It's raining here, and I have about three hours until Jeremy gets home from work... probably longer, considering he has to rely on buses – yes, two of them, with about a half-mile walk between the transfers. I mentioned that I was making those trips with him, but I quit doing that last week when the weather stopped cooperating. I've been staying home alone, and it's been okay but last Friday I had to pee so badly, and I couldn't wait. So I ended up trapped in the bathroom for an hour and a half, until Jeremy got home and rescued me. This bathroom is nowhere near as accessible as the one I had in TABCO. I about had a nervous breakdown getting onto the toilet, but it was either gather my courage and make a move or pee my pants. Once I got over to the toilet though, I couldn't get back off. There angle of the wheelchair is all wrong, and there's not much space in the bathroom to maneuver it.
Yeah, I'm still not fond of this apartment. I had a case worker (from the county, I think) come around today, asking me about how long have I been on the waiting list for Section 8, talking about finding me an accessible apartment. Asking if there were any one-bedrooms I could rent? How am I supposed to afford a one-bedroom when this place alone costs me exactly $100 less than I get from SSI every month? Where was this help three months ago when I called her organization and talked to my other caseworker (who has since left the organization), telling her that I was homeless? There aren't any accessible apartments. I can't even afford this apartment without Jeremy's help.
The case worker was here today because Jeremy applied to become my caregiver last month, took the CPR class and then here comes this caseworker saying “We have classes once a month, for free.” Telling me this after I spent well over $100 so Jeremy could take that class. Meanwhile, we are still waiting for his official paperwork, with his provider numbers on it. And this plan of care that has been submitted to the state still has to be approved before Jeremy can start getting paid. The forms saying he's gonna get paid $3.14 an hour. How is that legal? That's not the wage the nurse practitioner (from AERS) quoted us two/three weeks ago when she was here (though when I called her last week, she had no idea who I was or what I was talking about). That's not the wage that is quoted on several websites about how much caregivers in Maryland are paid.
Then there's the whole 'can't get a straight answer from anyone' problem concerning whether or not it's going to be an issue that Jeremy lives here and is my boyfriend/fiance. Because apparently you cannot get paid to be your husband/wife's caregiver, but parents who live with their children can get paid for being their child's caregiver. So sometimes it's fine if you live with your caregiver, sometimes its not. I'm not married, and never will be, but does engaged equal married in this case?
I'm dealing with three different organizations and none of them communicate with each other, and none of them seem to understand the rules because “they recently changed the rules” - you know, the mysterious 'they.'
But I can get the state to pay for my disposable diapers if I need them – I don't. And I'm really tired of these people trying to sidetrack me with what they think are shiny presents instead of helping me have someone in my life who will be around when I need to use the bathroom (rather than sitting around in my own shit until it's convenient for someone to come change my diaper). Because I qualify for 40 hours of caregiving and I'd like those 40 hours, but I need them spaced out all day so that I don't find myself falling on the floor trying to transfer back into my chair in the middle of the night because I had to pee. And I think that it would just be more convenient to have someone here all the time, who wants to be here all the time, and who just happens to need a job. Because if he isn't paid to be my caregiver, he has to be gone for at least seven hours, and that means I can't hydrate because I can't go to the bathroom from noon until after 7pm!
Like right now, it's 4:15pm and it would be a relief to use the bathroom, but nope... gotta hold it. Using the bathroom on other peoples' schedules has been the story of my life.
Not to mention I am pretty thirsty and my skin is all broken out because I don't get enough water.
Three organizations out there that are supposed to be looking out for me as a disabled individual who needs a lot of personal assistance and care, yet here I am waiting around for the next hoop to jump through so I can get the help I need.
Here, sign these forms.