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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Sunday, July 27, 2008

asking for what I need

I've been pushing John to pay more attention to feelings, both his and mine. Somehow it feels right to push right now, even though I don't think it is going to work. Instead, I'm beginning to see a middle ground that we can actually get to, at least for now.

I'm going to need to learn to ask for what I need, which has always been a weakness of mine.

Here is an example. We were driving the other day and I noticed an ironman sticker on the car ahead of me. I said if I ever do an ironman (long triathlon) I am going to be very tempted to get a small tattoo of the ironman symbol. John said "I hope you won't, that would be such a bad example for the kids." I was silent for a while and then said "I am a person too." He wanted me to explain that and then said I had the right to do what I wanted but he still hoped I wouldn't because he thought it would be such a terrible example for the kids. I'm thinking that instead I could have said: "See my feelings--I'm feeling sad that I probably won't ever be able to live my dream."

If I'm willing to tell John exactly what to do, he will be able to do something to meet my needs for longer. That is better than nothing. A wise priest once told me that where we can hope to get (though it is very hard) is to learn to enjoy the little bit that a limited person who is close to us can give us, instead of resenting what they can't give us.

2 comments:

Rana said...

For whatever it's worth, I did get a small tattoo on my left wrist about three years ago. I've never regretted it and it was, for me, an empowering act. I know that when my own run as a caregiver comes to an end, I will get another as a symbol of my survival. I haven't decided what that will be yet, but I am already thinking about it and the idea is one of the little comforts I keep to myself that really do help. (And I suspect your kids would be fine with you getting a tattoo.)

Joann said...

After so many years of being single, I can't really imagine being married anymore. I do think that most people do the best they can at any given time, with the knowledge they have at that moment. Failure at achieving a hope or expectation is hard, but at least knowing that the person did the best they could...helps me to know they are the limited, flawed child of God I struggle to be as well. I know you both are doing the best you can.