THE TWO-WAY STREET OF CAREGIVING
A Widow Bit – May 24, 2009
By Mary Koch

            Total up all the millions of dollars spent on Mother’s Day cards, flowers, candy, restaurant dinners and expensive gifts, and it would not equal the wealth of joy I’m experiencing, caring for my mother in her final weeks of life.

            What a reward to ease the pain of the woman who bore pain in my birthing. What an honor to hear her murmur “Oh, that feels good” as I gently rinse her face with a warm cloth. What a privilege to hear her call out my name with the same trust she once heard when I called, “Mommy!” “Mom!” “Mother!”

            I am not alone in this rich experience. Some 44 million Americans, according to recent surveys, are privileged to care for an aging or disabled family member, friend or neighbor.

            Our theoretical “value” to the national economy is $375 billion annually. That’s about twice what is spent on nursing home and paid in-home care combined.  But the real worth of this caregiving relationship – both on the giving and receiving ends – is beyond price. And we caregivers know it.

            The majority of caregivers responding to a survey by the National Alliance for Caregiving described their experience with positive words like “rewarding,” “loving,” and “grateful.” Nonetheless, numerous surveys in recent years have documented the substantial sacrifices – financial, emotional and physical – made by many caregivers.

            Nearly a third of the people who provide intensive hands-on care report having physical and/or mental health problems as a result. Of course we’re stressed when the one we love is suffering or dying. On top of that is the stress of dealing with our broken health care system and financial issues. Fully half of caregivers take unpaid time off from work; some opt for part-time or less demanding jobs, and some quit work altogether – often losing their own health insurance as a result.

            Consequently, caregivers tend to be unprepared financially for their own future care. One reason may be that they spend, on average, about $2,000 a year out of pocket for special food, home modifications and other items for their care recipient – equal to what they could be putting into an IRA.

            Much of this stress could be relieved through improved public policy: universal health care access, tax credits, and enhanced resources and education for family caregivers. Even though there are some excellent organizations (National Alliance for Caregiving, National Family Caregiving Association) championing the cause, they are not among the big-money lobbies sitting at the table this summer as Congress and the President debate health care reform.

            My experience of these past few weeks is an example of what family caregiving should be like. Years of caring for my husband gave me the skills and confidence to tend to Mother – lessons learned the hard way, but learned nevertheless. A network of solid support protects me from burnout.

            Best of all, I’m here because I want to be; it’s a final precious gift from me to her, from her to me. Every caregiver should have that privilege.