Nearly 40 years ago, when I was in elementary school, a controlling teacher would issue edicts about what we could and could not do: We could not talk at lunch time, nor could girls wear shorts. In both cases, my lawyer-father encouraged me to launch petitions. I wrote a paragraph about the unfair practices, stapled together a pile of loose-leaf paper, which I circulated at recess, in class, and on the bus. After a week or so, I presented the document—perhaps 100 children had signed, and some parents—to the principal. He was unaware of the rules! And, upon hearing them, reversed them. It was my first attempt at community organizing and pushing back against a policy that was making my life nearly unbearable.
It’s been years, and I’ve occasionally signed petitions exhorting various government agencies to act—or not act—on one issue or another. But until recently, my own petition-bearing days had ended.
In the course of a Twitter chat—where you can actually learn and share more than one might expect within the 140-character limit—someone raised the question of what we could get our government to do to improve the lives of the nation’s 60 million family caregivers. Someone suggested creating a Peace Corps-like program to recruit new graduates to serve family caregivers. I immediately volunteered to launch a petition to do just this, and wrote one on the White House website, which encourages such civic engagement.
My petition is very short. It seemed to me that in the context of trying to raise interest and garner signatures, I needed to be to the point (http://wh.gov/GURc). It reads:
We petition the Obama Administration to: Create a Caregiver Corps that would include debt forgiveness for college graduates to care for our elders. More than 60 million Americans are family caregivers. They face challenges: Health suffers. Finances suffer. Families suffer. Aging Boomers will overwhelm our caregiving resources. Let’s create a Caregiver Corps, that would marry college debt forgiveness with programs that place recent graduates with families and aging services providers. Let’s bridge the generational divide that promotes ageism. Let’s do it!
One of my Twitter followers advised adding more detail to my call. Absent it, she said, no one would take me seriously. So, here it is.
Several factors are bearing down to create a future that will leave families and our beloved elders overwhelmed, exhausted, and bankrupted by the challenges of living with old old age–that is, living past 80–with multiple chronic conditions that will, no matter what you do, kill you. In any given year, some 60 million Americans play the role of family caregivers to another adult who is either old, disabled, or both. (And millions more care for children and young adults who live with serious disabilities.)
These families will run square into a medical system that is ill-equipped to care for them—at least, in terms of providing the kinds of care they will really need, which will not be about rescue and cure. To be sure, they’ll have plenty of access to ICUs and new hips and knees—but they will be shocked and disheartened by the costs of all the things they will need to pay for on their own—private-duty nurses, for instance, and home care; transportation and food and long-term care facilities. Unless they become Medicaid beneficiaries or have a good long-term care policy, those costs will be out of pocket—and unaffordable for most middle class Americans. And the social services agencies meant to serve them continue to be devastated by short-sighted budget cuts. Sequestration alone, one estimate suggests, will eliminate 800,000 Meals on Wheels in the State of Maryland.
And there will be few people to provide the hands-on care that these adults will need. The nation faces a profound shortage of people trained in geriatric care, from geriatricians to nurses to direct care workers. These shortages stem, in part, from the relatively low pay geriatricians earn, and the outright unlivable wage direct care workers receive. By one estimate, by 2030, when all of those Boomers are in their dotage, there will be one geriatrician for every 20,000 older adults.
What’s a country to do? Launch a Caregiver Corps, a program modeled on similar valuable, successful, and long-lived efforts, such as the Peace Corps, AmeriCorps, VISTA, and Teach for America. Such a program could recruit volunteers from several pools: high school graduates not trained for the workforce; college graduates facing a tough economy and huge undergraduate debt; and older adults, those healthy enough to want to remain in the workforce and contribute to others’ well-being.
Volunteers could sign up for a year or two. In exchange for their service, they could earn tuition credits to cover the cost of college; they could receive some degree of loan forgiveness, to lessen the burden of debt; they could be paid a stipend that acknowledges the value of their work. They could be assigned to community-based organizations that serve older adults, such as Area Agencies on Aging, non-profit health care institutions, social services agencies, and others. While they could offer enthusiasm, compassion, and insight, they could also learn the kinds of skills required to care for an older adult and his or her family. They could learn about the public policies that affect that care. They could acquire medical and nursing skills—the kind of skills family caregivers use routinely in their daily routine. They could be exposed to older people, and bridge the generational gap that splits our country on this demographic. In the end, they might even be inspired to pursue a career that features caring for one another.
That, it seems to me, is something Americans have always done best—and will have to do more, as we all reach our own old age. Developing people who have the skills, resources, and motivation to help us in our self-interest. And it is in theirs, too. Millenials face the highest unemployment of any group in the country, and finding ways to become marketable, employable adults is critical to their own security and future.
So, let’s try it. Let’s create a Caregiver Corps. Let’s get the Administration to think about it, and weigh in. It’s time, really, to move forward.
Janice Lynch Shuster is a senior writer at the Center for Elder Care and Advanced Illness, Altarum Institute. She is anchoring THIS WEEK’s (as in tomorrow) Sunday Dialogue of the New York Times: in print Tuesday and Sunday. You can find more information here.
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I am an only child who just finished 12 years of caregiving for both my mother and father. Since I am self-supporting, I had to keep working and had also started a doctorate before this began. I did shifts along with hired caregivers and handled all the paperwork involved with paying above the table…. Dad died 2 years ago and mom passed away 2 weeks ago. I pulled one all nighter a week and usually slept 3 hours a night to make this happen for them. I gave up all personal activities including exercise…but would do so again in a minute as they got to stay at home where they were comfortable and where they had individual attention. I often could not get to the grocery store or to the drug store ….even someone to run errands is helpful. This is a great idea and one that must be implemented before the next generation is in the same situation.
I just read this and had a moment of why haven’t I or anyone ever thought about or started something like that? This is a brilliant idea, not only does it help the elderly financially and in a caregiving sense but also our future generations have more of an opportunity to go to school and make a better life for themselves when their turn comes to be taken care of, so bravo and I hope this takes off.
Donahue,
Thanks for your enthusiasm and support. Please email me at info@medicaring.org so that we can discuss more.
Best,
Janice
Janice, I love this idea, and my partner and I want to help. We are a gerontologist and RN that teamed up to make a useful website for dementia caregivers: without just parroting news articles or shilling products.
If we can add our voice or our effort to creating a caregiver corp. please point us in the right direction. thanks, Donahue Vanderhider, MSG
Janice,
I love your tenacity and suggestion. Fantastic idea.
It provide real life experience for high school students and college students. It does take a village to care and provide care and I think its wonderful.
As a healthcare provider and one who started my caregiving role young, I know first hand how hard and difficult It can be to navigate health, school, docots appointments, medication management, career, taking care of young children and caring for grandma and aging parents.
My co-founder and I created CareNovateMag.com (http://www.carenovatemag.com), which is a free healthcare platform that connects caregivers, parents, young & adults caring for their loved ones, senior/elder caregivers with caregiving content, medication literacy insights and social health information. We educate via Twitter chats #Carerx, teleclass, articles, BlogTalkRadio and expert interviews.
I already shared your petition and signed it. Good luck with this effort and email me via info@carenovate.com if you need any further assistance with your efforts.
Dr G!
Mr. Mills: We would be most happy to have your help in spreading the word to people who visit your website. The deadline to have 100K signatures is Friday. We have about 1875 right now, so quite a ways to go.
However, we plan to continue to investigate the idea, and see how we might make it a reality. I would be happy to talk to you some more, and learn more about the eCareDiary work that you created.
Let’s be in touch. You can email me via info@medicaring.org
Thank you!
Janice
This is a wonderful idea. I am co-founder of eCareDiary,com, a website which provides tools, information and services for family caregivers. It was founded out of my personal experience as a caregiver for my father who had Parkinson’s disease for over a decade.
We reach an audience of over 70,000 people via our website, social media, and radio show. We would love to help you with this project. Please let us know how we can do so.
John
You are absolutely right about the need for caregivers. Youth needs both emotional connections with their elders and financial opportunities. I work with a state agency supporting long term services. The greatest growth in my caseload is with young stroke victims, ages 38-55. The issue is disability as much as aging. Keep up the fight.
New Jersey Advanced Pain Management Center provide individually tailored plans to treat & cure your rheumatism as quickly as possible.
I saw your petition and signed it. What a marvelous idea. This would assist in the care of home bound people. Many states have introduced a caregiver choice for long term care. It is an expense that Medicare does not cover but Medicaid does. However, most people who require this type of care do not have Medicaid and end up paying out of pocket. This is an expense many can barely afford. In turn, caregivers are poorly paid and many go without health care benefits. Very good idea for school credits. A great benefit to all.
Thank you for those kind words, Jay. I will share them with my dad, who is on his way over for Easter cookout! He and my mom have inspired the direction my life has taken, and I am every grateful to them for teaching me the importance of sharing ourselves to make the world a better place.
I will keep you posted as we progress. We need many voices working in many arenas to make the Corps a reality.
Thank you,
Janice
You raise an excellent concept Janice, and being the nostalgic I am, I love seeing that your earliest experiences with activism were spurred into action by your father – who it’s wonderful seeing lives on to inspire people through you.
It’s impossible to overlook the power of community in fostering sustainability as we work through life’s difficult challenges involving health and aging related issues in our loved ones.
Thank you for your leadership in this role you’re developing and through your excellent writings.
Count me one of your biggest fans!
Hi Bonnie:
I just turned 50; my parents are 69….I have had periods in which I have been involved in helping to care for my father during his cancer treatments, but he and my mom have (so far) been able to stay in their own home.
Of course, family matters in caregiving–but we need to acknowledge that the altruism of caregiving takes a significant toll on the health (physical and mental) and security (financial and job). They simply cannot do it all on their own. Caregivers over the age of 75 provide more than 35 hours each week of care to an aging loved one, usually a spouse. This work exhausts and bankrupts families. I think they need help and support from others in the community.
There’s an interesting stat, that may be an urban myth: The factor that keeps you out of a nursing home–or puts you in one–is having 3 or more daughters or daughters-in-law who are willing to care for you.
70 million Boomers are going to be more than families can manage. They/we had fewer children than our predecessors and so have fewer caregivers on whom to rely. Our children were hit hard by the recession, and do not have the resources to care for elders. The financial hit of caregiving is more than they can bear. And a remarkable number of female Boomers never married or had children, and face a future in which they will have to rely on the kindness of friends and strangers.
We want families and older, frail adults to enjoy a good quality of life; to have the care, comfort, and support they need; to have meaningful interactions that limit isolation. The Caregiver Corps would be a step in that direction.
Your idea is, indeed, quite refreshing. Some thoughts and questions however.
I don’t know your age, but I am soon to turn age 65.
When my parents aged, I brought them to live with me.
My parents did the same for their parents.
My son assures me that he will do the same for me.
Michelle Obama’s mother lives with the Obama family.
Even were she not the First Lady I assume she would
continue caring for her mom.
At what point in our culture did caring for our parents end? And why?
Would appreciate any feedback. Thank you.
Yes! My idea is that volunteers could come from any phase/stage of life–minimum of high school diploma, though. Incentives appropriate to their path would be offered (ie, some elders might want tuition assistance for lifelong learning opportunities. These are the issues we need to consider and address as we roll out a corps that meets everyone’s needs to share time, treasure, and talent.
Great idea! But could it not be expanded a bit to include service between high school and college? Instead of paying down existing debt, the service would accumulate vouchers towards a college education.
The maturity created by a year or two of service before college could so improve the eventual college educational outcomes. In my experience as a ExPCV and long time college instructor, too many young people see college as a rite of passage to be endured. Real world service experiences are such good lessons about the value of actually learning as much as possible about the world.
Mighty Casey and John…thank you for you comments. There will be opportunities to do more. Please email me via info@medicaring.org and I will reply quickly.
Caring for my parents in the last 2+ years of their lives, as they sank beneath the waves due to Parkinson’s (dad) and complex co-morbidities due to pituitary removal 20+ years prior (mom), literally bankrupted me. Their care was paid for by my father’s military and civil service retiree benefits, as well as the LTC policy my dad was smart enough to buy for mom’s care when the policies first hit the market.
Managing their care, however, was uncompensated – I did it, I regretting not one single minute, but a combination of factors, of which the 24/7/365 care management was one, made it impossible for me to continue business development on my own behalf. So … hello, bankruptcy court. My financial status was declared dead three days before my dad was. In the intervening years, thanks to – again – a number of factors, not least of which are my own cancer journey and the global economic meltdown, have kept me on pretty short rations.
Short version? Your idea is bloody brilliant. There’s so much potential here, both systems-thinking-wise and boots-on-the-ground-wise, that it seems like a literal no-brainer. I’ve signed it. I’ve tweeted it. Let me know how else I can help.
huh!
No have nothing else to do except wait and see.
got a point!!!!
Strikes me as a stroke of genius. I became a senior care-giver by default in my post-retirement years and have been doing it one way or another over ten years. The place where I worked first had 180 independent and 40 assisted living residents. They sponsored me for continuing ed classes in gerontology at a local university which was a real eye-opening experience. When I left full-time employment and moved I began with an agency and have never been short of assignments. The money is not great but neither are the demands. For me it’s partly for the money and partly a ministry.
Newly-minted graduates who spend even a year as senior care-givers would enter the workforce much more well-balanced than their peers, having seen and experience first-hand what to expect when the day arrives when they and their own older family members can no longer work. As one of my 98 year old clients said “They call it the golden age. Hell, it’s the cast iron age.” Most people have no idea what’s in their future as they come to the end of life.
Another great need you didn’t mention specifically is care-giving for a population of casualties of the wars in Iraq and Afghanistan. I have had more than a few assignments with veterans, many of whom will need personal care for the rest of their lives. Good luck with your initiative. I hope it snowballs.