It’s Not Your Fault
The emails come into our inbox. “Please help,” is usually how they start.
What so often follows is the same story with only slightly different details. A 90-something parent, living on social security, has fallen, gone to the hospital and now needs rehabilitation to get up and walking again. And Medicare – the health insurance program that covers nearly all older adults – would pay for the skilled rehab care but for one thing. The hospital never admitted the parent as an “inpatient”, despite a multiple night stay. Instead the parent was admitted under “observation,” which doesn’t count as an inpatient hospitalization. And without three nights of inpatient care, Medicare won’t pay for the subsequent skilled facility services.
In this nightmare situation, the caregiver is left with two bad choices. Spend upwards of $10,000 or more out-of-pocket for the skilled rehabilitative stay or bring an immobilized parent home. When families hear this news, they feel depressed, frustrated, and angry. But most of all they feel worried.
Caregiving is hard for a whole bunch of reasons. It takes your money, your time, your ability to work, your friends, your relationships. You have little time to do the things that you love, or to even just take a rest. In addition to handling the day-to-day care needs of your aging parents, you find yourself negotiating challenging family dynamics, balancing demands of work and children alongside a parent’s diminishing capacity, and all the financial stress it all entails.
But there’s another major reason it’s so hard. The overwhelming frustration of trying to protect your parent within a healthcare system that’s rigged against you. A system so dysfunctional that the label a hospital puts on your parent’s visit – can mean the difference between being able to recover the ability to walk … or not.
This brings me to what inevitably comes next in these emails. The question, “What can I DO?” The caregiver has “tried everything,” has pleaded with the hospital, with the skilled nursing facility, and is at the end of their rope, wondering what else to try.
And, almost always, the answer is that there’s nothing else to try. This problem of the hospital classifying patients in a manner that deprives them of the Medicare benefits to which they are entitled… this problem is much bigger than any of us. “I am so sorry,” I always type. And then I explain that it’s about conflicting government rules. Rules that have affected tens of thousands of families. Alison Kodjak’s, National Public Radio’s healthcare reporter describes it beautifully writing about her mom’s experience. “Now my mother had paid into Medicare her entire working life, (…) but because of dueling rules and laws that have been well-known to Medicare officials and members of Congress for years, none of that covered my elderly mother when she needed care.”
“I’m so sorry.” I am SO tired of saying it but what else can I say? What do any of us do when there’s no good answer? When your very best effort can’t change a dysfunctional system? Because even though you know it’s not your fault, you can still feel like a failure. The numbing effect that the constant drone of debate about health care almost daily on the news just increases the shock when you realize that the system is REALLY broken and that you and your loved ones are caught right in the middle.
There’s nothing more frustrating and upsetting than the feeling, we’ve all experienced, that your best effort isn’t good enough. When this happens to you, here are three things that you may want to try and keep in mind.
The Personal is Universal
First of all, it’s not you, it’s them. So often in caregiving our loved one’s struggle feels so personal and our inability to improve their situation feels like our failure. But actually, the real problem is that our world isn’t yet ready to support the growing number of people who live into very old age needing a lot of care. We are just missing so many pieces we need: a healthcare system organized to keep people healthy and safe at home, insurance to pay for long-term care, and trustworthy, easy-to-find sources of information to support decision-making.
Families all over the U.S., and the world are struggling to handle everything while we all wait for communities and governments to catch up. Just know that this is the context for your experience. Your frustration is normal. You are not alone in it.
You Aren’t Responsible for Things You Can’t Control
The “observation stay” hospital rules are just among many things you can’t control as a caregiver. For example, your loved one’s illness, your employer’s flexibility, how much money is available to pay for care, whether your sister is mad at you. It’s so important to be careful not to take responsibility for the many things over which you have no control.
What always helps me is that great standby, the Serenity Prayer. Even if you’re not religious, I think you’ll find it as a recipe for sanity. Let me paraphrase. Pick your battles. There are things in your world you can change. Focus on them. There are also things in your world that you have absolutely no control over. Let them go. And when you’re not sure what category a particular problem falls into, turn to those you trust, to your God, your friends, anyone who has your best interests at heart. This practice can help you sleep at night.
You Can Handle This
Also consider, at this VERY moment in your life you’re standing at the other end of a story you told yourself … about how you couldn’t handle something.
So, obviously you handled it. And, you always will.
Because this myth rings so true in the background of my mind every day, I work very hard to tell my own daughter, particularly when she’s stressed, “You don’t have to worry because you always handle everything so well.” And, when she gets to the other side of whatever it is that is worrying her, I try to point out the following:
It always works out okay and you always make it to the other side. The trick is whether we can use this knowledge more proactively – to lessen the suffering of our journey there.
Don’t believe the nonsense that “living your best life” is something you’re not doing right now. If you’re doing your best, and you’re living, then by definition, there’s nothing else to do. Believe it.