A publicist, attempting to link her client to National Family Caregivers Month, just sent me a pitch asking that I write about how an adult coloring book is a way “to relieve caregiving stress.”
May I just say this? Family caregivers don’t need coloring books. What we need is help and money. Physical help, and real-life green dollar bills.
We need someone to drive our loved ones to the doctor for us so we can go to work, to sit with us while we wait endless hours in hospitals, to bring over some meals or offer to fetch our kids from the school bus.
We need professionally trained nurses to do what we are expected to do: clean ports, help with toileting and hygiene, dress wounds, treat bedsores, give injections, handle catheters and test blood for glucose.
We need relief that someone other than us pays for. We don’t want to have to beg our adult siblings to help take care of Mom so that we can get a haircut. We don’t want to pay for adult day care so that we can watch our daughter in the school play. We need to be able to take a vacation, go away overnight, get away from our caregiving responsibilities and have time to ourselves.
We need the government to realize that at 34 million strong and growing every day, we are the nation’s largest unpaid workforce and should we ever revolt en masse, the country will be up the proverbial creek. We save the government $522 billion a year. Maybe we can actually get paid for some of our labor?
We need legal protection in the workplace so that our caregiving jobs don’t wind up costing us our real jobs. We need employer-sponsored benefits that reflect the concerns of older workers ― not just time off for maternity leave, but time off for elder care. The practice of treating employees with caregiving responsibilities less favorably than other employees is called Family Responsibilities Discrimination. AARP studied FRD and found that most federal and state statutes do not expressly prohibit this form of discrimination. There are no laws to protect working caregivers as a specific group or class from discrimination.
We need more than a mere tax credit to reimburse us for our out-of-pocket expenses. We need an assurance that when we are forced to step out of the workforce to care for a loved one, our own Social Security benefits aren’t decimated. Benefits are based on the highest 35 years of earning. Dropping out of the workforce reduces that.
We need acknowledgement that family caregivers are likely to enter their own retirement with less saved ― and address it.
And yes, we need help with caregiver stress. It’s that stress and the fact we often ignore our own health, that causes so many of us to die before our patients.
But a coloring book? No, that’s not what we need and to suggest it trivializes the scope of the problem. As one caregiver quipped, “Like who has time to color, anyway?”