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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Wednesday, September 3, 2008

The one I care for

Another writing for the journaling workshop, on the topic: "The one I care for."

John grew up in Houston, TX, where both his parents were schoolteachers. He had difficulty both with learning disabilities and with not fitting in with his peers, but his mother gave him a lot of support. His father died when he was in high school, his mother when he was in college. He has one brother but they became alienated from each other when John was in high school and his brother in college.

After college John joined the army because by signing up for three years he could choose to go to the language school instead of being drafted and sent to Vietnam. He studied Russian, hoping to later do Russian history, and that specialty got him a posting in the Washington DC area. When he had finished his time in the army he did first a masters degree and then a PhD in history (though not in Russian history because he had found the language so hard). He was in his mid thirties before he got his first full-time professional job.

That job was as a historian working on a contract for the National Aeronautics and Space Administration. John and I met when he read an article I had published and called me up for help in getting started in space history. We build a relationship long distance. When his three year job ended he moved to South Carolina where I had a permanent job and we married the next year. He had lived alone for 25 years before we married. He struggled for several years in temporary jobs before landing a permanent job at the local community college.

His professional ambitions didn’t come to much after an article that took him forever to write was rejected. But that made our life a little simpler, as I had a good job and it would have been hard for me to move for a better job for him. We had kids and our first child particularly had several problems that needed treatment and it was a struggle to manage everything. Two jobs, two kids, and a house was a bit more than we could handle, particularly during the period when a lot of my energy went into healing childhood wounds.

Looking back, I’m aware of the fights I didn’t win. I said I was not willing to have guns in the house, but he has a couple of nonworking guns that he inherited and they are in our attic. I said that was unacceptable to me, but he wouldn’t listen. I tried to get him to stop listening to books on tape while doing things with the kids, but he wouldn’t. I asked him earlier this year to start reducing the size of his wine collection (to buy less than he drinks or shares) and he refused. He would say I don’t give him credit for the things he did change, for example not having the TV or radio on when I am in the room.

John often made mistakes and sometimes he would get overstressed and not cope well, but he didn’t get really angry and he never once threatened to leave me. I got frustrated enough with his mistakes and inefficiency to push him to be evaluated for ADD, but then he wouldn’t take medication for it (except for sleep, which did help). I thought of it as a marriage that was balanced because we each put up with a lot—he put up with my healing journey and I put up with his forgetfulness and mistakes. Occasionally I could hardly bear it, as when he forgot repeatedly to take our son to his piano lesson. Thankfully he almost never forgot to pick the kids up from daycare or school.

John was interested in hearing about my inner journey, but he always said while he admired my ability to listen to what was inside me and to experience the world spiritually, he didn’t have that himself. When I was on a journey very specific to my childhood experiences that made sense, but in recent years I have tried unsuccessfully to push him to find his own way to grow. He always said he was content with himself; he didn’t feel any need to change.

It has made my life easier to have a husband who is never dissatisfied with anything. But oh I have wished he would try harder, hold himself to a higher standard. I wish he would try harder to fight his illness (for example by making exercise a higher priority). But he doesn’t fight me, and I should be grateful for that.

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