Other than death of a loved one, few things are more disorienting than making the shift from being cared for by your parents to caring for them.
This transition is made even more challenging because it usually comes as such a surprise. And it’s not just the biologically wired blind spot we have against our parents’ vulnerability. It’s the utter shock that, when it happens, there’s no place to turn for help. It’s like trying to climb a rock face without any toeholds or crevices where you can grab on, and then scaling it without a net.
The problem with our aging system is that even though there’s a lot of information out there to help, the situations most caregivers confront are so incredibly complex, unique and specific (e.g., Why won’t rehab providers accept my Dad?) that they can’t find exactly what they need. Or they want the one exact right answer to a very complex question that doesn’t have right answers.
My friend Quentin Fottrell is the Moneyologist columnist over at MarketWatch. He recently shared with his facebook group a reader question about whether a woman should help her 75-year-old sister with medical-related credit card debt.
Two commenters asked, “Why does she have medical costs? Isn’t she on Medicare?” They thought that Medicare covered most healthcare costs for older adults.
Unfortunately, this simply isn’t true. While Medicare is the primary health insurer for most older adults, it only pays a part of the healthcare bill. There are three kinds of out-of-pocket costs that we face!
I don’t know anyone who feels like they can just up and quit taking care of a loved one who needs it. The very nature of this role is that it’s not something you choose.
That doesn’t mean that we don’t often, or even always, wish we could get off the caregiving train. The work’s not fun. It’s unrelenting, hard and requires tremendous sacrifice.
Often in life, quitting can be a healthy thing to do… ending a toxic relationship, leaving a miserable job, or even moving on from a comfortable career so that you can do something more rewarding.
But, there are also times when we, either can’t or don’t really want to stop. We just need to find some way for the pressure, fear, and exhaustion to ease up a little.
If this is your situation, here are 6 questions you need to ask yourself.
Earlier this year, I wrote a blog about how important it is to prepare for end-of-life decisions you might have to make on behalf of your parents. I wrote about advance directives, and having important conversations with doctors and family.
I culled so much good advice from books and articles that it inspired me to talk to my own family.
Here’s how that went down.
Me to Dad: So, Dad, I’m writing a blog about preparing for end-of-life decisions and it occurred to me that we haven’t really talked about what you and mom want.
Dad: You think we’re DYING!?
(End of conversation)
Me to Sister: So, I’ve figured this all out. I’ll tell Mom and Dad that you should be the financial power of attorney because you’re good with money and I’ll be the healthcare power of attorney because I’m good with healthcare
Sister: * ? *
Me: Oh, see, I was thinking we should get Mom and Dad to focus on creating their advance directives — you know, end-of-life planning
Sister: Is there a book I can read about this?
Me: You know I’m an expert, right? Don’t you trust me?
(End of conversation)
“What do you mean Medicare doesn’t cover this?” My friend Sarah was caught off guard when I told her that her parent’s health insurance program doesn’t cover her parents’ care.
What I explained is that there’s a lot Medicare doesn’t cover and one of the biggest gaps is the ongoing, long-term care that people need when they become frail or disabled.
This care is expensive! Hiring someone to help with cooking, laundry, transportation or personal hygiene can cost around $20 per hour!
So what do families do? Well, one of two things. They pay for this care out of their savings… or much of the time, DAUGHTERS PROVIDE THE CARE THEMSELVES.
In fact, new research shows that most of the really frail older adults in this country don’t live in a nursing home. Most live at home and the vast majority — 2/3rds to 3/4s — are being cared for ONLY by family members — unpaid.
It’s 5 am on a Saturday morning and I’m lying awake with that cold, sweaty, anxious feeling that comes from deep existential angst masquerading as too many things to do. I know something has to change – that there’s GOT to be another way to look at my life..to live so that panic isn’t my default emotional channel.
One of the good things about being almost 50 is that I can look back on the last 20 years and realize that being anxious all the time doesn’t change much, regardless of what I’ve got on my plate. In other words, my responsibilities have always felt like too much, even when I was taking math tests in 5th grade.
Americans have a love affair with hospitals.
We tend to think of doctors and nurses as the people who were working hard to make good grades while the rest of us were skipping class. I am pretty sure my brilliant, doctor friend Heather was walking around with a stethoscope at age four while I was still sticking Play-Doh up my nose.
This romantic affection for hospitals is not entirely misplaced. There are zillions of people who need life-saving surgery and who live longer because a hospital was able to treat them effectively. ERs in public hospitals handle an onslaught of some of society’s toughest cases; drug addiction, mental illness, and homelessness.
But, you don’t want to start your caregiver journey in a hospital.
Everyone says that they want to stay at home as they age. And, actually most of the frail older adults living in this country today are, in fact, living in a home setting. Really very few live in nursing homes or assisted living facilities.
Now you might think that this is pretty great — our parents want to be at home and we want them at home. The problem, though, is that the vast majority of frail older adults living at home are 100% being cared for by their family and friends. And if you’re the one doing this work, you know that caring for a frail older adult without help is very, very hard.
One way to make it a little easier is to hire someone to help. But, many daughters can’t go this route because one, it’s expensive and two, it’s not covered by insurance. Medicare does not cover the expense of a home care aide — even for very sick people. The program does have a “home health” benefit but it’s extremely limited and pretty much only covers therapy…not ongoing help with basic needs.