A post that I wrote as a reflection on the events of Easter
My apologies in advance, I don't mean to offend anyone currently in this situation.....
Today, I had the opportunity to go to Easter lunch at an adult group home, as my caregiver today also works there sometimes, and was invited to several parties by friends and coworkers today. I said I wouldn't mind going, so she chose this one because it was closest and most accessible.
All the people there were really nice and really happy to have me, and the old people were great, but it was really awkward because I didn't know what to say to them. They seemed oddly content just sitting inside watching TV on a beautiful day! When we were eating, all our food was spooned out individually and nobody tried to serve themselves. I was asked at least 6 times if I needed help cutting my food. I said no and still tried to cut it with a fork, which took a bit longer but I did it. Then the other lady told my caregiver to stop helping cook and come cut my food, even though I didn't ask her to. When she said "she doesn't want that" she said "well obviously she can't do it herself, she's probably embarrassed, I would be, too!" So she brought over a knife and was going to cut my food, and I said I'll take that and promptly cut my own food (much faster) with the knife.
Then while the old people and I were visiting, my person was talking to her coworker in the corner and was explaining how I receive services and scholarship and stuff. I wasn't so much concerned about this information as the fact when my caregiver said "Ask her, she'll tell you all about it, and I looked over, ready to respond because I knew they were talking about me, her coworker said "oh no no" in a hushed voice like they weren't supposed to be talking about that in front of me, or that I wasn't supposed to know what was going on.
I'm sorry, but I don't live in a world where I'm told when I can eat, shit, sleep and go outside, and I'm going to work very fucking hard to keep it that way. I may need some help with some of those things but that is directed by me, not you. And no, of course you just didn't tell a resident that she can't take a nap because you don't feel like helping her back up, and when she said "That's ok, I'll do it myself" she was not "allowed" to do that.
Being here today really made me miss my great grandma and auntie, both of whom passed within months of being in a facility. They are (still) two of the most stubborn mules I know and would not put up with any of this shit. Great Betty said it was like prison, after living in her own home for almost 93 years, and Anne ran away from the facility after losing a lot of her decision making skills from a stage 4 brain tumor, but she was adamant that she would die in her own home, under her control. She was the one who taught me how to advocate for myself, and is still one of the most badass people I know. I sincerely have no problem calling her my hero. I know some of you have had to deal with this out of necessity and I suppose you get used to it, but I support you in solidarity of making change for a community based system so that we can take control of our lives. These people may be old and forgetful, but they ain't stupid! Breaks my heart! Miss you guys so much ♥ ♥ Just writing this brings tears to my eyes. RIP ♥
Today, I had the opportunity to go to Easter lunch at an adult group home, as my caregiver today also works there sometimes, and was invited to several parties by friends and coworkers today. I said I wouldn't mind going, so she chose this one because it was closest and most accessible.
All the people there were really nice and really happy to have me, and the old people were great, but it was really awkward because I didn't know what to say to them. They seemed oddly content just sitting inside watching TV on a beautiful day! When we were eating, all our food was spooned out individually and nobody tried to serve themselves. I was asked at least 6 times if I needed help cutting my food. I said no and still tried to cut it with a fork, which took a bit longer but I did it. Then the other lady told my caregiver to stop helping cook and come cut my food, even though I didn't ask her to. When she said "she doesn't want that" she said "well obviously she can't do it herself, she's probably embarrassed, I would be, too!" So she brought over a knife and was going to cut my food, and I said I'll take that and promptly cut my own food (much faster) with the knife.
Then while the old people and I were visiting, my person was talking to her coworker in the corner and was explaining how I receive services and scholarship and stuff. I wasn't so much concerned about this information as the fact when my caregiver said "Ask her, she'll tell you all about it, and I looked over, ready to respond because I knew they were talking about me, her coworker said "oh no no" in a hushed voice like they weren't supposed to be talking about that in front of me, or that I wasn't supposed to know what was going on.
I'm sorry, but I don't live in a world where I'm told when I can eat, shit, sleep and go outside, and I'm going to work very fucking hard to keep it that way. I may need some help with some of those things but that is directed by me, not you. And no, of course you just didn't tell a resident that she can't take a nap because you don't feel like helping her back up, and when she said "That's ok, I'll do it myself" she was not "allowed" to do that.
Being here today really made me miss my great grandma and auntie, both of whom passed within months of being in a facility. They are (still) two of the most stubborn mules I know and would not put up with any of this shit. Great Betty said it was like prison, after living in her own home for almost 93 years, and Anne ran away from the facility after losing a lot of her decision making skills from a stage 4 brain tumor, but she was adamant that she would die in her own home, under her control. She was the one who taught me how to advocate for myself, and is still one of the most badass people I know. I sincerely have no problem calling her my hero. I know some of you have had to deal with this out of necessity and I suppose you get used to it, but I support you in solidarity of making change for a community based system so that we can take control of our lives. These people may be old and forgetful, but they ain't stupid! Breaks my heart! Miss you guys so much ♥ ♥ Just writing this brings tears to my eyes. RIP ♥
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