When you provide care and support to others, there are many rewards and stresses for all of the choices we make. Caregivers have a bad tendency to disregard their own needs and prioritize the needs of others.
Victoria Huff chats with Tracey Lawrence about the ways adult children of aging loved ones can cope better with the demands in their lives and find ways to lead happier lives.
A dear friend of mine was hospitalized a few years ago with some concerning symptoms. She came out of the situation and returned home only to receive an unpleasant surprise. The hospital sent her a bill for $117,000.
My friend, Adria Gross, helps people with these kinds of situations. In this “Good Kids Club” podcast, “Don’t Pay That Bill,” Adria shares her process and the happy outcome.
This topic came up on my private Facebook group, “The Good Kids Club” and I thought it might have some value for others in this situation.
So many of us face caring for parents as we age. At a time when we feel more able to slow down and put ourselves first, the specter of family caregiving often shows up as an unrequested “gift.” We love our parents (we may not LIKE them, but we LOVE them) and want to do the right thing. This past year drove many independent seniors to seek support from adult children because they were fearful of doing the simple things that never bothered them before. So many found themselves more involved in their parents lives sooner than anticipated (if they even saw it coming at all).
Once we begin to step up, we are too often unprepared for the challenges that arise. One club member posted a story about her mom, who is in her 90s, having a condition causing pain in her mouth. It was not a dental issue, but because of how the condition was charted, Medicare viewed the problem as “dental” and denied the charges. This was an expensive error. The author of the post suspected this would happen, and the upshot was that her intuition was correct, her mom got seriously overcharged for treatment that should have been covered, and the dutiful daughter now has to contest the denial.
Now, this can happen to anyone. Standard operating procedure for most health insurers is to deny first, fend off queries later. They are BUSINESSES. The health of the insured is not their primary concern. Collecting premiums and denying claims have much higher priorities. So it falls on us to watch what they do, ask a lot of questions and make sure they do what they’re paid to do: pay for as much of our healthcare as they promise to.
When we get involved with our parents’ care, we need certain tools:
Number 1: HEALTH CARE PROXY. We need to be officially and legally appointed by our parents to represent them. Without that document, insurers can dodge you. So don’t make it easy for them. Make sure you are appointed and have a valid document that proves it.
Number 2: TEAM UP WITH DOCTORS. In order to make sure your folks are getting their procedures and treatments covered, they need to be seeing doctors who know how to navigate. Get to know the doctors who care for your parents. Talk to them. Ask questions. And if they aren’t going to doctors, seek out appropriate physicians and get your parents to go. Go with them if you can.
Number 3: CHECK THEIR INSURANCE. I highly recommend talking to a Medicare broker to go over the products your parents are using. The types of programs available change annually and vary from state to state. Brokers don’t charge for their advice, and they are product agnostic. Getting their opinion on your parents’ coverage can save a bundle and doesn’t cost anything but your time.
One last thing: while you’re considering these concepts regarding your folks, consider your own situation as well. Time moves merrily along, and in the blink of an eye, we’re in the position our parents were in. Let’s learn from it, protect ourselves and those who love us and sleep better knowing we’ll get the care and support we all need, without spending everything we’ve worked all of our lives to acquire.
As parents age, they often become more reliant on their adult children for support. Especially now, when so many are frightened by the prospect of getting sick from a virus that picks on the elderly.
I talk to A LOT of those adult children. Many don’t realize that they are performing a role called “caregiving.” They think of themselves as “Good Kids” helping out their folks because it’s the right thing to do.
And that is a good and noble thing. We should help our parents when we can. Unfortunately, the things they need us to do for them usually escalate over time, and it sneaks up on us. Before we realize it, we go from helping out with occasional errands to engaging in a full-time, unpaid gig that eats our lives.
I started the The Good Kids Club, a private group on Facebook (and a corresponding group on LinkedIn called “Good Kids” with Careers) to educate and inspire people in this growing segment of the population. People are aging at an alarming rate, and their kids are under pressures they never foresaw.
These groups are growing and I hope you’ll join us. We need your voice and perspective. When you ask a question you might think of as “stupid,” a bunch of other people see it and think “Oh yeah! Me too! What can be done about this?”
So I invite you to join our club(s) and let’s help each other. Be a Good Kid and sign up today!
Some people are shy. I used to be, but found no satisfaction in it. So I’ve been sharing my story lately and now that “Dementia Sucks” has attained bestseller status, folks are listening!
Here’s a wonderful interview with Markos Papadatos of Digital Journal talking about my caregiving journey, how to led to writing the book and creating a brand new course for people about to become caregivers to aging love ones. Check it out!
You were doing fine. Your folks seemed fine. Everything was moving right along, and then COVID happened. Suddenly, the kids are home all the time. You’re trying to work from home. And your parents, who’ve been so independent and on top of it all, are showing their vulnerability.
It’s more than a little disconcerting. You haven’t really given this a whole lot of thought but, dang, they aren’t going to be around forever and maybe, just maybe, there are things about Mom and Dad that you really should know but haven’t even considered asking.
Now is your golden moment. You have an opportunity to ask them all those questions you’ve been avoiding, but what should those questions even be? HOW do you even approach the conversation? And what do you do with that knowledge once you have it?
Here’s where you should go, right now: the Family Care Survival Course. This online 2 hour on-demand video curriculum will walk you through the tough stuff and give you a grounding in how to do this complicated stuff with greater success and more satisfying outcomes.
Designed by Tracey S. Lawrence, author of the ground-breaking book “Dementia Sucks” specifically for the adult children of aging loved ones, this course is packed with great, actionable information. Delivered in Tracey’s down-to-earth, approachable style, you’ll come away with a strategy to get your family moving in the right direction!
A big part of my life is devoted to educating people. My mantra for 2016 was about the need for everyone to appoint an advocate. When you get sick, you can’t fend for yourself. HIPAA laws require that you put your choice in writing so your advocate will be able to do their job should the need arise. My husband and I have done this, and we are clearly in the minority.
On New Year’s Day 2017, my husband, Bob, had a health emergency. Miraculously, I was able to find an internist who was willing to come to our home and see him on that holiday Sunday. Upon examining him, this doctor sent us to a hospital that, while less than convenient geographically, admitted him with relative speed and got him connected to all the specialists, tests and treatment he would need to recover.
Bob remained in the hospital until January 11. He had four roommates during his stay. Three of them were single males with no advocates. Their fates were all frightening and sobering.
The first roommate was in great distress when I came for my first visit to Bob’s semi-private room. He had not been fed in 27 hours. There were no doctor’s orders for meals and no one to follow up for him; just the nurses and staff, who were overwhelmed caring for lots of other patients. He was alone and apparently had no primary care physician. This guy was pulling out his IVs as he howled in anguish. A nurse helped him removed his tethers to prevent him from hurting himself and the fellow immediately checked himself out with his condition untreated.
Roommate 2 came in with COPD and pneumonia. Single and apparently lacking a primary doctor, he had stumbled into the ER in crisis and was admitted. Over 24 hours later, no meals (but he stayed long enough to finally enjoy the “cuisine”). No advocacy. He did receive some treatment but needed to go home. His pets had been unattended for the two days he’d been receiving care. With outdoor temperatures in the 20s, he lived two miles from the hospital and had no money for a cab ride home.
Roommate 3 was a young man with several doting female family members (his mom, grandma and an aunt). There was not a lot of room for all of us, and there were a lot of strained smiles and “excuse me”s getting in, out and around in the room. But that fellow apparently received adequate care and was released within two days with his mom to help him.
The saddest case was an elderly gentleman who was in my husband’s room for just a few hours. He had been a heroic policeman who had disarmed killers and saved lives. Having lost use of all of his limbs over time, his family abandoned him. He brought Bob first to anger with his protestations and then to tears after hearing his story.
As I managed Bob’s care from the outside, I was impressed with the internist who got us there. He was communicative, respectful and responsive. He coordinated with other specialists he respects. He got things done and kept his eye on the big picture. This is someone I want on my team.
This challenging return to caregiving has made me refocus on an important priority: starting with the right doctor. Most of us begin with our insurance and go from there. Searching the “provider locator,” we try to find a network doctor who will serve us along with suitable “in-network” facilities as we need them.
Unfortunately, playing the game from the insurance company’s perspective, we are at the mercy of actuaries rather than medical professionals. The decisions being made are based on finance, not health. And that’s a dangerous approach. The needs of the patient, the human being in question, should always come first. But that’s not how the current system is built. That’s why it’s broken. The cards are stacked against us and we often don’t realize how badly until we’re in the middle of a crisis.
So here’s what I recommend: find a good doctor. Not just someone who tells you what you want to hear. We all need someone who is more than simply qualified, but who listens and is willing to work as part of our team; someone who knows how to navigate. Otherwise, we can find ourselves stuck in the cracks of this broken system.
And please appoint an advocate: select someone you know and trust, who will stand up for you and follow up with the professionals, because we’re all human. We all miss stuff. And you need to put it in writing, or they’ll never get anywhere.
It doesn’t matter what hospital you’re in so much as who’s writing the orders and who’s coming to visit. That’s all part of a much bigger prescription that requires a team to implement.
While these suggestions may seem overwhelming, acting on them while you’re healthy is the smartest thing you can do to protect yourself. Doing it by yourself from a hospital bed is damned near impossible.
When I first began caregiving my demented mother in 2010, I was in no position to work outside my home. I had been a self-employed graphic artist for many years. My husband had a full-time job with good benefits, affording me the ability to work from my home-based office, take care of the house, my pets, and my mother, managing her care while performing duties that kept my clients happy.
In 2012, my husband lost his job, and we had to pay COBRA (paying both the employee and employer’s share) for our health insurance while we figured things out.
I had become rather adept at navigating long term care insurance, medical insurance and other bureaucratic systems on my mother’s behalf. And I had, at that point, placed Mom in a memory care facility. But I was not well-versed in financial instruments and was disappointed in the alternatives I had been offered in pursuit of ways to preserve my mother’s resources for her care. I investigated ways I could become better educated and possibly earn a salary with benefits.
The financial services company I employed for my household needs offered a program for business owners looking to make a change. I applied and they recruited me. They paid for my education and enabled me to attain securities and life insurance licenses. I studied hard and passed all the exams on the first shot. I was appointed and was expected to bring in new accounts right away.
During my first year, I was paid a salary with benefits, including health insurance for my husband and me. That was a big relief. And I was encouraged to go “out in the field,” to acquire new business. My appointments granted me some flexibility to see and care for my mother. But there were also a lot of demands on me to be in the office for meetings, paperwork and training sessions.
The trajectory of my mother’s illness often called upon me to drop everything and go wherever she landed, because she couldn’t speak for herself. My employers knew my situation, and in fact, found it a compelling reason to hire me. My story was a powerful “why” in talking to potential clients about planning, particularly for long term care.
The summer of 2014, my mother was hospitalized twice. In July, she had sepsis (a blood infection), which required her to be restrained and medicated. I really thought she was going to die then, but she recovered. After a challenging period of dealing with a bad rehab facility and getting her transferred back to her home with physical therapy provided there, she did better. But I was having to take a lot of time off to coordinate.
With her condition improving, I dared to consider spending more time focused on my profession. Then, in August, I got the call that Mom was bleeding profusely and was on her way back to the hospital.
My mother had a rare, undiagnosed disorder that produced too many red blood cells. Her body responded by rupturing her intestines to compensate. It was time for hospice.
And that was about the time I found myself weeping in the bathroom at my office. My employers were pressuring me, writing me up for poor job performance. My mother was dying and needed me to be with her. I didn’t know which way to turn.
Emerging from the sanctity of the ladies’ room with red-rimmed puffy eyes, I ran into my manager in the hallway, and he asked me what was wrong. I could barely get the words out.
He said there was a way to get me the relief I sought. He gave me the phone number of a benefits administration team, and they connected me to resources that enabled me to apply for family leave. I could take up to twelve weeks off without jeopardizing my position. And because I live in the state of New Jersey, I could also apply for benefits that would pay some compensation. I would have to fill out forms (corporate, federal and state) and get signed statements from two of my mother’s doctors certifying her need. The important thing was I COULD take time off to do what I needed to do for my mother and myself.
I ultimately left that job, but at least I had time to make an informed decision beforehand. I was able to weigh the pros and cons. And I left on good terms.
Since then, my life has changed a great deal, but the memory of that day in that restroom stays with me. I know that there are thousands of people, working outside the home and caregiving someone inside their home, faced with a lot of the same angst I faced. I want to shine a light on this issue, both for the employees who are suffering and the employers who rely upon them.
Their careers are threatened: many caregivers lose their jobs because they never disclosed their situation to their employer and their performance was suffering. Many others leave without notice during a crisis
Their futures are threatened: if they aren’t careful, they can easily spend everything their loved one had on care, and wind up dipping into their own resources, impoverishing themselves
Their marriages are threatened
Their children suffer, too
So, what can be done?
First thing, caregivers need to recognize that they are, in fact, caregivers. It may sound silly, but a lot of people in that situation think of themselves as just being “good kids.” It usually starts slowly, with “favors,” but can grow quickly when there’s a health crisis. So know this: if you are providing support to another adult, you ARE a caregiver.
Second, employers need to align with employee’s needs and develop a policy that
Encourages employees to speak about their situations at home
Provides support and resources to employees in caregiving situations
Trains management to recognize and respond to the problem
Enables applications for family leave
Offers cross-training and the creation of teams so staff-members can fill in for each other
Allows for remote work if at all possible so caregiving employees can spend more time at home
Sponsor workshops and seminars for employees to obtain the knowledge they need to become legally-appointed and capable advocates for their loved ones
If you’re an employer who is curious about enacting the kinds of policies discussed here, there are resources available. And if you’re an employee (or an employer) who has aging loved ones, I encourage you to seek help with your questions. Please don’t wait for a crisis, or you might find yourself crying in the bathroom.
This blog was originally posted on the “Light Of Gray” in 2014.
These days, I am reading the powerful Stephen Covey classic “The Seven Habits Of Highly Effective People.” The principles outlined make so much sense to me, I feel as if everyone else probably knows them already. But in reality, few embrace proaction and effective living. This knowledge comes, in part, from my membership in the caregiver community.
Family caregivers are some of the nicest, most sincere, hard-working and generous souls on the planet. They are also some of the least healthy, most angry and stressed out people who draw breath. I am often frustrated by the things they say and do, because they are quite clearly destroying themselves. Too many of them die young. Many more injure themselves permanently and wind up needing care (too often without the necessary resources or plans in place to enable their own adequate care).
To drive the point home, I offer the Seven Habits of Doomed Caregivers:
1) Always do exactly what your loved one asks as soon as they ask no matter how unreasonable it might seem. After all, they are your (fill in the blank: mother, father, grandparent, etc.) and they always knew best (at least once upon a time).
2) Do everything yourself. No one else cares enough and nobody can do it all as well as you can, right?
3) Never take a day off. You’re strong. You can handle it. Your loved one can’t go on like this forever, can they? Maybe it just seems like forever.
4) Never ask for help. People will only let you down. If you ask and they say “no,” it will only make things more awkward. If they say “yes,” they won’t do what they promise. Or they’ll make you sorry you asked.
5) Don’t see your doctors. It’s hard enough getting your loved one to their doctors, so you don’t have to go for your own visits. Who has the time? You’ll be fine. Until you aren’t.
6) Don’t vent. People will think you’re crazy. Or weak. Or exaggerating. So hold it in. Until you can’t and explode.
7) Give up doing everything you enjoy in order to spend the maximum amount of time with your loved one and to save as much money as you can. Life is short but seems much longer when you don’t have any fun, ever.
I see people making these terrible decisions all the time. And there’s no pay off, no good reason for it. They usually have options; they just choose the wrong ones out of some misguided idea that the old rules somehow still apply. THEY DON’T.
Once a loved-one becomes ill and you are in charge, TAKE CHARGE. If you are caregiving a parent, once you start paying their bills and taking responsibility for your parent’s life, you must also have AUTHORITY. If mom or dad make unreasonable demands, your life-long programming will compel you to comply. But you must learn to fight the impulse. Because what they think NOW is generally irrelevant. They are failing. They are frightened. They want control. But they are no longer capable. You need to take control. That’s not easy, but it’s essential, for their survival and yours. You are the adult now. You have the experience, strength and perspective to make the best decisions. They no longer do.
And if you need help, ask for help, hire professionals, and educate yourself as to the resources available.
Facing caregiving alone, following the seven habits outlined above, is a recipe for disaster. Please don’t succumb. Life is too short to be squandered on wreckless caregiving. Be more effective and proactive. Develop a team. You have the right to live your own life, on your own terms. It’s a shift you can make happen if you have the will. Use your strength wisely.