Just a Little of That Human Touch?

I am lying on an emergency room gurney the morning of the day I am supposed to fly to Florida, my guts churned up and spilling out of me in a blood red rage.

It's been a stressful three weeks since my mother was diagnosed with cancer, most of it spent on the phone - arranging treatment, trying to figure out Medicare and Medicaid and figuring out where and how my mother will live once she begins chemotherapy.

Three weeks and now the house of cards is threatening to tumble down. We are caught in a Kafka-esque situation. A bureaucrat has yet to enter essential information into my mother's Medicare account that is required before the Cancer Care Alliance will honor her Feb. 8 appointment. I spend hours groveling on the phone with all the relevant parties, to no avail. I have a momentary feeling of hope when I speak to a Medicare supervisor named Charisma, but when I arrange a conference call between Medicare and the Cancer Care Alliance, I am at the mercy of a bland peon who cannot help me. Charisma cannot be reached.

So I try Aetna, my mother's new drug plan provider (if you are under 65, just for kicks, ask your parents to explain their Medicare Part D coverage. Want to really have fun? Ask them to explain the "doughnut hole.")
I find a helpful woman named Stephanie and I appeal to her sense of humanity. She rises to the challenge, enters emergency notes into various and sundry computer screens and takes the gutsy step of GIVING ME HER LAST NAME AND HER EMPLOYEE ID NUMBER and tells me to call back on Thursday and all should be rectified.

So once I manage to get my guts back into my body, I take the plane to Florida and wake up Thursday morning ready to hear the good news
from Aetna. Alas, no one can find records of my call. WHAT HAVE YOU DONE WITH STEPHANIE I want to scream, convinced she has
been vaporized for revealing too much. Finally, I am referred to The Center of Excellence (I am not making this up) where I am told that excellence entails initiating a status request to the Customer Advocacy Center, which, if I am lucky, will call me with an update, while I am on the plane to Seattle. Did you really think they would give me the phone number for the people who are supposed to be my advocates? There is no number, I was told ominously.

I've heard a lot of concerns that healthcare reform would go to the dogs if it's put in the hands of the government. But I have to believe that, as far as Medicare goes, the current public-private mix is the worst of all options, leaving the elderly at the mercy of one or more unnavigable bureaucracies. And when the people who work for those bureacracies are not empowered to deviate beyond "the systems" what we are left with is a cold, unresponsive, ineffective health care delivery system. Call me a socialist, but surely we can do better.

We'll get on the plane for Seattle tomorrow and when we land, I'll pick up the phone and keep fighting in the hopes that I don"t have to ask my cancer-ridden mother to wait a little longer for relief.

Up in the Air

I have a game plan, though it has as many questions as answers.

Some time in the next week, I will fly to Florida and bring my mother to Seattle for treatment at the Seattle Cancer Care Alliance. She is suffering so much pain and discomfort already that I am trying to arrange a medical mercy flight, but barring that, we will have to fly first class. I don't think the bigger seats, complimentary drinks and better food will be enough to anesthetize us during the five-hour flight. I'm not counting on the movie either.

In ever other aspect we are also flying blind. What will the doctors tell her about her prognosis? How will she manage the rigorous chemotherapy? I've read that chemo can make you so bone-crushingly tired that you can't even get up to wash your face. Not to mention the possible, nausea, diarrhea, mouth sores, dry eyes, itchy hands and feet and compromised immune system that makes you vulnerable to infection.

We will apply for Medicaid in the hopes that it will help cover the cost of an assisted living facility, where I had to laugh when I noticed that one of the residents is named Mick Jaeger. In Seattle my mother knows no one but me. What will it be like for her to be isolated and ill in such a place? Even on her good days, it's hard to imagine my independent, younger-than-she-seems 75 year-old mother enjoying group meals or the bingo games and weekly outings to the drug store that I was told are the highlight of the residents' lives.

So my germ-ridden family and I will be her portals to the outside world. Over the past week I've begun adjusting to the fact that I will soon become a care-giver and will have to give up some control over my life. It's been hard so far to deal with all the logistics, but I've been able to take a break from cancer whenever I wanted, taking a run, hosting a birthday party, drinking wine with friends.

Now for me, every day will bring new, unavoidable responsibilities. And for my mother, unavoidable struggles.

We will truly be up in the air, hoping for a safe landing.