Another Health Care Story

I didn't grow up in a family with a lot of money. In fact, we apparently started out poor. I didn't know this, because I was three and thought a walk shuffling through leaves was the best entertainment ever. But my mom and dad both worked really hard and my mom was a serious penny pincher. So, they saved.

By the time I started to notice, we were middle class. My mom was still a penny pincher, so we spent money on a schedule. I got birthday presents and Christmas presents and school clothes, but I don't remember my mom once, in my entire childhood, giving in to my whining and buying me whatever shiny bauble I saw in the supermarket checkout line.

My dad wanted to start his own business, so he did. For a while, it was great. And then it wasn't. That's not the remarkable part of the story since it happens to most small business owners. My mom kept working, so they would have health insurance. My dad kept at the entreprenuerial thing, first because he wanted to be his own boss, and then for other reasons.

I was 25 years old, and living 2,000 miles away, when the first signs began to appear. I told myself it was no big deal. It was normal for people to start losing their glasses when they got older. At 25, I still regarded 50 as "older". My parents also probably kept things from me, at least at first, wanting to protect me.

But after a couple of years, my uber-competent mother couldn't hide it anymore. She was making too many mistakes at work and the date book that she obsessively carried didn't provide her enough clues to avoid her manager's notice. She lost her job, and her medical insurance.

I was 27 and in denial. Something was wrong, but my mother couldn't possibly have Alzheimer's. That was for the really old people. It was something else and I was sure some doctor would figure it out. I don't think it occurred to me at first that my parents were now uninsured. And uninsurable.

Mom was too young for social security and no doctor in the public health system was willing to diagnosis her with Alzheimer's because that would mean signing a letter that meant she could get disability payments each month. As a result, she couldn't get the right drugs to help arrest the progress of her disease.

Not only were my parents 2,000 miles away from me, but they were also 2,000 miles away from their nearest other family. They had a kind of wanderlust and a hatred of winter that drove them west. So, although my dad hustled to make what money he could, he couldn't return to work at a regular job, because there was nobody else to take care of my mom. For five years, he struggled to get a diagnosis so my mom, who worked and paid into the system since she was 18 years old, could get help. During those years, they depleted their savings and reluctantly turned to family for help financially.

Finally, left with no other option, they came home and moved in with me. At that point, my mom still knew who I was, but she was losing her language ability. Within a year, she looked at me like I was a stranger in her house. My dad was still her primary caretaker, and she needed 24-hour care, so he didn't work.

After eight years and incontrovertible evidence, he found a doctor who would give her a diagnosis so that she could receive prescription drugs and a disability check. My dad spent a large chunk of the check on the drugs, both prescribed by her doctor here and purchased from an internet pharmacy located in Spain. Spain had Mementine, which hadn't been approved by the FDA, despite evidence that it slowed Alzheimer's.

Two years later, it became impossible to care for her at home anymore. We simply weren't equipped. She was still too young for social security and Medicare, but now they were poor enough for Medicaid, so we could get nursing home care.

For the final five years of her life, she was well cared for, and the government paid for it. After my parents spent every single penny they had ever saved. After they didn't have a car anymore. Or a house. My dad hadn't worked in years. This turned out not to be such a big problem at first, since if he went to work, the government would make him pay most of his earnings to the nursing home. So, he stayed with me for a little while longer.

A few years ago, my dad divorced my mom. She didn't know it, even though the nursing home was required by law to read the Divorce Decree out loud to her. He knew it, and I hate what it did to him. But still married, it would have been impossible for him to make ends meet.

For my mom, it wasn't so bad. After the first couple years, she never really understood what was happening. But for my dad, this is the reality of the United States health care system. My mom's illness destroyed his life and the health care system bankrupted him. Only a few years from retirement age, he was forced to start over.

Public health insurance wouldn't have saved my mother from an early death but it would have made the remaining years of her life a lot less stressful for her family, who were already reeling from grief and loss.

So when my senator says he doesn't support a public health insurance plan, I want to say impolite things back to him. I want to scream and rant and try anything to make him, a man born of privilege, understand that even when people make all the right decisions and scrimp and save and live responsibly for decades, it can all go up in a puff of smoke.

Something tells me he wouldn't care to listen.