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, December 22, 2008

traveling tomorrow

We celebrated Christmas yesterday--a busy day but it went smoothly. The new thing this year was that the only presents I got were ones that I had bought and given to John and to our daughter to give me. John always struggled with what to get me, but he used to try. It isn't a big deal to me but it is a symbol and a sadness. I've told our kids that next year they need to help with presents for me.

I got my daughter a copy of Don't Sweat the Small Stuff and I read part of it myself and think that I might actually be ready now to listen to those ideas. Our daughter has been happy to help me in the kitchen and that has made me more cheerful about making Christmas happen. We had friends over for dinner last night--goose with sauerkraut and sausage stuffing, mashed cauliflower, green beans, and pumpkin flan.

Tomorrow we leave for three days in Rome, John and I and the kids, and then a week in Venice in a small hotel with my two sisters and their husbands and kids and my mother. I'm at the point where I'm feeling overwhelmed by packing and trying to get ready.

I don't know how much I will be posting during the trip but I am bringing my computer.

Saturday, December 20, 2008


I'm feeling better; I'm blessed to be resistant to depression. I had the energy to do Christmas shopping yesterday, and it went well. Today once I get some gifts wrapped and mailed my main focus will be on Christmas cooking, as we are celebrating Christmas today and tomorrow before we go away.

I asked John to work on Christmas a month ago, when I was swamped at work, and he has done some things. He has invited friends to come for dinner tomorrow and bought the goose. I know he bought some books for the kids. I did buy a present for him to give me, as he has for years had trouble figuring that one out. I was worried I didn't have much for him, but then I found two books he wanted on CD. I'm also giving him Dragon Naturally Speaking 10 software so he can start experimenting with speech to text. I think he will need a new computer to run it well but I keep wondering if he would be better off with a desktop on a rolling stand with a full sized keyboard instead of a new laptop.

Thursday, December 18, 2008


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

John seems reasonably content with the way things are now, but I still feel guilty about the things he was complaining about a couple of weeks ago.

I walked through the house we want to move back to with the designer on a bleak day with the heat off and his estimate of what the work will cost is twice what I had thought. Not impossible, as the house we are currently in is the more valuable one (both bigger and in a prime location), but I thought I had all the money I needed lined up and I wouldn't have to worry about that and it isn't looking that way.

I continue to hear more discouraging news about the program I run at work. My job is secure, but what I've built is not.

We are going away Dec. 23rd on another big trip. I'm trying to keep track of what needs to be done. The first few days it will just be John and I and our kids, but much of the time we will be with my sisters, their husbands and kids, and my mother. I always feel torn between being myself and fitting in and I also wonder how they will react to where John is now.

Our daughter is discouraged after a tough semester at school.

I'm still not fully recovered from my sinus infection--now I'm having coughing fits. I haven't been able to do my regular exercise. And the antibiotic has thrown off my digestive system a bit.

People tell me to take things a day at a time and I just feel like a failure because I don't know how to do that. Somebody has to plan. I am too uptight about making mistakes, but I can't change that, except very very slowly.

Monday, December 15, 2008

family history project

I asked John how his appointment with the therapist went today. He said it wasn't at all how he expected. He was so upset last week, but he no longer had those feelings today when he got to the therapist. He said "That family history project you have gotten me into has changed my mood." He and the graduate student are clearly enjoying each other.

He asked me how I felt and I said I can manage with the way things are now, but when he was unhappy and wanted it to be different I didn't know how I could respond.

Our kids come home Thursday and Friday and we go away next Tuesday, so John and the graduate student won't have a chance to work further on the project until after we get back from our trip. But the graduate student went away with pages of notes to make into an outline of what to ask John's aunt about.

Sunday, December 14, 2008


We have one of those air adjustable beds, and my side had a slow leak for months. Finally it got bad enough that I faced the problem and disconnected and plugged the air hose on my side to see if the problem was the bladder or the pump. Turned out the problem was the pump and so I called the company and they sent me a new one (for a small fee--we had some warranty left). I've been waiting for someone to help me move the bed to install it for a week, but finally gave up and John did it with me. We actually did better than I feared with moving the cedar chest and the bed.

Then we changed the sheets and put on a new comforter cover, and that was where John had a hard time. Some of his problem was fine motor skills like buttoning the comforter cover, but where he commented on his difficulties was that he got confused with the process of putting on the cover. My method is to turn the cover inside out and lay it on the bed, attach the comforter at the corners, reach inside the cover and grab the far corner, and then turn the cover right side out with the comforter inside. It does sound confusing when I write it. It is a lot easier to do with two people than alone.

Saturday, December 13, 2008

Christmas letter

John wrote a draft of our Christmas letter. It starts off with several paragraphs about how well our kids are doing and our travels this past year, and then it suddenly changes tone. John wrote:

John’s big news is that he has retired early, and this has resulted from a serious health issue. Indeed it has been quite a tough year for him. The life changing health situation is Parkinson’s. One never anticipates such a development, and it was Pam who first perceived what the changes John was experiencing might mean. Pam began to suspect what the problem might be in January, and after John having first visited his regular physician, he was formally diagnosed by a neurologist in early March.
That is followed by more about his prostate problems last spring.

In my part of the letter I wrote:
Pam spent a lot of time going with John to doctors appointments and so realized quickly that his diagnosis meant a change in life path for both of us (particularly as the doctors think he has a form of Parkinsonism that has cognitive as well as motor effects). She thinks a lot about how to put feminism and caregiving together and how to find meaning in our new challenges.
And then a sentence each about my work, doing triathlons, and serving as a spiritual director. Often we don't get our Christmas cards out before Christmas but I'm actually done my other big tasks and wondering what to try to get done about Christmas.

Friday, December 12, 2008

financial forms

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

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

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

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

Thursday, December 11, 2008

sick and tired of being sick and tired

I went to my doctor today and she said I had a bacterial sinus infection and gave me antibiotics. So hopefully I will start feeling better soon.

I arranged for an older graduate student named Mike to come over yesterday to meet with John. He is going to help John start recording family history--both the stories John knows and they will also interview John's 96 year old aunt who lives in a retirement community nearby. I may take over the interviewing when John gets to telling his own story, but there is a lot of family history he wants to get down first. Mike will figure out the technology--a digital voice recorder with two clip on microphones, probably Audacity to edit the files, and Dragon Naturally Speaking for some transcribing. John seems enthusiastic--he said months ago that he was going to interview Aunt Florence and had not made any progress towards starting so I think he is glad to have help getting focused. He has a lot of background in oral history interviewing so he can also see himself as teaching Mike.

Tuesday, December 9, 2008

oral history

I am trained as a spiritual director and a couple of people come to me regularly to talk about their journeys. One of those people, knowing that I also have experience with doing oral history, asked me if I would interview him and have him tell his life story so he could tape record it. He plans to edit the result for his grandkids. It is a long process--the last time we met we spent two hours covering less than 10 years of his life.

I'm thinking I should do the same with John. Our daughter talked about taping family stories last summer and he liked the idea, but she didn't have time and energy. It would be something of value to our kids to have and would give John and me something to do together.

It is hard for me to make that commitment to John. The voice is still so strong in my head saying "what about me?" What about all the other things I have to do? What about the kind of spiritual journey I wish I could share with him and he isn't interested in? (He says he wants to hear about my journey so long as I don't expect him to feel anything similar; I said it doesn't work that way when it is his disease.)

Monday, December 8, 2008


John spoke today (when we met with the therapist) about feeling I have put up my barriers and disconnected from him. He said he feels like I love him but I don't like him. I didn't know what to say--he was upset and it seemed cruel to say there is some truth in that. Last week I gave him a book I liked very much that I thought might help open up more sharing. John said today that he found the book completely foreign to who he is.

After I came home I happened to read a story (Christian) on the internet about the importance of being true to our feelings (this link goes to part three, but has links at the beginning to parts 1 and 2). I feel like my only choices are to betray myself to keep him content or to betray him.

It has been one of my philosophies of life that there are always more than two alternatives. But I'm still not feeling well and I'm too low to think of any right now.

Sunday, December 7, 2008


I spoke at the UCC church today. I said something like:

"Advent is about waiting. Sometimes all we can do is to wait in the darkness, feeling abandoned, isolated, that our lives have no meaning. We hide that pain and fear under our busy-ness and consumerism, but it may be better to accept it, to sit with it and try to remember that God is with us there in the darkness.

When my husband John was diagnosed with Parkinson's last spring, my first impulse was to do something. I did research on the internet, I suggested to the doctors medications to try. Sometimes that approach works--it had worked for me five years ago when I was diagnosed with diabetes and changed my way of eating and started exercising and ended up healthier than I had been in years. But sometimes we have to realize we can't fix it. Nothing I can do or he can do will change the course of John's illness. It has been a hard for me to take that in, to accept that."

I invited the other people present to speak if they wished of where they were waiting in the darkness, either in their personal lives or in the world.

The pastor spoke of our words as a lament, which she defined as speaking our pain to God with an expectation that God is listening.

Saturday, December 6, 2008

bad cold

I had hoped to head it off, but it didn't work, I've got a bad cold. I am trying to practice being gentle with myself--last night I went to sleep before 8 pm and slept until after 7 am and today I went to my office but didn't get much done. I've been cooking dinner despite how badly I felt--John would have if I had asked but I didn't ask because he would have been so slow and dinner would have been late. But he has been concerned. I hope he doesn't catch it, as even dextromethorphan is on the list of drugs to be avoided, much less codiene cough medicine.

Thursday, December 4, 2008


John went to New York Monday for a special wine tasting, came back yesterday afternoon. I had asked him to schedule his flight so he could drive our daughter to the airport Monday morning, but he forgot when he bought the tickets. I probably wouldn't have felt comfortable with him doing it anyway, since she had a friend with her. But I had to take our son back to school Monday also, so it meant 5 hours of driving for me, after over 7 hours on Sunday. Tuesday morning I had a very sore shoulder from all that driving but it is better today.

John did have a good time in New York and reports that his travel went smoothly. He doesn't seem too exhausted--he got to a massage appointment today. And he has even been acknowledging the strain on me of all the driving.

Wednesday, December 3, 2008

One slide

This image comes from the One Slide Project to encourage people to talk about their wishes for end of life. The idea is for people to spread the word and add this slide to Powerpoint presentations they are giving.

We can say yes to 4 and 5, but I don't feel I have enough information on 3. I've worked some on writing out my wishes for myself.

Tuesday, December 2, 2008

appreciating what I have

I have trouble enjoying what I do still have with John, which is a lot, because I am grieving so what is lost. Instead of appreciating what he can still do, I resent what I now have to do. I've been trying to work through this by accepting my feelings. What has worked for me in the past with difficult feelings is to go through my anger and resentment, let myself feel those feelings, and eventually I will be able to get past them (while if I try to suppress them they will never go away). But it doesn't seem to be working.

I think the reason it is not working is that I have not been able to fully get past my resentment over the things I didn't get from my mother (like a safe childhood). I'm not willing to appreciate the things she did/does give me because she didn't give me things I critically needed as a child. So I easily get stuck in child feelings of "it isn't enough." But I don't know how to heal that further with my mother either.

So I am beating myself up about being stuck in anger and resentment. John used to express concern that I was feeling bad about feeling bad. Maybe I just need to give it more time. But I'm wondering what other ways out there might be.