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Michele Pfannenstiel DVM's avatar

That was really interesting. I will go get this. I especially felt the part about public spaces and the shame associated with being in public. There was one point where my dad was going through chemo and my sons were under 2 and we went out to a 4:30 seating for dinner (really, my favorite time for dinner) and it was SO HARD. I was nursing, helping my mom feed my dad and generally trying to have a nice time because Dad was dying (he would be dead within a month) and someone actually came up to us and told me that we were making her uncomfortable. 💔 I could have died with the shame of it. And I just want to take that younger version of me and hold her and help her keep it together by telling her how much she deserved to occupy space with her family.

Thank you...I did not realize that I was still sad about that and needed to acknowledge that. 😔

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Melanie's avatar

I will be honest and admit I usually don't read the comments after reading the newsletter in my email, but this one sent me straight to the comment section to see what people had to say. I was not disappointed! Like others have pointed out, there's a huge difference in compelled vs. chosen caregiving duties. I have two thoughts:

1. I have a disabled son (currently 5), and he's the greatest source of joy in my life! And frankly it's disgusting how many people react to me disclosing his disability like I've just told them he has 3 months to live. Folks, this isn't a tragedy for me - this is the reality of my favorite person on the planet. For other parents in the same situation I recommend following "A Diary of a Mom" on Facebook (her disabled daughter is a young adult) because she highlights a lot of the joyful moments of parenting a disabled kid.

2. My husband has been parenting his mother since he was about 13 (and fully and intensively since age 25), and there are no upsides to parenting a parent, especially when that parent is unpleasant. She could live another 20 years! And morally we can't just cut her off (she is also disabled). But there's no feel-good book to be written about it.

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