Late summer, my husband had a lump on his leg (it was nothing serious). I thought it might be a blood clot, though it looked different than when I had mine in 2007. We made an appointment. He was reluctant because he's my only caregiver, and we don't have access to much backup if he ever has to stay in a hospital.
Hoping to assuage his fears, I contacted my insurance team to ask about the protocol of getting home healthcare on short notice. My case manager went through what we could expect... how nothing could be guaranteed. I could be home alone for days before they could find a company willing to assist me. I literally can't live on my own.
After we went around like this for a while I said: "I'm going to be blunt, I know I'd be f*cked."
My case manager replied: "Well Jennifer, that's the risk you take... living like you do."
She then went on in a rush about how good my husband and I are together. But, it couldn't smooth over what she said.
Living like I do... like my behavior is skydiving late at night or drag racing. It's dangerous to not befriend people just so they can help me toilet if my husband is indisposed. It's kayaking down Niagara Falls because my family is unable to fit another crip into the mix.
What other choice do we have? Should I divorce him and become institutionalized so I always have care? Should I put up flyers around my apartment complex for emergency aides? If I want to have as close to a normal life as possible, to have what most people do, I'm engaging in high-risk behavior.
Calling my life "risky" because I choose to live with my husband who, in turn, chooses to be my caregiver seems like a scapegoat. If I roll on the wild side, it's not the responsibility of the insurance to grant me speedy, competent access to care. It almost sounds like they're saying, "It's her own fault if we can't help her immediately". The system has no plan for folks like me... at least not any good ones.
I saw my case manager differently after that.
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End note: I realize scheduling and paperwork take time to process, but there should be a program in place for crips to join that can be activated within hours... like emergency respite care for those without other options.
Jeez Louise. "That's the risk you take, living like you do." I agree that comes across as outrageous. You're hardly choosing to run in and out of traffic with your hair on fire, or asking to be shot out of a cannon.
ReplyDeleteApparently, disabled people are supposed to have potential helpers lined up around the block. I have two friends and a small handful of family members... period. Some are disabled themselves, some are children, and some have full-time jobs.
DeleteIt's the "living like you do" that really got me when I read this post . . .because of course, you're living the way you can, which is all anyone does. That American Individualism comes back to bite us all the time--all of us need others to help us . . . some of us are forced to admit it more often by circumstances.
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