Death and taxes are the only two constants, according to an adage coined by a man who never had to put a relative in a nursing home. But to those who have witnessed a family member get sick and die, death is its own tax. It’s an emotional tax, a professional tax, a fiscal tax. It’s something young Americans, loathe to honestly engage with the idea of decline and death, are ill-prepared for. It’s something that those who must face it often face in isolation, something that will only get more taxing and isolating unless something gives.
Kevin Brody’s father began having seizures about 10 years ago, when Kevin was just a teenager. Treatment for the Alzheimer’s that eventually claimed his father’s life was draining for his family. Every cent of the $50,000 annuity his father had set up went to medical care, to day care facilities, to a nursing home. Medicare didn’t approve the cost of treatment until after Kevin’s father had died.
Amina*, a 29-year-old California woman, counts herself lucky. She and her 26-year-old sister moved back into their childhood home when their parents’ care needs exceeded their ability to take care of themselves. Amina’s mother is on a cocktail of medications to address a problem with her heart and must get blood transfusions every two years to deal with her anemia. Amina’s 70-year-old father has osteoporosis and needs help getting in and out of the shower. All of Amina and her sister’s paychecks go to supporting their parents.
“I’m absolutely terrified of Trumpcare or whatever it is they’re calling it,” she tells The Daily Beast. “The one statistic that keeps getting trotted out, the 64-year-old making $26,500 paying $14,600, is absolutely insane. We simply won’t be able to afford to pay an increase like that.”
Trumpcare, or an Obamacare repeal by any other name, made its rocky public debut last week. The proposed legislation, which its framers are calling the American Health Care Act, made several unpopular suggestions—defunding Planned Parenthood, creating an insurance market that could require women to buy both abortion insurance and maternity insurance in addition to their regular human body insurance, and savaging Medicaid, among other things. But Paul Ryan, Donald Trump, and other Republicans hoping to follow through on a seven-year-old promise to repeal Obamacare had their pride to tend to. To be fair, it was their idea. To be honest, it was inferior to the imperfect law already on the books.
This week’s release of the Congressional Budget Office analysis of the plan drove a stake into the AHCA’s heart, at least in the eyes of the public. A staggering 24 million would lose insurance. Millions shut out of Medicaid. It’s no wonder that by Wednesday, House Speaker Paul Ryan had walked back his endorsement of the legislation, proclaiming that something needed to change in order for the law to wheeze through the lower house.
As fiscal conservatives in Washington lick their chops over the possibility of slashing health care entitlements, it’s not just the elderly who should be nervous: it’s also the younger generations that will be advocating for, caring for, and helping shoulder the cost of elder care. Baby boomers know this all too well. Millennials like Amina and Kevin know this all too well. But a far greater number of people in their generation—those born roughly between 1980 and 1992—have no idea what’s coming, or how much worse it could be if Trumpcare is actually enacted.
Howard Bedlin is the vice president of public policy at the National Council on Aging. He finds the proposed replacement for the Affordable Care Act worrisome, especially in light of the Congressional Budget Office’s analysis of the legislation’s impact. The proposed rollback of Medicaid would not only sundown the program’s expansion, but cap how much states were allowed to spend on the program. That means that eventually the cost would balloon well beyond states’ ability to pay, and, Bedlin predicts, quality of care would plummet.
This couldn’t have happened at a worse time. “If you look at the CBO report, in 2026, Medicaid will have been cut by about a quarter,” he tells The Daily Beast. “A 25 percent cut in Medicaid. That also just happens the year that baby boomers are going to start turning 80.”
As their parents reached their twilight years, baby boomers often found themselves financing care for both their parents and children at the same time. Millennials stand poised to experience the same squeeze to a more dramatic degree. Low birth rates, longer lifespans, and fewer high-quality jobs means some millennials could wind up caring for parents, children, and grandparents all at once. Some already are.
A few months ago, Jack, 29, of New York City moved to a bigger apartment so that his ailing father could move in with him. Without good insurance, he estimates that costs of care for his dad could have been upward of $1 million. Maura*, 33, of New Jersey, lost her father to cancer last year. During his illness, she, her sister, and her mother rotated taking care of him, driving him to appointments, caring for each other. Without insurance to cover the cost of his care, his chemo would have cost $12,000 every two weeks. Without the flexibility to occasionally work from home or take time off from work, Maura says she may have quit her job.
Then there’s the mental health aspect of caring for a sick or dying relative. Even after her father passed, Maura’s family suffered. “No one really talks about end of life and how draining it is and grief feels like you're clinging to a piece of driftwood in the ocean and no one can even see or hear you,” she says. “People just expect you to get back to normal afterwards, like not bother them too much with your pain.”
Trumpcare also proposes a rollback on mental health care coverage.
Mark Kastner, 25, currently of Seattle, watched his mother, a veteran-cum-commercial fisherman, struggle with health problems for years. After she succumbed to a heart attack last year, Mark made a startling discovery. “I was basically under the impression that all of the care was free, but man, I was wrong! She also did a pretty good job of keeping that stuff hidden from me, but I soon found out what everything would cost. A friend of mine put me in contact with a lawyer that was willing to help me settle all of the bills as to not have collections agencies coming after me and my credit. We ended up settling for about half of the total amount, and I paid out about $150,000 in medical bills.” He sold his mother’s fishing boat to pay her medical expenses.
Spencer Birkenstock of Brooklyn by way of Wisconsin watched his ailing father bounce up and down the lung transplant list years back. The stress of dealing with the emotional demands of his illness rended his family. His father, who was able to get a new lung and pull through, needs to take dozens of pills per day, in the words of Spencer, “so that his body does not puke up someone else’s lung.”
Medicare and Medicaid as-is often leave caretakers in difficult financial situations. Annie*, a 36-year-old New Englander, has found herself juggling care for her daughter, her mentally ill mother, and her ailing uncle all at once. The latter two are on Medicare and barely eking by in a state thousands of miles away. If Trumpcare or similar cuts to current ACA coverage are enacted, Annie isn’t sure what she’d do. “If you had asked me 20 years ago about any of this, I would’ve just stared and maybe laughed,” she says. “First of all, I would assume they would have decent medical care as older people. But to be sweating that they may be worse off than they are NOW is terrifying. My uncle could DIE. My Ma without her antipsychotics is a ticket for her to get harmed or arrested and she would be thrown in jail due to her already numerous arrests. I also would’ve never thought I would be caring for family members who were so unwell.”
Long-term care is quickly slipping beyond most Americans’ reach. For starters, most standard employer plans don’t cover it. Medicare doesn’t cover it. And what Medicaid covers is often a level of care people aren’t comfortable with foisting on their loved ones.
Additionally, thanks to what’s known as “lookback periods,” Medicaid applicants must prove that they’ve been poor for long enough before they qualify for benefits. In 49 of the 50 states (excluding California, which has a shorter lookback), people applying for the program must divulge their last five years of financial transactions, so that officials can assess whether the applicant sold assets for below “fair market value” during that time. On a practical level, this means that people who anticipate that they may soon be applying for Medicaid to assist with covering the cost of a nursing home (again, $90,000 per year) cannot hastily transfer ownership of their assets to their children or loved ones to avoid having the value of those things go to paying for health care. Brass tacks: If your dad owns a house now, and falls and breaks his hip tomorrow, and needs to go to a nursing home next year, he can’t transfer the home to you in the dead of night for anything less than “fair market value.” If he does, the nursing home is going to come calling for the value of that home before a cent of government aid hits.
Amy Stephenson, 32, a writer in San Francisco, has also watched her father’s luck and health decline. He was a lifelong tradesman until the work dried up. Now he hops between part-time gigs as his health allows. “Literally just this morning as I was starting my day, I had a flash of panic sitting at my computer that someday, probably maybe soon, this man who is 60, perpetually overworked and underfed, and beginning to deteriorate visibly, is going to have a major cardiac episode. And I have no idea what I will do about that. I have my own $80,000 in student debt, I already work three jobs, and while I consider myself a happy and successful person who would be absolutely thrilled with her accomplishments and standard of living otherwise, I am never not worried about what will happen to my father.” She and her husband plan on moving back to New York to care for him and hopefully stave off the need for long-term care.
Brett, 35, of Nebraska, is concerned of the costs for health care for his parents. His father has long struggled with mental illness, and insurance costs are already hefty for his mother, a longtime schoolteacher. “Pre-November 9, I was telling my mom that we could check out the ACA exchanges to see if there were even better policies at lower prices,” he says. “That is no longer a reality.”
“My stepfather and mother were both Trump voters,” says Jason, 34, of Southern California. “They are retiring this year and relocating from California to Oregon. My mom donated a kidney to my uncle last year and undergoes routine exams for checkups on her health and any potential complications. During the last visit, they found, and she was diagnosed with, thyroid cancer. It was caught very early, and she just had surgery to remove her thyroid last week. She will need thyroid medication the rest of her life. I went to see them over the weekend and asked questions like, ‘Now that you’ve seen Trumpcare, what does that mean for your retirement?’ and neither one of them have a solid answer, obviously. They are both scared for the future, mostly because they are in the dark and had a plan in place for the next five to seven years that could all be thrown out the window with this one decision.”
As the Affordable Care Act’s future hangs in the balance, so too does the future of a generation moving into old age and the generation that will care for them as they do. Will American health care address reality? Or give self-anointed budget wonks a thrill? Will politicians eager to make things more difficult be ready to face the anger of millions whose barely-together lives come apart at the seams?
“No one wants to say to their parents, ‘I’m sorry that you aren’t mobile but I can’t afford to get you the right walker that you need,’” says Alexis, 32, of Boston. “No one wants to say, ‘I’m sorry that you need dialysis but it’s not covered.’ No one wants to say, ‘I’m sorry that you are in pain but I can’t afford a physical therapist so take this painkiller that makes you woozy and forgetful.’ Right now I desperately want to buy my dad a new hearing aid. Who knew that those were SO expensive?”
Alexis, and many like her, are angry. “I mean, [Trump] summed it up well by saying, ‘Who knew health care was so complicated?’
“Everyone knew. Anyone who has ever had to find a PCP, get a referral, and pay a medical bill knew.”
* Names have been changed to protect interviewees’ privacy.