My sister is in a wheelchair

Sometime in February, my sister had a small stroke. She didn’t notice the change — or if she did, she’s never said so. We didn’t notice it then either, but it did begin to damage her brain in a way that mostly seemed to manifest in her handwriting.

We’re tough women in my family, so when this stroke failed to achieve its mission, another four followed by June. These were much more effective and removed my sister’s ability to make her right side obey her will. She could no longer write, feed herself, read, walk, drive, or live on her own.

Why am I telling you all of this? Because we need to talk about healthcare costs in this country. And maybe by making it personal, we can begin to have that conversation.

Some stats

Americans spent $3,300,000,000,000 (trillion) on medical expenses in 2016. And we’re only getting older and sicker.

One in six Americans has past-due health care bills on their credit report with medical debt totaling $81,000,000,000 (billion) in the US. In 2015, the Kaiser Family Foundation found that medical bills forced 1 million adults declare bankruptcy.

A 2016 survey from the Kaiser Family Foundation and New York Times found that 26% of Americans between the ages of 18-64 said they had problems paying medical bills. That same study also told us that 52% of debt collection actions in the US contained medical debts

the reality

It was $1500* for my sister’s first ambulance. She was in the hospital for ten days before she was stabilized enough to be moved to a rehabilitation center for physical and occupational therapies. Each night in the hospital was more than $4000. The rehabilitation facility kept her for another two weeks at $3300 per night. There, she got daily treatments and therapy from doctors and nurses in an attempt to help make her self sufficient again. As of today, this has failed.

Once her insurance stopped paying for the rehabilitation center and all of the care there, my sister had to be moved. She lived alone before the stroke and that was no longer possible. It wasn’t feasible for my sister to live with me (third-floor walk-up building) or my dad (a flight of switchback stairs) or my brother (750 miles away).

So, this meant finding a care facility where she could live. I’m not sure how old you or your parents (or grandparents) are, or how much research you’ve had to do about assisted living facilities by now. Frankly, they’re not great. But they are expensive. Very, very expensive.

For one month, you’re looking at an absolutely horrifying facility to come in right around $3000. For someplace where awful things still happen more often than you’re going to be comfortable thinking about, we’re talking more like $8,000 per night. Some will charge an initial fee of $200,000 to move in — on top of the monthly. But don’t worry: you’re family gets that back after you kick the bucket. To be clear, my sister isn’t in one of the Cadillac facilities. Hers is nice and safe and nobody has died there from neglect.

That we know of.

How much does this all cost?

Those monthly fees I mention usually include things like 24-hour staff, room, board, entertainment, cable, and basic care like administering meds, checking vitals, and a doctor’s drop in once per week.

“My sister also had pretty good insurance and a pension to help cover the initial costs. But what keeps me up at night is when that money runs out. It’s that word: had. ”

It does not include the cost of those meds or any doctor’s visits that are off site to see your own physician. Or physical and occupational therapy at $100 a pop after the first 20 were covered by insurance. Or trips to the emergency room (Another $1500 for the ambulance. Every time. Cha-ching.)

But my sister is tough, remember? So, assuming she stays exactly as healthy as she is right now, she could easily live another 20 to 30 years. Even on the low end of expenses, that’s more than $1,200,000 in expenses to keep her alive. Not well, but alive. And the average nursing home rate is actually $97,450 per year. (ps, that’s a good number to guide your savings goals, by the way.)

Thankfully, my sister has an unsinkable spirit. She is unfailing cheerful in the face of all of this. Frankly, that’s a miracle that I think the strokes did for her. It takes an elephant gun to take down her mood.

The money is running out.

My sister also had a pension and pretty good insurance to help cover the initial costs of her care. But what keeps me up at night is when that money runs out. It’s that word: had.

My family helps all we can, and her friends have done what they can, but they’re toughing it out through their own stuff. Even if she had saved every penny from her salary for 22 years of working, it still wouldn’t be enough. Eventually, we won’t be able to afford the nice place she is now and she may have to go to one that they write about in the newspaper or do exposés about on 60 Minutes.

Medicare doesn’t cover assisted living rent. Medicaid kicks in only when you have no other assets, and doesn’t exactly cover the sort of place you’d want to find yourself. Anyway, even it has limits on how long it will pay.

That’s what keeps me up at night. And there’s nothing I can do to stop it because being sick in this country seems to be designed to bankrupt you.

Is that what we want for our sisters?

*all costs are pretty accurate estimates. I am not an accountant, nor am I a medical billing expert.