Caregiving is a Poverty Issue

Many times we talk or think about caregiving as a separate social issue from poverty or disability issues. We often picture caregiving in scenarios involving older folks with a well spouse caring for an ill spouse, or an adult child taking care of an aging or ill parent. Occasionally we extend that picture-story to those caring for someone with cancer.

But caregiving is also a poverty issue and it is frequently ignored even by those who are poverty advocates. Caregiver economics are part of caregiver stress. Part of the blind spot is that we rarely see past the crisis that throws a family into caregiving: the cancer diagnosis, the surgery gone wrong, the ICU, the nursing home. But poverty begins after chemo is complete and after the ICU and after the discharge to home. In most situations both employed adults have lost their employment—one to illness and one to caregiving. Few families can absorb one lost income, even fewer can lose two.

We also forget or don’t extend our imaginations to the flip side: How can families in poverty cope with stroke, heart attack, chronic disability and cancer—which is fast becoming a chronic disability. People living in poverty can’t go to Cancer Clubs and Chemo Yoga and they don’t have friends to drive them to treatment three times a week and friends in poverty can’t bring the extra hot meal. This is the hidden face of caregiving and these are hidden aspects of poverty.

Here are some stats from the National Family caregivers Association:

Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI).

Study conducted by researchers at Rice University

and data compiled from the Health and Retirement Study

funded by the National Institute of Aging and conducted by the University of Michigan, 1992-2004

Caregiving families have median incomes that are more than 15% lower than non-caregiving families. In every state the poverty rate is higher among families with members with a chronic illness or disability than among families without.

Disability and American Families: 2000, Census 2000 Special Reports, July 2005.

During the 2009 economic downturn, 1 in 5 family caregivers had to move into the same home with their loved ones to cut expenses.

Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving;

National Alliance for Caregiving and Evercare. March 2009

Poverty and Cancer

It’s election time and as a friend pointed out to me, “No one is talking about poor people”. Even Democrats are staying in the safety zone of discussing the “struggling Middle Class”. But here in Cancer Land we have to talk about cancer and poor people.

People living in poverty take a much harder hit from cancer.

One reason cancer is harder on people living in poverty is that they are diagnosed later in their illness. They have less routine screening and less preventative care. Yes, I know there are all those “free” screening tests available, but really, if you are poor, have a couple of kids, no car and work a part-time job you are most likely having to choose between milk, Pampers and the $6-9 round trip bus fare to go to a health center (and spend the day waiting) for your “free” test.

So you cross your fingers and wait. You take your kids to the doctor but put off your physical or Pap test or Mammogram. Forget colonoscopy—who’s going to drive you home?

So it takes a lump or some bleeding or some pain to get your attention and by then things have advanced.  And then…it’s still different if you are living in poverty.

Our romantic ideal—and my reality, maybe yours too if you’ve had cancer—is being surrounded by friends and family who help you. The caregiver support group. We had an amazing team of helpers for John—meals, rides, laundry, errands. And one of the reasons that happened is that we have a lot of friends who drive, who have appliances, who have jobs with lots of flexibility, who have discretionary income—who have middle class lives.

But if you have been in poverty for a while it’s probable that your friends are poor too. So they can’t give you rides, or take your kids, or give you a week’s meals. And no, your best friends are not taking you out to lunch and pitching in for that $800 chemo wig. Not gonna happen. Emotional support for sure but no practical stuff.

And if the caregiver resource center or the support groups or the yoga classes are in the suburbs guess who gets to go? Yeah, even if it’s free it doesn’t really help.

Those of us who have had cancer—or a loved one with cancer and were able to do it the middle class way  (just the relief of having a car) have to think about those extra blessings. And then we have to figure out what we can do to give a lift to those who don’t.