Why Health Care Reform matters so much to me

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My parents were divorced December 1999. In the divorce decree, my dad had to pay for my mother’s health insurance through COBRA for 18 months.

Fast forward to the winter of 2001, my mother fell at work and hurt her back. She crushed 2 discs and nearly crushed a third. Her employer had good Worker’s Compensation insurance and she was given really great care. Because of the damage done, surgery is ruled out but pain management seemed to keep the pain under control.

Fast forward a few more months: COBRA ends. My mom now tries to find health insurance on her own. Due to preexisting conditions (the bad back and rheumatic heart disease – left over from two bouts of rheumatic fever as an adult but which NEVER bothers her nor does she even take medication for) she is denied by company after company.

Fast forward to Spring 2003: Mom gets a cold.

Over the next few months, the cold progresses to bronchitis. Her doctor wants a chest x-ray. She asks how much an x-ray will cost. $2000 she’s told. “I don’t have $2,000,” she says. She takes a breathing treatment and a script for antibiotics and goes home.

A few weeks later, it’s worse. She can barely breathe and after I beg her, she allows me to take her back to the doctor. $300 dollars later, they tell her they think she has pneumonia and still want an x-ray. Still she says she can’t afford an x-ray.

Another breathing treatment and more antibiotics and back home.

A few days later, right after Thanksgiving, she calls me at 10PM. “I can’t breathe.” She pants into the phone. “Can you take me to the hospital?”

She can’t afford this either but it’s too late for that.

When we get her there, her blood saturation is at 84% and an x-ray shows a left lung almost completely solid white on the screen. It’s pneumonia they say. But I can hear in their voice that they think it might be more.

She needs to be admitted. Mom fights back just a little, but she’s thankful for the oxygen tank making breathing easier so she doesn’t fight too much.

Daily breathing treatments and oxygen make her feel better over the next few days while the doctors run their tests. She’s worried about paying for all this but she’s told that Medicaid may pay for part or all of it. After all, her only income is worker’s comp and a little disability check we were finally able to get for her.

I’m Mom’s advocate in this. She’s given me power of attorney so I can keep things going and sign whatever needs to be signed. I meet with Medicaid. I come up with TONS of paperwork and copies of bills. It will take a few days to process.

Meanwhile, we’ve finally got a diagnosis. Pneumonia yes. But also 4th stage small cell cancer. Mom rejects the doctors’ advice to take chemo. She wants to feel as good as she can for as long as she can. She comes home for a few days, then needs to go back to the hospital. She gets weaker.

I’m still waiting on a decision on her bills. Mom asks me everyday. I tell her truthfully that I don’t know and that I’ll call. I leave message after message and get no reply.

Finally, I find out that the caseworker on the case is on maternity leave and they are still sorting through her files. Her replacement is unfamiliar with the case or even with Medicaid cases. He generally works in Child Protective Services but will get back to me in a few days.

The next notice I get is that Mom’s case has been denied. She’s got too much money. I appeal, including a copy of my mother’s checking account statement which shows a balance of just over $1000. I also include a copy of the bills that have come in so far amounting to over $50,000.

Mom, meanwhile is getting worse. Her doctor, who is also my doctor, suggests hospice and gets her into the lovely hospice that is part of the hospital.

Mom seems to hold it together mentally until after the move to hospice, then she deteriorates quickly becoming paranoid and delusional. The cancer, the doctors have told me, has spread to every part of her body including her brain. She is increasingly incoherent, but has occasional lapses of coherency. “Have you taken care of the bills? Did the Medicaid come through?” she asks.

I lied.

I lied to my dying mother and told her that yes, everything is fine.

Meanwhile, I’m worried. The hospice wants to know how they will be paid. The doctors are beginning to send nasty letters. Even the ambulance that took her to the hospice from the hospital are getting antsy.

I lie to my mother every time she comes around enough to understand. Even when she and I talk three days before her death, she brings it up. I lie to her again and tell her, “Everything is taken care of. Just rest.”

What else could I do?

Two weeks after her death, I get a letter. The temporary caseworker has been reassigned and the new one on the case approves her care and all the bills disappear almost overnight. I have to send a letter with the case number to a few, but for the most part everything is taken care of.

I don’t tell this story to prove why government shouldn’t be in charge of our health care. The caseworker who denied Mom’s coverage didn’t know what he was doing and wasn’t even in his proper department. So I don’t blame Medicaid. My mother still received the best possible care, I think, because everyone knew that Medicaid would pay.

I tell you this story because I feel that if my mother had had health insurance when she first got sick then she might have gone to the doctor sooner. We might still have the same result – afterall, my mother had smoked for nearly 40 years. But she would have had some assurance that everything was taken care of and I wouldn’t have had to lie to my dying mother.

You cannot possibly understand how a situation like this tears your soul apart unless you live through it.

During the grieving process, I attended therapy and one of my biggest problems was the guilt I felt for lying to my mother while she was dying. Now, I just get angry. She should have had another option. There should have been another way.

My mom wasn’t a deadbeat. She wasn’t someone riding the coat tails of society. She was someone who paid her taxes; who voted in every election; who baked brownies for my class when I was school; who was active in her community; she was just LIKE YOUR MOTHER.

3 thoughts on “Why Health Care Reform matters so much to me

  1. Thanks for sharing your story Amanda. It really touched me and I can certainly appreciate why you feel the way you do. I hate you had to endure that and especially the your mom had to endure it. I know you hated lying to her but you did exactly the right thing for her peace of mind.
    I don't agree with most of your political views and certainly not with the healthcare reform currently before congress simply because it hasn't been truly reviewed or even read by most of congress or the public. I would like to see reform too but I want it to be done correctly and fairly. They all need to sit down and go through it line by line (as promised in the campaign) and keep the good and toss the crap and improve where possible. I'm really frustrated with both parties because it isn't about the party, it's about the people (your story really drives that point home) and I think both sides have completely forgotten that, since apparently they are all above the laws they pass on the rest of us.

  2. I miss her. If only she could have met her granddaughter. Thank you for sharing this, babe. I didn't know these details, and they make me want to fight even harder for Universal Health Care.

    Truman tried to give it to us in 1948. 3 generations have risen since, and yet those damn politicians want "more time". Let's put Congress on the Minimum Wage and do away with their current health care system.

  3. I'm sorry about your mother and the situation you went through. I truly am. However, the proposed healthcare plan is, most definitely, NOT the way to go. Look at the widespread failure of socialized medicine in Canada and Europe. Substandard care, lengthy wait-times to get to see a doctor, no incentive for excellence in medicine. Yeah, it's free, but you get what you pay for.

    The wheels are coming off the "Obama Express" and it is a beautiful thing.

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