I took on a second job two months ago. I hadn't intended to do that - I've got a full time job and a family. But my father has needed health care, and it has taken that kind of time to get the providers to provide, and the insurance company to cover. And frankly, I should be fired. Because I haven't gotten him nearly the assistance or coverage he needs.
My father, a 78 year old who has lived alone for the past 30 years, had increasing difficulty walking over the last two years. He lives in N.Y.C., and like so many older people, had difficulty navigating the health care system. I live in upstate N.Y., and offered to help, but pride and embarrassment seem to have limited his ability to accept assistance. Finally, after two years of believing he had a broken bone in his foot, we learned he had spinal stenosis.
The last two (or was it three) years were exhausting for him - living with increasing pain, and slowly losing his mobility. He saw doctors, podiatrists and who knows who else, was given a cast for his ankle and orthotics, but nothing worked. Each professional failed to order necessary tests, and failed to coordinate with other doctors he'd seen. But finally, after I gave him a list of questions (he didn't want me talking to the docs) to ask his doctors (if it was this condition, what would it take to diagnose, if not, what was the next step, etc.) and perhaps the doctor's recognition that the lawyer daughter wasn't going to let this lie, we got the diagnostics - MRI, x-rays, etc., and finally a diagnosis.
A diagnosis - scary, requiring surgery, but at least an answer to what was going on, and a potential cure.
So then the research on doctors began. And the frightening revelation that my father's insurance plan (yes, he has insurance) covers very few neurosurgeons, none at some of the best hospitals in N.Y.C., and a very few at some of the better ones. But after hours and hours of getting names from the insurance company, calling doctors' offices, often learning they no longer accept Oxford, we finally found a surgeon who appeared qualified and who was accepting patients and this insurance. Surgery was six weeks ago. Five days later, with a brand new cervical spinal wound from the surgery, titanium in his neck, weakness and more, my father was released to...home. The hospital claimed he was ready, the doctor claimed the inpatient rehab would be worse than home, and the insurance company said he wouldn't be able to go to inpatient rehab. Truth be told - I think he sabotaged that option a bit too.
Not to worry - the insurance company provides four hours a day of aide service. Great - except he couldn't get out of bed or out of a chair by himself. He couldn't walk up the stairs to his second story apartment. He certainly couldn't get food or even open his meds. (Yes - we invited him to live with us though he wouldn't have insurance up here - thanks Oxford - and couldn't switch to Medicare until November - but he declined, and really, I'm not sure how we would have done the transportation.)
More hours and hours of calls, till we lined up private pay care (at an extraordinary cost per week). And then the Visiting Nurse Service decided since we had private pay, we didn't need the aide four hours a week. Except our private pay aide was up half the night with Dad when he had to use the bathroom, and wouldn't call for help, and would get stuck half on, half off the floor. So the four hours really was necessary. More hours on the phone, and another week of four hours a week. Till the VNS told me my father didn't need their care any more. He could get up just fine - out of bed, out of the chair, he could do it all. More private pay. Finally, four weeks into it we thought he could get out of bed by himself - my father said so, the nurse said so, and the private pay aide was afraid to say he couldn't, so we took off the night aide. Next morning I get a call as I'm getting ready for work at my home in upstate NY - he's on the floor and he's crawled to the bedroom from the bathroom where he fell - the proverbial fallen and he can't get up. Of course, he hurt his foot in the fall, so now we need more weeks of private pay.
We're the lucky ones. We have been able to pay for the private care. My father, stubborn, has chosen not to stay with me, but has the option to if he wants to. (Of course, his lousy insurance company - did I say Oxford? - won't cover out of network care where we live, but won't recognize he can't live on the second floor and get the care he needs.) We're lucky because he's got an advocate who has fought for the little we've gotten and has been able to coordinate some services for him. But this has become my second job.
The challenge of dealing with illness and disability is hard enough. And for those of us who have good health insurance, or few needs, we may not choose to pick that battle as ours. But eventually, all of us will need insurance and will be told something is not covered. And by that time, we'll be so consumed by that battle that we can't fight the broader one.
We all need to fight this fight now - for strangers, for our loved ones, and for ourselves.