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Trying to move ahead
I get it, I see it, and I am living it. I know my fiancĂ© is working hard; he has worked hard to get to where he is. I see Drew for who he is and not what he is not. He is a great lawyer, a great lawyer: very understanding and very upfront and honest with his clients. But I see that hiring managers don’t see him move up. I feel like all they see is the wheelchair or me (the caregiver). They don’t see how hard he has worked to get where he is. how he has to support his family since I am with him the majority of the day because we can not afford a caregiver. How, instead of working two jobs, we can live comfortably with this new job. No one is giving him a chance. The anxiety, the fear, the overthinking. I feel for him emotionally. It is just not fair. We want to plan a wedding that we pay for, get out of debt, save as much as we can, and go out as a family. But it is hard. We have medical bills that we have pushed aside, the medical bills that are not covered by medical insurance. We have credit card debt that we maxed out because he was sick and hospitalized. We are now trying to catch up. I want to help besides just being his caregiver. Aside from taking care of the house, our family, Drew. We just want to move ahead without worrying so much. How? Why? When? I don’t want Drew to be burnt out. I don’t want him to stress. Because Drew is a very hard worker, fiancĂ©, and stepdad regardless of his disability. His disability does not define him. Sorry if I am rambling. I just wanted to get this off my chest.
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5 Replies
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Life with SMA is simply very difficult, full stop. We are all trying our best. In regards to your post, I assume Drew is unable to get care givers due to his income? It’s a terrible system. I would suggest maybe having Drew or yourself look into a financial service that specifically deals with these types of issues (i.e. how does one continue to receive state support if they have to “gall” to get a decent paying job). I’m in the midst of trying to navigate this and am no expert (so please take any advice with that grain of salt) and it also varies state by state, but firms like “Protected Tomorrows” or similar may be worth at least reaching out to for an initial discussion.
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Hi, Diane. First and foremost, please don’t ever apologize for venting here. That’s what this forum is for. 💛 Your feelings are so valid, and trust me when I say that you’re not alone in these feelings. We are so much more than the box society puts us in simply because of our disability. Drew is so lucky to have you, but by the sounds of it, you’re just as lucky to have an amazing man like Drew, too. Is there anything I can do to support you at this time?
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It’s a really hard and tough situation. I run a side business just to pay for my morning help, and I have some amazing neighbors who help me into bed at night so my wife doesn’t have to be my caregiver (except in emergencies). I spent 10 years working for a place as a sort of techie jack-of-all-trades, and being known as the guy to bring a project to if you needed it done yesterday, my hard work was rarely rewarded, especially in the advancement/promotion department. I’m now at a much better company (though the bureaucracies of upper management are still dumb), it sometimes takes a little rocking of the boat and speaking up. I’d love to try and help you guys any way I can.
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Thank you, readers. At this time, I don’t think there is anything anyone can do. I am trying to get remote part-time work so Drew doesn’t hold a burden. He tells me I don’t have to, but I want to. We have contacted the local county for any assistance, but the income he has is far beyond the minimum basics. He had IHSS before, and it got terminated due to his income. It’s not fair to the many people who are in the same unfortunate situation. It’s damned if he does and damned if he doesn’t. I am just trying to make sure he is healthy and try not to get sick. I am learning what I can, when I can about his disability. how he can be more independent. so thank you.
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Diane, we know. It’s a terrible system that forces us to live at the poverty level before qualifying for help and punishes us if we actually have a decent job. It’s set up that way to discourage fraud, but it makes it more difficult for those of us who actually need help.
Ramble and rant when you need to, just saying these things out loud actually helps you get a handle on things
One thing you could try is start fighting with the insurance companies. They count on our fatigue at the end of the day after they have denied a claim once or twice or three times. But if you are more tenacious, you might actually make some headway.
Another thought is to offer one of the firm interns extra one on one mentoring working on cases in exchange for some caregiver duties like eating. Not for bathroom assistance, but it could help free you up from other tasks. That might also show management that he’s investing in the firm’s future.
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