friday, June 6, 2008

Settling into Berlin

John and our son had trouble sleeping last night, but we still had a better day today. We went to the Brandenburg Gate and saw an interesting variety of memorials—to the slain Jews of Europe, to those who died trying to cross the Berlin wall, and to Soviet soldiers in World War II. The picture below shows John and our son at the Holocaust memorial.
Then John and our son headed back to the apartment and our daughter and I took a long walk in the Tiergarten, the downtown park.

John fell during their walk back to the apartment. He said he just caught his toe on a smooth pavement. He was very slightly scratched but otherwise fine, but it clearly scared him, with good reason. I don’t know if a walking stick would help him balance—he bought two hiking sticks some years ago and has said he found them very helpful for hiking, though I haven’t seen him use them much. The difficulty at present is that any problem happens so rarely.

John went to the supermarket and a wine store after going back to the apartment and then in the evening we all perked up enough to take the subway to a Turkish open air market. We got dinner in that area at a Greek restaurant, but even that was expensive. We are very glad we rented an apartment rather than staying at a hotel.

Thursday, June 5, 2008


I’m writing posts on my laptop to upload to Blogspot when I have an internet connection. I think when I post them I will back date them to when I wrote them, so don’t be surprised if suddenly several days of posts appear. The person who manages our apartment told us that the nearest internet cafĂ© is a couple of kilometers away. Which surprises me, because we are in a fairly lively part of Berlin, just off a square called the Gendarmenmarket.

John and our son didn’t try to sleep much on our flight across the Atlantic, my daughter and I tried but were more frustrated because we didn’t succeed very well. We changed planes in Frankfurt and so got into Berlin about 3 pm. We took a taxi to our apartment, which is very satisfactory. Once we got our keys and put down our bags I wanted to go out and buy food, so that we could have supper in the apartment. We were tired and that seemed less of a strain than going to a restaurant, plus I wanted breakfast food for the morning as well.
The apartment manager told us where to get a transit pass, so we focused on that as something else we should do right away. I said to John that he should go get the transit passes and I would go buy food, which was in walking distance. I knew I would be frustrated with what he brought back if he went to the supermarket. And I didn’t want to figure out the subway system and ask the questions needed to buy the passes. That was my big mistake, letting him do something because I didn’t want to do it myself. I just didn’t think, didn’t step back from John’s tendency to focus on something and feel it has to be done immediately.

There were several choices— there are three day transit passes with museum discounts or a seven day group rate transit pass without the museum discount. It is also possible to purchase at museums a three day pass for admission to many different museums. John was going to a tourist information center so I told him what the different options were and assumed they would be able to tell him what would work best for us. But he didn’t ask, instead he just bought the three day passes because the seven day didn’t have museum discounts. They were very expensive, over $40 a person. I was frustrated when he got back because when they turned out to be that expensive I thought the seven day ones would have been the better deal.
John said “You need to tell me exactly what you want me to do.” I’m learning that lesson the hard way. The trouble is, when he goes off he says he can do it, it is only when he comes back not having kept it all straight that he says I should have told him what to do in more detail.

It may yet work out. We started out today at our highest-priority museum, the Pergamon museum, which it turns out both is within walking distance and doesn’t give the discount with the transit pass. The passes are good for three days starting when they are validated, and we didn’t validate them today. There is plenty to do within walking distance. So perhaps we didn’t need the seven days. We certainly didn’t have to buy the passes when we first arrived, considering that we didn’t use them today.

John did fine in the museum, in fact I brought our son back to the apartment around 4:30 pm when he got tired. John and our daughter finished out the Altes Museum and went to the numismatic collection as well. There was one more museum where our one-day passes were good, but we did well.

I seem to be the one who is the most tired, trying not to fall fully asleep while writing this. I pushed to eat supper in the apartment again—going to a restaurant seemed too stressful to me.


"Studies of Thinking and Memory in Healthy Older Adults and Patients with Dementia."

Hi Pauline here.

I’ve been in touch with the Center for Translational Cognitive Neuroscience at Bedford VA Hospital, In Bedford, Mass. They do memory studies usually involving patients with different types of dementia and also require healthy older adults (65-85) to serve as controls. A typical experiment requires the participant to view a series of items, either pictures or words, on a computer screen, and then be tested on their memory for those items.

Regarding the need for LBD patients, they said they would potentially be interested in working with this group- in fact, they had had run a few studies a few years ago with LBD patients the recruitment sort of petered out so the study has been put it on hold for a while. A bit of work would have to be done to the experiments so that they could run on the laptops in use these days, but they said it would be worth the effort if they could get at least 5 or so willing LBD participants.

Usually the studies take between 1 and 2 hours, and there are 2 types of studies- EEG studies, where they record an EEG while the participant takes a memory test (compensated at $25/hour), and computer-based studies, which are run on laptops (and thus are very portable) and are compensated at $10/hour.

Right now the tests are only at that facility in the Boston area, but I’m going to talk to them about remote access…I mean all they need is an EEG and a laptop. I know these kids are computer savvy enough to figure it out. So for all the readers out there…here is an opportunity to get involved in the cure. Call Josh at 781-687-3360. Tell him you are interested in the studies on LBD. (And that you read about it here!) If you can talk him into using a local testing clinic in your area, then we as a small clutch here should be able to provide enough testing candidates.

Remember they want healthy older adults (65-85) also as controls, so if you are carrying your Lewy down for the tests, you might as well take them too.

You may visit their web page here.

Tuesday, June 3, 2008

Posting will be spotty

We leave this evening for Europe--a week in Berlin, one night in Dresden, and five days in Prague before returning to Berlin for one more night before flying back to Massachusetts. I hope to post occasionally during the trip but will not try to post every day while we are traveling.

We already had this trip planned before John was diagnosed, but it has become more important as an opportunity to do things as a family while we still can. We are renting apartments in Berlin and Prague, which I hope will make the trip less stressful. John has been doing very well the last few days, just occasionally strugging to try to do something like make a rental car reservation for our return (he wanted to check out something beyond what I had found but found only the same price).

We have already been away from home for a few days but in a familiar vacation house. I don't know whether in a new place he will be more disoriented or whether the excitement will inspire him.

Monday, June 2, 2008

retirement and disability

I thought John might do better once the semester was over (May 12) and he was no longer working, but it didn't get any better. He was busy moving out of his office and trying to clear out his home study. Now that we are on the first part of our trip he seems to be doing better.

When I first raised the possibility that he had Parkinson's, I asked him if that that was the case whether he would want to retire early so he could enjoy more of his retirement. He said he wasn't ready to think about that. Within a month he was talking about retiring on disability but continuing to teach one or two on-line courses. As we explored what disability payments he might be eligible for it became clear that it was better not to work at least the first year in order to qualify for disability. He also felt he got much worse the first month after diagnosis and then stabilized once he went on Sinement. So now he has given up on the idea of being able to teach on-line, though he does have a research project he wants to continue to try to do. I hope he will be able to enjoy working on that, whether he can complete it or not.

I found it surprisingly hard to find good information about the best tactics to take when applying for disability. John first filed for disability retirement from his job. He was a state employee and the state rules are that you are eligible for disability if you can no longer do your particular job, even if you can still do other kinds of work. He started the process of filing early, though it took a long time before all the paperwork went in. The personnel office told him it was ok to file while he was still working, that they understood that people held on longer than they should. The state disability pays him his retirement as if he had worked until 65, but he has less than 20 years in the system (28 years are needed for full retirement) so it isn't that much.

When he first was hired full time for the state he had signed up for private disability insurance (at that point it was with Traveler's insurance company). We had half forgotten about it but it was a deduction from his pay and was still in effect. We got the paperwork for that sent in just before we left on this trip. If that is approved it will pay him something like $600 a month until he is 65.

The next step will be to file for Social Security Disability, which would particularly help us because we have two kids still in school (one is 15, one turns 18 in June). The standard is stricter for Social Security Disability, you need to not be able to do any job. Our local neurologist said that it is easier to get with Parkinson's than with other disease and that he will support John's case. The Parkinson's specialist said expect to be turned down and have to get a lawyer. I've seen a number of people in on-line Parkinson's group say they got it the first try. Our lawyer recommended a lawyer who specializes in Social Security Disability and I may see if I can pay just to meet with him and get suggestions before we file for the first time. I don't want to hire the lawyer to do it from the start--we can do the first applicaiton and then if John is turned down maybe we give it over to a lawyer.

Sunday, June 1, 2008


John says he just feels different, his body feels different than a year ago. I asked about carrying things up the stairs and he said that there were things he couldn't do helping our daughter move out of her room yesterday that he would have been able to do six months ago. It makes me sad. He is determined to make the most of his situation so he doesn't admit to grief. I am glad he is not depressed, but it is lonely to be mourning alone.