Old, poor, and chronically ill in New Jersey

I take a deep breath and let it out ... once again ... and again ...

The mood swings of frustration and anger alternating with appreciation and euphoria through bouts of deep depression ... ebb and flow through my psyche as I deal with old age, poverty, and chronic kidney failure.

I get the feeling that most everybody has enough troubles of their own so I shouldn't be bothering anybody with mine. What am I, a wimp? "Suck it up and move on."

Well, in my circumstances, "sucking it up and moving on", is dying. So, if you don't mind, I think I'll explore some other options, thank you.

Let me describe the latest Catch-22 situation I find myself in. I was scheduled to have a surgical procedure this Friday, September 2, 2005, (like, tomorrow) which would allow me to go on in-home dialysis shortly. (Which to my understanding saves the State of New Jersey and Medicare a considerable amount of money over traditional dialysis, but I could be wrong--I'll ask for the facts next time. In any case, it leaves me far more mobile and actually will be better for my body, if I can be on it.)

I was doing all my pre-admission stuff and everything was on track--or so I thought--when I received a call on Tuesday, August 30, from the hospital's Financial Aid Office "reminding" me that I had an appointment with them the next day, Wednesday, August 31, at 10AM.

That was the first I had heard about any appointment with the hospital's Financial Aid Office ... and the communication deteriorated from that point on ... so I cancelled my procedure on Friday thinking the responsible thing to do would be to resolve the financial questions BEFORE I had the surgery. Because if it wasn't covered by some form of financial assistance on top on my Medicare A and B, then I had better rethink what I was getting myself into. (I have learned from experience that it is best to have these issues resolved ahead of time rather than afterward. I'm still paying off medical bills from 2002 that weren't covered.)

Anyway, I started asking questions about whether I qualified for Financial Assistance and they responded by telling me that I had to be committed to the procedure before they could give me that information.

Now, this sounded VERY strange to me. Here I have been reading all this stuff about the patient needing to "take charge of his/her medical care". So shouldn't I have the information I need to make a responsible decision? Like, can I afford what you're going to do to me? And shouldn't I have some kind of a reasonable estimate (like the range of possibilities) for what the outcome might be in terms of cost?

See, I had been going along thinking I was covered at this hospital, because I was covered at my other primary hospital, but, no, they said they couldn't tell me that ahead of time. The way I was understanding what they were telling me was that I had to accumulate the bills and THEN they would tell me whether or not the financial assistance program would pay them. How strange is that?

My first recourse was to contact the Social Services department of this hospital and review the situation. They basically told me that that was how this particular financial assistance program worked. When I replied that that put me between a rock and a hard place ... they offered to put me in contact with someone higher up in the Financial Aid Department. When I then asked if I could have something like a patient advocate to act as a mediator because otherwise I would talking to the person in charge of the rules which I was questioning. The Social Services response was that all they could do was refer me to the Financial Aid Supervisor. I told them that would be too stressful of a situation for me. They replied, "That's your choice".

I next went back to the surgeon's office. They informed me that I had to work it out with the hospital.

My next recourse was to share all this with a person in Essex County's Division of Aging. Here I began to make headway. This person and this department has been of great assistance over the past couple of weeks as I have been trying to sort out my health care options. She immediately responded and located a person in the hospital's geriatric department whom I can contact.

I went from frustration and anger to appreciation and euphoria, then settled into depression. I told the Division of Aging person how much I appreciated her help, and that hopefully I would have the emotional energy to pursue the contact by next week.

It's true growing old and being poor ain't for wimps. I'll let you know how "chronically ill" works out in the short run. In the long run, we're all dead.