Some of you know something about me. I have lived with depression of one sort or another all my life, mostly dysthymia, a constant low-level depression, but have also had several descents into major depression. I hesitate to call them episodes, since my most recent major depression lasted at least a decade.
Then a couple of years ago I wrote a story about the year of the family caregiver, and saw that there was another way to conceptualize those years.
KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
A number of major life changes happened to me in the early 1990's - my son came to live with me in 1992 and was legally adopted two years later; I began to have serious financial problems since I was having a hard time finding work; I lost my house to foreclosure and declared bankruptcy; I lost family members to death and estrangement. In the face of such stresses, it really made sense to look at my problems in terms of depression.
When I looked into myself for reasons, as depressives generally do, there was no shortage of causes either. As a new mother, I had less interest and energy for a job search; as my energy decreased, I needed to conserve energy for parenting so my job interviews were not stellar; was I sabotaging myself?
And yet the reality was strong. It took a lot of time to work with my son's school, service providers, and to find activity programs which often meant applying for financial aid which itself was stressful. And I had chosen to become a single parent and waited some 18 months between my application process and the placement. I enjoyed being his mother and doing all these things that were part of it. Yet when the long-awaited legalization finally arrived, I found myself weeping for the loss of his babyhood, and felt a sense of anti-climax.
I won't go through the problems of his adolescence and young adulthood; I have written about them already. The point is that I chose to become his mother, and that being a parent naturally involves a great deal of joy and thought and work. I never considered myself as a family caretaker; I was a mother. Caretakers were spouses who took care of sick or disabled spouses, children who took care of ageing, ailing parents.
I was shocked by what I found when writing about family caretakers.
I wrote the article in 2010, and the statistics are earlier still, but I would guess that things have not gotten better; in these times, they may even be worse.
More than 65 million Americans provide care for someone who is chronically ill, disabled, or elderly who is either a family member or a friend. This is almost thirty percent of our population. 1.4 million of them are children between 8 and 18, taking care of a parent or grandparent, though they are seldom solely responsible. They provide these services without receiving payment for them, but the cost to our country as a whole is enormous. The family caregiver suffers economically, financially, in health and psychological well-being. Over 60% of them are also employed, two thirds are women, and many also have children under 18 living at home. Since the average time spent in actual caretaking activities is 20 hours a week, we can predict that some of their other responsibilities will suffer.
But this still didn't apply to me, did it?
Some two thirds of caregivers have had to miss work, change work schedules, or take a leave of absence to care for their loved one. Parents caring for a disabled child report poorer performance at work. American businesses can lose as much as $34 billion a year because of employees caring for family members over 50. Their health care costs are 8% higher for family caregivers because family caregivers are often in poorer health than non-caregivers. They are more likely than non-caregiving peers to miss medical appointments, more likely to suffer depression including major depression.
All too common among caregivers were depression, poor physical health, financial problems, bankruptcy. I was not alone.
After a few years as a parent, I could hardly imagine working full time. What would I do about IEP meetings, being called to his school when he was sick, dealing with the courts and other agencies? Even working part-time "mother's hours," I sometimes had to leave early when I got called. Yet I believed, and felt guilty, that I was to blame for not finding a job in my profession. My ambivalence, my depression, was coming through in interviews.
And I never was officially unemployed. I continued to work in low-paying part-time jobs until I couldn't even do that. When I decided to apply for disability, I felt like I was scamming and that others would look askance when I told them. In fact, they generally expressed relief. I wasn't fooling anyone but myself.
When financial difficulties began, my therapy was one of the first things to go. I had no health insurance, and had never used insurance for therapy anyway. But for other health needs - well, dentist visits stopped except in emergencies. My weight went up, as did my blood pressure as I found out when I found a free clinic for basic health care. And medical visits most often resulted in prescriptions I could not afford to fill. I was not eligible for Medicaid because my son was insured through the adoption subsidy program. A worker once suggested that I give up the subsidy and apply for welfare so I would get Medicaid. Of course, that was nonsensical.
I waited so long to apply for SSDI that my Medicare began only a month or two after my checks - out of an 18-month wait from the start of benefits. Which was lucky, since only a month or two later I needed a hysterectomy for what turned out to be the earliest stages of endometrial cancer.
This country does not value families, as most people here will agree. All these statistics and my own story illustrate that clearly, and with increasing financial inequality, I'm sure the situation has not improved.