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, May 21, 2008

not losing myself

The most common thing people tell me is to take care of myself, not give up the things I do for myself. That comes naturally to me, I put a lot of importance on the things I do for myself, but I feel so much more hemmed in.

Yesterday I ran four miles on the track in the early morning, then did some work by email. I attended a computer conference at work for a couple of hours and then did some errands. I went with John to his first physical therapy appointment, then hurried off to go bicycling with a friend. We pushed ourselves--13 hilly miles in under an hour. I cooked dinner and helped our son reorganize his room for a little while after dinner and then spent time on my computer.

Most days have that kind of balance--a lot of different things to do and not much down time but some significant part of my day is things I am doing for myself and I don't feel horribly pressured. Today I'm having coffee with a friend then a few hours at work, then going to meeting of my spiritual directors group. Some days are busier and more stressful than others--next Wednesday I am hosting a job candidate and appearing at a hearing for a student accused of plagiarism in the morning and have a massage and an appointment with someone who comes to me for spiritual direction in the afternoon. But even then some of what makes my schedule so full is things I am doing for me.

The trouble is, this is summer. I'm not teaching and I'm only working 2 or 3 hours a day at work-related stuff. I don't know how I would do it all if I was actually working full time.

John can still do things alone--I can't image what it will be like when he can't. I found a college student to help him move out of his office at work and reorganize his study at home. That seems to be working well and I am very grateful (I wouldn't have the time or patience to help him myself).

I'm thinking that I need to think of it not only as not losing myself, but also as how do I find myself in this new role? Caring for someone who is dependent has never been my strength. I was happy to be able to go back to work limited hours when my kids were two or three months old and have them in day care 5 or 6 hours a day. I'm hoping that this blog will somehow be a way of finding myself in what I have to do.

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