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.
Thank you for this informative and sensitive article. You are so right that we are ill prepared as a society to care for those who live into old age and are frail and needy. And those people who are prepared to assist are few and far between. Thank you for the encouragement!
There is something that every caregiver for a Medicare recipient CAN and must do within hours of a hospitalization (or better yet, in the emergency department when an admit is being discussed). You must question the physician regarding the classification of the admission (inpatient versus observation). If it is classified as observation only, discuss with the doctor (1) the plan of care; (2) estimated length of stay; and (3) you concerns for their financial well-being. Obtain confirmation from the admission office that the hospital stay is in fact “admission “ as opposed to “observation”. Be persistent!
Hi Ann,
Iam new to the Medicare system myself as well as using it for my mother. I am however retired from the medical field so I do have some background knowledge. That said is it not possible to check and request a change in admission status at the beginning of the stay?
Some great points here. It is outrageous that elder care requires an advocate, and that advocate has to fight a rigged system to get benefits the elder has worked and paid for, and that those benefits don’t just cover whatever the patients need. Even if you pay the big bucks, you still have to fight to get the care you are paying for, because care facilities are shamefully short staffed. Because they don’t pay workers a living wage. Because the facilities are focused on profit and revenue generation. Because we allow them to do that. So the trick is to figure out which of these things we can change and how to do it.
The system IS rigged and it is failing all of us.
As I learned as their advocate, my parents’ community hospital (suburban Philadelphia, legacy facility, wealthy, laissez-faire in caring for those over 70) played fast and loose with the observation/inpatient game for two reasons one for profit, one for accountability. Observation status means this hospital billed services on outpatient rates, higher than inpatient. And Medicare requires that someone admitted as inpatient is actually treated for the problem that brought them to the hospital, rather than being pumped and dumped (vitals brought back within range and then discharged). As I learned from filing a grievance with Medicare’s ombuds, if the person previously inpatient returns to the hospital within a certain period for the same problem, Medicare requires s/he be treated without Medicare reimbursement. That obligation doesn’t exist on observation status. And this particular hospital didn’t even follow the federal two-overnight rule; instead, it referred to it as “a federal suggestion” (!) and required those incoming sign documents agreeing as such. The one trick I learned to have a parent switched from observation to inpatient – which worked 50% of the time – was going to each of the attending and consulting doctors one-on-one and asking, point-blank: “Are you willing to sign a document stating that you believe xxxx is sufficiently treated to be discharged?” No doctor wants a potential lawsuit and, from time to time, one will blink. I recommend going beyond the hospitalist – little more than traffic cops – and dealing with as many specialists as possible.
This article is spot on & the comments are very helpful too. I appreciate Andi’s detailed information & recommendations. It made me think of how I can assist my friends who are slowly becoming caregivers. The chaos of juggling the kids, our jobs, managing our houses, & many responsibilities we have it’s extremely stressful and emotionally exhausting. And after those many trips to the hospital oh, your parents are saying one thing but their bodies are saying something different. The parent you thought was being responsible for their doctor’s appointments, test results, & doctor’s recommendations, was scared & had ignored everything, so they could still go dancing & do the things they wanted. It’s important to let them bounce back, so you can find out what they’re thinking and how they want to handle these medical issues. Otherwise you could spend hours fighting a system to save the government millions of dollars. My father was a very strong man and it was obvious his journey was ending soon, yet 20 minutes before he passed he asked me to bring him Hershey syrup and some soda, so he could make a chocolate soda when I returned the following day. My gut was telling me to stay, but I knew my younger brother would be there in 5 minutes, and I thought it was important that he have the same alone time that my brother and I had already had. Unfortunately for my brother, he was still in denial that our father was dying, and he was so upset that the blood pressure and heart rate were so low & the alarms weren’t going off and the nurses weren’t coming in. My father savored his last beautiful sunset and time with his three children, & peacefully passed away. Fighting insurance and Medicare is exhausting and I urge everyone that is going through this chaos, to share their experiences so that we can help others.
It didn’t take me long to realize that ADVOCACY was, and is now with my dad, my primary role.
It helps that they are legally prepared with having made many of the end-of-life decisions, and with long-term insurance and immediate decisions about living in a care facility.
But my experience in healthcare is what taught me the importance of the advocacy role for a family member. I knew very quickly that I was the one that was going to have to place myself in the middle of the care plans and the medical staff and my family and much more. My mom declined through many stages for a little over a year before her death.
Another oddly lucky thing for us and me was that I was put on Disability around the same time that she began to decline, so I was available to her and to my dad in a way that I could not have anticipated. Another thing my husband and I did was we moved them closer. They had lived about two hours away and we moved them 10 minutes away less than a year ago because I knew that she was declining in major ways.
I was also made her primary POA about six months ago, which I learned was absolutely necessary for me to be able to function within her care system.
My mom died a little over a month ago. While I do feel that I did just about everything right, it was very time-consuming and exhausting.
I know exactly how you are feeling, but continue to remind yourself that you did the best you can. Make a conscious effort to reach out to others who are going through this and if you have the energy, help people that have no family by becoming an advocate. Most states have trainings available and some nonprofits will give you some small compensation. Focus on healing yourself from this emotionally exhaustive experience. Hopefully you can go back to work or find another job that you are able to do.
I wouldn’t say that the system is rigged, implying someone is benefiting by this procedure. Check out the history of how Medicare came to be. Once I understood that, I was better able to understand how we came to this point.
This is a purely medical system and many illnesses do not fit that model’s terms and expectations. The demands of dementia, especially, for the patient and caregivers is not adequately addressed in the medical model. People need to question the medical model and push for changes in the Medicare system as a whole.