LEWY BODY DAILY JOURNAL

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

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Showing posts with label life stories. Show all posts
Showing posts with label life stories. Show all posts

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.

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.)