Candidates for public office understand that most American families are juggling incompatible career and family obligations, largely on their own. Not as widely debated is the connection between low voter turn-out and the intolerable burdens placed upon our voters in the middle. In the middle between rich and poor, between young and old, between having safety nets and not having any, as a result of outsourced jobs, corporate restructurings, and the demands of caretaking without sufficient support, voters are dropping out of the political process in droves.
I have worked in health care all of my adult life, as a critical care and public health nurse working with migrant workers, as a health care attorney representing medical staffs and hospitals, as a health care consultant for a leading state senator for whom I helped develop the political will to address the childhood obesity epidemic in California, as a strategist for a major Democratic candidate whose stance on universal access to health care and embryonic stem cell research differed from that of his extremist opponent, and most recently as the political advisor to an organization supporting stem cell research.
I thought I understood the intersection between health care policy and how it might play out in the political and real worlds.
But I was wrong. Nothing I have done professionally has prepared me for my own family experiencing in the last couple years, in no particular order, Alzheimer’s Disease, Stage 4 cancer, a bicoastal living arrangement preceded by a major job re-structuring, followed by a job demotion due to the voluntary moving home because of yet another illness in a family member, followed by yet another job loss caused by a corporate restructuring, the diagnosis of a condition resulting in the inability to fully use a right arm, followed by major surgery and complications resulting in an emergency readmission, and thousands of dollars in medical bills, and a mental health crisis, costing thousands of dollars, not covered by insurance.
On one frenetic day, I was arranging to have my candidate meet several area thought leaders to discuss universal health care while I was careening from one frustrating appointment to another, attempting to straighten away my father’s health and living needs. I was asking why the senior bus service that would take my father from the Board & Care home to the adult day care program was not linked so if the program was closed, the Board & Care operator and bus driver wouldn’t be surprised, leaving my father stranded, with his lunchbox in hand, with me incidentally called out of a meeting once again. On another day, I was attempting to secure the consultation of a hospital-based internist who could determine why my mother wasn’t healing from a knee replacement surgery. Laying out a case for a CAT scan to an orthopedist not inclined to look at a patient’s internal medicine needs, to determine if my mother had a gastric bleed or, worse, a tumor, in the evening, I was discussing relative health outcomes from the other industrialized nations that offer less fragmented universal health care, by day.
On another fateful day, I began paying for my mother’s $2,400 monthly chemo costs because she had hit her so-called donut hole, as the new Medicare gap in coverage is so fatuously named. My husband and I had been supplementing my parents’ meager Social Security for years, but now, facing college expenses for our third child and a pending merger with a likely job loss, we were literally choosing between our child’s and a parent’s future.
Now, I know that I am mostly lucky despite the health and job crises in my family in the last few years. I could have a child wearing inadequate body armor in Iraq rather than one talking on a couch to a therapist or working with a physical therapist to regain the use of an arm. That same combat veteran is likely coming home to inexcusably long waits for care for physical and mental health needs that I don’t have to deal with.
Moreover, my family still has access to health care coverage — through COBRA — for a few more months anyway. My husband and I both have marketable skills and an adequate investment account. But most families, especially those headed up by single parents, many of whom are drowning in caretaking hell and debt, along with those dealing with returning combat veterans whose needs are not being met, are likely making easy choices about getting a loved one to a doctor versus stopping at a polling place to vote, because any change promised in our health care delivery system is too ethereal and too far off to help a loved one stop hurting right now.
I have had a window into the living rooms of many such caretakers this last year, and I can say with certainty that voting isn’t high up on their daily crisis to-do list.
Until candidates appreciate that an increasing number of middle class families are terrified of losing their jobs, pensions, health care benefits and homes, in addition to experiencing the mind-numbing exhaustion that accompanies caretaking in these fragmented United States, Republicans, already adept at exploiting fear and scapegoating others more unfortunate as a means of swinging elections, will likely keep winning, as they target the dwindling numbers of middle class voters still voting.
Policies in place in most other industrialized nations designed to facilitate the provision of appropriate and linked housing and health services for the very young, ill and elderly, along with the continuation of jobs and benefits for caretakers and family members, are not the norm here. Is it any surprise that in France, home of the best health care system in the world by all credible measurements, also enjoys significant participation in the political process?
The U.S. had better brace itself for a tsunami of caretakers and their families falling out of the middle class, and choosing not to participate in the electoral process altogether. Whereas medical costs associated with only one ill family-member accounted for the majority of personal bankruptcy filings over the last decade, increasingly caretakers are sharing my experience, caring for multiple family members, and sadly, often with disastrous consequences.
Consider this: Within 50 years, the incidence of Alzheimer’s is projected to triple, and if current trends continue, one out of every three babies born in the U.S. in 2000 will develop Type 2 diabetes. And right now, we are looking at one out of every 152 births resulting in autism, that number being one out of ninety for boys. Asthma rates are growing as well, and currently in many counties in California, one in six children have such severe asthma they need prescription medication to breathe and must consult a color-coded flag flying at local schools to determine if it is safe to go outside and play. Added to this caretaking mix, are the increasing numbers of adolescents and young adults experiencing anxiety-related conditions, including depression, eating disorders, and substance abuse. One recent study indicated that almost 1 in 10 new college students are showing up on campus already having been prescribed psychotropic drugs.
Voter turn-out will likely continue to suffer as well. In my conversations with other family members sitting with their loved ones in the HMO chemo room, I was initially startled to learn, in response to my questions, how few individuals were voting or even paying attention to the presidential campaign, though most blamed politicians of both parties for not caring. Their reasons? They were too tired, too spent, too disheartened to care to learn more. I now understand voter apathy. Indeed, though I have long been a passionate progressive, I found myself nodding with my new friends, and finding that I had much more in common with these folks than party affiliation might otherwise indicate. I have come to learn that party affiliation is typically chosen when young — well before the age of loss, and its cousin, wisdom.
I also know that when voter turn-out goes down, Democrats typically lose elections and this fact is not lost on the Karl Roves of the world.
It is also unlikely that without a significant shift in public policy American caretakers will be able to remain in the workforce while caring for, say, a mother with Alzheimer’s, a teenager with an eating disorder, and a young child with autism or diabetes. It is also quite possible, given the diminution of family income, that the family will be unable to continue to purchase health insurance for the very conditions causing the wage-earner to drop out of the workforce in the first place.
A vicious cycle of illness, job loss, and personal bankruptcy is sure to negatively impact the many families that will be challenged by multiple caretaking. This will be true notwithstanding the acquisition of college educations, mortgages and health insurance, once harbingers of solid middle class.
So why aren’t more people speaking out? Creating a movement to lobby for the policies all of us need to take care of the people we love?
Because we are overwhelmed. But for many boomer caretakers it is also because we have heard for years how good we have it and how difficult our parents’ lives were in comparison. And though this may be true in some ways, some of us bought the ‘times are great so go shopping’ admonitions by our shopper-in-chief and gave in to our materialist inclinations and purchased flat screen TVs and remodeled our houses with new granite countertops and Subzero refrigerators even though most of our parents wouldn’t have dreamed of spending money they didn’t have in the bank.
I can’t help but wonder whether our own aversion to holding politicians responsible for the failure to adopt universal health care and other policies designed to support families has at least something to do with a demographic paradigm; a sort of collective guilt after a long bender, a new age existential justification that we’ve brought some of our bad fortune on ourselves by believing that we were somehow exempt from the sort of losses and disappointments our parents experienced.
But we are starting to understand that we could lose everything. Our parents’ sepia-colored stories of the Great Depression were collectively believed to be something that happened to them, not us.
It is imperative that those of us who are emerging from caretaking hell, hallmarked by isolation and chaos, speak for those who cannot take the time to speak out and break the silence, running the risk of being labeled weak, by pointing out that families aren’t meant to do all of this on their own. Not and have a productive, healthy workforce to pay taxes, take care of the next generation of seniors, build and maintain our democracy, and keep our bridges and mines from collapsing.
Presidential candidates need to pay attention. Don’t talk about earning a voter’s trust until you talk about true universal access to health care and a rational system for pricing drugs. Don’t talk about family values until there is pension protection, and job protection for workers who are caring for children and/or ill parents. And let’s work on a comprehensive infrastructure so each family isn’t left on their own to figure out the patchwork that is our nation’s confusing social services and health care labyrinth.
A savvy candidate would be discussing these issues and doing something now for the real voters in the middle. To do nothing is not only inhumane … it may increase the odds of Karl Rove’s Permanent Republican Majority coming about after all.