"Field trip time if you want to go to a death house," Scott Boggs, 57, says in a late January voicemail. "I'm referring to the Winter Park Towers hospice center where my mom is going be for the next three days. I have to go deliver a folding deck chair so that it can be approved by the nurses."
There's a certain dryness and defeatism to his tone. Boggs' mother, Betty, will be 90 this summer, and, since his brother died of an HIV-related illness in 2011, Boggs has been his mother's main caregiver, taking her to the nursing home on Tuesdays every week for free care and leaving her there a few days every now and then so he can get out of town.
The rest of Betty's history and (lack of actual) diagnosis comes off like a bit of American folklore. There were pyramid schemes, time in the Mormon church, weight-loss fads (something to which he attributes his mother's failing health, along with post-traumatic stress disorder from several life events), "little tumbles," alcohol and, well, gypsy funerals. She's "an eccentric," he says, lovingly. She always has been. Her doctors think she may be suffering from Alzheimer's disease or dementia or sleep apnea, he says. But no one can be sure.
She's also living on scraps in her old age, having lost her husband about 15 years ago. According to Boggs, he and his mother subsist on $15,000 a year from Social Security. He rarely leaves her side.
It's not an uncommon story, especially in Florida. A post-U.S. Census story in the Miami Herald in 2013 illuminated what everyone sees coming, but nobody seems to want to talk about. The Baby Boomer generation is aging, and the number of them over 65 is about to double in the next 30 years to 81 million, according to the Herald. Likewise, seeing as 90 percent of seniors want to advance in age in their own homes, there has been immense growth in demand for home-care agencies or paid leave for people who need to care for aging parents. Orlando is on the list of the top 20 areas with the highest demand for home health care, according to the Bureau of Labor Statistics. And when even more of the 78 million Baby Boomers age into the market – as they have been since 2011 – their kids, and their service providers, may be in for a rude awakening.
Boggs has been spending his spare time talking to politicians like Congressman Dan Webster, R-Winter Garden, state Sen. Geraldine Thompson, D-Orlando, and state Rep. Randolph Bracy, D-Ocoee, trying to bring Betty along with him when he can. He says he'd rank their response a "5.5 out of 10," and that he's "not surprised I'm not getting any thank you cards from them." He's making noise about Medicaid expansion, something the state Legislature has refused two years in a row at the cost of $51 billion from the federal government to cover nearly a million people in the Medicaid gap. He, as a layman and not a politician, thinks that there needs to be some kind of carve-out – whether from Medicare, Medicaid or the Affordable Care Act – that takes these increasingly common situations of homecare and its expense into account, whether by professionals or family members. He notes that on any given Tuesday at the Winter Park Towers, he'll see new Volvos and old Chevys alike. Nobody, he says, really wants to talk about something as private as the end-of-life moments with their parents. Just because people aging at home aren't in nursing homes doesn't mean their care isn't a financial burden, and he thinks there needs to be more of a conversation about the issue to bring change. He's not alone.
"It needs to be part of Medicare. It doesn't make sense that if you happen to live in New York, you're eligible for home care but if you happen to live in Alabama, you're not. There's no fundamental logic to any of that," U.S. Congressman Alan Grayson, D-Kissimmee, says, noting that some states have some funding dedicated to assist people with the cost of home health care. "That's the way it is. Florida is a low-tax, low-service state, but we're also the state with the highest percentage of seniors. In fact, we have an enormous financial benefit from that. We get $300 billion more from the federal government each year for senior care than we give in taxes. We are the No. 1 beneficiary of federal money, and the state that is in second place, Louisiana, has one-fifth as much with $50 billion a year."
Grayson is familiar with this territory. He spent more than two decades on the Alliance for Aging Research, which he claims helped bring a 600 percent increase in federal financial support during his tenure. He also spent two years as director for Florida Senior Programs advocating for senior volunteerism.
"There is a general sense from seniors that they're being cheated because Medicare does have gaps in it, this being one of them, and Social Security never seems to be keeping up with their costs, something we'll be trying to address. If it's true anywhere, it ought to be true in Florida that there's some kind of statewide consensus," he says. "Unfortunately, since we have a radical right-wing government in Florida, and the GOP is a wholly owned subsidiary of the Chamber of Commerce, we end up with lousy government and lousy public services, and we pay the price for it."
"Die Quickly," indeed.
Grayson joins a rising chorus of activists, organizers, politicians and family members who are trying to humanize the American aging process. While the economy reflects a sloping trend toward health-care workers making less money to care for a growing sector of the population, Grayson claims that this "doesn't have to be a crisis" as long as we are "paying attention."
"In Florida, we need to lobby for the inclusion of home care in Medicare. It doesn't really make sense logically that Medicare will pay for a nursing home but Medicare will not pay to keep you in your own home," he says. "That's a simple change that could be accomplished with a two-page bill. And, you know, we'll try. We have our Seniors Have Eyes, Ears and Teeth Act, which extends Medicare to cover eyeglasses, hearing aids, dental work and annual vision checkups. The fact is that seniors have a head and inside that head are eyes, ears and teeth, at least in most cases."
National organizations like Caring Across Generations are picking up on the ground game. They've held the "Eldercare Dialogues" between various rights groups in 2013 to brainstorm feasible solutions and put faces to the statistics. The director of the National Domestic Workers Alliance, which participated in the discussions, Ai-Jen Poo, releases a book this week that weaves together the stories and the statistics with an eye to solutions: The Age of Dignity: Preparing for the Elder Boom in a Changing America.
"Beyond the traditional communications hat, one of the ways the campaign is working is on a culture change, and trying to get folks to talk about it so it becomes a political issue," says Caring Across Generations communications director Janet Kim. "It's hard when there's so much preparation that goes into education, college prep and even with retirement at that last stage of life, people don't necessarily think about how we can live well during those last years. And the more denial that surrounds it, it becomes an institutional conversation, and I think a lot of policies are biased toward that even though [institutional care] is so expensive. Like, an average nursing home is more than $80,000 per year, and more than 90 percent of people prefer to age at home. There's a huge disconnect."
Much of that disconnect, says Caring Across Generations director of policy and partnerships Josie Kalipeni, comes from people not knowing about the so-called "care gap" and the ways that Medicare doesn't actually cover all end-of-life needs. Moreover, with Social Security and Medicaid under attack at the federal and state levels, people couldn't possibly know exactly where they stand or where they fall. The politics have confused the issue more than they have clarified it. And, as Boggs has found out, the politics aren't terribly movable right now.
"I think the politics and the policies are part of the solution, but ultimately the conversation is about how do you want to age, how do you want your parents to age, how do you want your siblings to age?" Kalipeni says. "And it's really that conversation that needs to be elevated. I also think that we're in a time when it's a collision of those aging and long-term care needs that are colliding with core economic issues like employment and a workforce that is going to supply those needs. Florida is one of those states where there is always a need."