Many years ago, when I was 12, my parents divorced and my mother left our suburban Phoenix home and her kids to start a new life in Berkeley. Later, when I was a young adult trying to understand why she had left, a friend of my mother’s told me: “You’ve got to understand. Back then, women didn’t talk.” I didn’t get it. Meaning? Meaning, she said, that in the 1960s and early ’70s women felt it was part of their job to pretend to be content in the house with their kids. If you were dissatisfied, you kept it to yourself. Each lonely, bored housewife faced her unhappiness on her own. In those days, she told me, a woman like my mother, who was brilliant and college-educated and felt trapped, was on her own, and in some cases the strain was simply too much.
This was the conversation that came back to me last year. So many stories. So much experience. So much need for help! Yet until I volunteered my own story, usually in a socially inappropriate setting, it stayed quiet, “personal.” It was as if we were being graded on coping stoically. Broaching the subject and confessing desperation was like uttering the password to a secret brotherhood of beleaguered, overwhelmed, weary, or sometimes just resigned adult caregivers. But the sect seemed ashamed to be seen.
As I reached my own breaking point, two things happened. First, my father caught sight of my distress. He would not accept assisted living on his own account, but when I told him that he was already in assisted living but that I was the assistance; that I was overwhelmed, underqualified, and barely hanging on emotionally; that I wanted to be his son again, not a nurse and nag and adversary—when I told him all that, and when his sister and the social worker chimed in, he acceded. He was still, after all, my father, and it was still his job, he understood, to care for me. Second, the inevitable happened. As his disease overtook him, not even he could deny his incapacity. And so he moved, reluctantly, to a nearby assisted-living place, which gave me the help I needed and, to no one’s surprise but his own, gave my father more rather than less independence. Another phase of the story then unfolded, ending with his death in December. His last gesture to me, so very characteristic, was to wave me away. He wanted me to go on with my life rather than hover by his bedside.
I did go on, but I emerged from the whole experience not a little indignant. The medical infrastructure for elder care in America is good, very good. But the cultural infrastructure is all but nonexistent. How can it be that so many people like me are so completely unprepared for what is, after all, one of life’s near certainties?
I am now convinced that millions of middle-aged Americans need more help than they are getting, and that the critical step toward solving the problem is a cultural change akin to the one demanded by feminists in the 1960s. Betty Friedan, in her landmark 1963 book, The Feminine Mystique, famously called the housewife’s endemic loneliness and boredom “the problem that has no name.”
Suddenly they realized they all shared the same problem, the problem that has no name. They began, hesitantly, to talk about it. Later, after they had picked up their children at nursery school and taken them home to nap, two of the women cried, in sheer relief, just to know they were not alone. Gradually I came to realize that the problem that has no name was shared by countless women in America.
Though their situation is obviously different, today’s invisible caregivers face their own version of a nameless problem. They are being asked to do alone and out of sight what in fact requires not just private sympathy and toleration but public acknowledgment and proactive assistance.
I would put special emphasis on the word proactive. There are resources out there to tap, to be sure. Once you begin looking, you can find them. Thanks to a personal connection, I was able to find the invaluable social worker. Banging around on Amazon, I found a few books on elder care, which were mildly useful (but really too generic). Had I looked harder, I might have discovered the Web site of the Family Caregiver Alliance (www.caregiver.org), which offers a wealth of fact sheets; the National Alliance for Caregiving (www.caregiving.org), which offers an online tool to help coordinate care; strengthforcaring.com, which offers “Share Your Story” and “Meet Other Caregivers” bulletin boards. To get this stuff, however, you have to go look for it, which means you have to have some idea of what you need, and I didn’t. What I needed was for the experts to find me and tell me what I needed.
And, indeed, to explain why I needed it. I can say, from experience, that convincing caregivers they need help is not easy, at least not until they need it too much. Americans pride themselves on resilience and independence. We don’t want to burden others with our problems. We don’t like to acknowledge that a crisis is happening or imminent. Above all, we prefer to assume that our own and our parents’ declines will be smooth and uneventful. By keeping the problem out of sight and consigning it to the realm of the “personal,” the culture enables our natural tendencies toward denial, procrastination, and silence.
At one point, as I struggled with my father’s crisis, I joked to friends that we should all be given time off work at age 40 to take a course on elder care. I no longer see this as such a joke. A few big companies, realizing that caregiving responsibilities drain employees’ time and productivity, are making available seminars like Powerful Tools for Caregivers, a six-week course on subjects like “Taking Care of You” and “Mastering Caregiving Decisions.” That seems like exactly the right idea. If employers can provide seated massages and host blood drives, surely they could be a conduit for elder-care training and information. Surely toll-free hotlines would not be so hard to set up and publicize ubiquitously. Surely HR departments and health providers and clergy could be trained to respond, on learning that an employee or patient or congregant has an elder-care “issue,” with a nudge toward resources, rather than just, “I’m so sorry for what you must be going through.”
What we need even more than that, though, is for our nameless problem to be plucked out of the realm of the personal and brought into full public view, where help can find us. In the years after Betty Friedan named their problem, women who work in the home (formerly “housewives”) demanded and got a new infrastructure for support: opportunities to study and work at home, part-time job opportunities, public and private help with child care, social networks, and so on. Perhaps more important, they demanded and got society’s recognition that they were providing an indispensable public good. As a result, they are not isolated or silent anymore, and they do not need to put up with being lonely or bored. Keeping today’s invisible infrastructure of caregivers out of sight is as stressful and wasteful and pointless as leaving millions of women feeling stranded at home once was. My mother’s friend and the feminists of her generation fundamentally had it right. There should be no need for anyone to go through this alone, and no glory in trying.