#4. There Isn’t Much Help From Outside
So, mom can no longer work, and her daughter is giving up her career to stay home and care for her. What kind of help can you expect in that situation? Turns out it’s just enough to keep things terrifying. “My mother requires a hearing aid. The first hearing aid is free, but the dog chewed it up. The second one will cost $300 dollars. That’s a third of her social security.”
Elice’s friend we mentioned earlier has spent thousands of dollars on special equipment for her daughter. But, even that becomes an expensive waiting game at times. “She is fed through a tube that connects to a button in her stomach. The tube burst over the weekend … now, the medical supply company doesn’t want to replace it until late January ‘when she is due’ … using the same tube for six weeks when it’s supposed to be changed weekly won’t be safe; the tubes can’t be cleaned thoroughly enough to keep mold out of it. Another parent on a support group Facebook page has the right size tubes and is willing to send them.”
“Connect to friends, family, and desperately needed, necessary living equipment.”
Yeah, these guys are left high and dry by their insurance companies and have no one to turn to but each other. It’s either that or try to get yourself investigated by protective services. “My mother likes to walk barefoot because she’s a country girl at heart. We had protective services called on us. We had to be watched for a month. After that, all of the resources we weren’t offered beforehand were [offered to us]. She got speech therapy for about a month after that. But, when they realized she was being properly taken care of, those things slowly tapered off.”
And, according to Elice, it really doesn’t matter whether you get paid (a measly $9 an hour, by the way) or decide to do this work for free — no one treats you like a hero for the sacrifice. “My best friend doesn’t work. She can’t. There is no day care that will take her child due to her special needs … she is on food stamps and in [subsidized] housing, and she lives on the money that is provided to care for her children. She gets judged because she looks like a healthy woman who just doesn’t have a job. If you keep your parent at home and you get paid for it, you are lazy … if you put them in a nursing home because you can’t take care of them, you are a bad child … ” There is no winning here.
If this person qualifies as ‘lazy,’ then the rest of us are damn near comatose.
And even the paycheck is surprisingly tenuous.
“Because of the arrangement the state has, we are private contractors. We are legally not allowed to unionize. If my mother is hospitalized, I don’t get unemployment. I have no protection … she went to the hospital for three weeks, and for three weeks, I didn’t work. I had no job to go to.”