That sounds really rough, sorry you are going through this. I am also on disability and welfare and have a caregiver partner (so my benefits meant for 1 person have to be stretched for 2), but I do not have children (let alone disabled children). I’m guessing your wife isn’t able to eat the seitan after all? That sucks. Seitan is chewier than tofu or tempeh but you know your kids the best. I hope you hang in there. You are doing your best and it is appreciated. I’ve read about caregiver burnout before, the suffering the people around us go through is awful. Fuck the system we live in.
I’m not sure we’ve never actually found seitan around to try it. Wholeheartedly agree about the caregiver burnout and the way the system works though. So much “invisible” care work it just expected to be done for free with zero support it’s crazy.
The wildest part about that to me was that Medicare would pay me to care for her… if we weren’t married. But because we are I’m ineligible for that.
Omg yeah, the system does not want disabled people married!!! Once a disabled person marries, their disability income gets cut and chore services gets cut. What a load of bs, both partners need to have an income in this stupid economy just to be able to live and a partner will absolutely burnout without support. It’s the main reason I can’t marry. If I marry, I essentially lose all of my benefits (also how is a limit of $3k in total assets for a married couple fair?!). Disabled people are penalized for having any type of savings or assets like life insurance ffs. Even with chore services, insurance will makeup excuses like some hypothetical person is providing free support and thus they don’t give as many hours. Getting paid is a mess because of the EVV crap to “prevent fraud” aka just more spyware embedded in your phone. I’ve actually heard of people getting legal divorces just to get around this crap. Also people like me who can’t get married but are terrified of being found to be “holding out” on marriage which can cause benefits to be cut completely. I’ve read articles on people having children out of wedlock (not that there is anything wrong with that) simply because of the disability welfare system. IT SUCKS.
omg right? My partner and I probably wouldn’t have married either. At minimum not when we did, but we had a bit of a scare years ago with her late ex-spouse’s family possibly thinking about fighting me for custody of the oldest of anything happened to her during the initial health scare that put her on disability to begin with from the pseudotumor.
It’s a long story but the short version is that basically no court out here wanted to touch letting me adopt our oldest because they wouldn’t accept the proof that the other bio parent was deceased. So when she got put on disability and that overtook the survivor benefits we decided the best thing for us was to marry so we could guarantee a bit better that he stayed with me if anything happened to her.
That sounds really rough, sorry you are going through this. I am also on disability and welfare and have a caregiver partner (so my benefits meant for 1 person have to be stretched for 2), but I do not have children (let alone disabled children). I’m guessing your wife isn’t able to eat the seitan after all? That sucks. Seitan is chewier than tofu or tempeh but you know your kids the best. I hope you hang in there. You are doing your best and it is appreciated. I’ve read about caregiver burnout before, the suffering the people around us go through is awful. Fuck the system we live in.
I’m not sure we’ve never actually found seitan around to try it. Wholeheartedly agree about the caregiver burnout and the way the system works though. So much “invisible” care work it just expected to be done for free with zero support it’s crazy.
The wildest part about that to me was that Medicare would pay me to care for her… if we weren’t married. But because we are I’m ineligible for that.
Omg yeah, the system does not want disabled people married!!! Once a disabled person marries, their disability income gets cut and chore services gets cut. What a load of bs, both partners need to have an income in this stupid economy just to be able to live and a partner will absolutely burnout without support. It’s the main reason I can’t marry. If I marry, I essentially lose all of my benefits (also how is a limit of $3k in total assets for a married couple fair?!). Disabled people are penalized for having any type of savings or assets like life insurance ffs. Even with chore services, insurance will makeup excuses like some hypothetical person is providing free support and thus they don’t give as many hours. Getting paid is a mess because of the EVV crap to “prevent fraud” aka just more spyware embedded in your phone. I’ve actually heard of people getting legal divorces just to get around this crap. Also people like me who can’t get married but are terrified of being found to be “holding out” on marriage which can cause benefits to be cut completely. I’ve read articles on people having children out of wedlock (not that there is anything wrong with that) simply because of the disability welfare system. IT SUCKS.
omg right? My partner and I probably wouldn’t have married either. At minimum not when we did, but we had a bit of a scare years ago with her late ex-spouse’s family possibly thinking about fighting me for custody of the oldest of anything happened to her during the initial health scare that put her on disability to begin with from the pseudotumor.
It’s a long story but the short version is that basically no court out here wanted to touch letting me adopt our oldest because they wouldn’t accept the proof that the other bio parent was deceased. So when she got put on disability and that overtook the survivor benefits we decided the best thing for us was to marry so we could guarantee a bit better that he stayed with me if anything happened to her.