Linda's Little Book of Caregiving

Informal. Unpaid. Caregivers in the United States, whatever the statisticians call us, number in the millions. Statisticians love numbers and percentages. 29% of the population. 66 million people. Any organization that keeps track does so based on self-reporting. My estimate is closer to 100 million people engaged in caregiving. I'm not sure surveys administered to caregivers, when identified, are accurate for this reason alone: caregivers think of the persons receiving the care before they think of themselves. And caregivers may be prone to underestimating the amount of daily living activities they perform, when they report at all. I participated in a Wayne State University graduate student's survey via telephone interview. I started crying 1/3 through because I could not keep it straight who the survey was about. I kept answering on behalf of my father and brother. Me! I'm the caregiver. Adding to this loss of self are workshops that claim to be for caregivers, when the session is actually about the caree. Remember to have an extra handbag for when mother loses hers is not about the caregiver. These misrepresented sessions add guilt to the stew. One I attended was displayed on the library sign "Caregiving." 2 hour session, and with 20 minutes left, I raised my hand to ask when we were going to get to the part about caregiving. The moderator was surprised. Really? Later, looking at the handout, it dawned: the session was put on by an assisted living facility. It wasn't about us at all. A friend and I went to an inaptly named Caregiver Conference a couple years ago. Some of the workshops were about the caregiver. But the booths were about paid assistance, products for the caree, not the carer. Paid in-home health work. Stand-in bathtubs. Handrails. We were dismayed. No booth offering free neck and head massage. No gifts for caregivers. No booth just thanking us for doing what we do. We pledged to have a booth the following year, but do we describe ourselves as a nonprofit? When we can't sleep we look at the internet for caregiver help. We know it's a loving job, doing [your higher power name here] work, but we still can't sleep, we're losing our hair and our strength, and damn it, when is it about us? Ah, well, we read that caregivers have health issues. Some are predeceasing their loved ones. And site after site reminding us we're unpaid. We don't give a flying fig how much our work is worth. We do care how we can keep our selves, our sanity, and a modicum of independence. We need to know we have sisters who are struggling to maintain well-being. We are who this book is about. All those big numbers, personalized. Me, my friends and the gallant tired carers who need to know we're not crazy. Or alone.