Gail Sheehy: Easing the Financial Burden on America’s Caregivers

Will family caregivers get government help before they go broke?

Family caregivers are the largest group in the workforce—65 million Americans who provide unpaid care for a chronically ill, disabled or aged family member. The value of the services they give free to our society is estimated to be $375 billion a year. That is almost twice as much as the government spends on homecare and nursing home services combined ($158 billion).

I spent last week at the annual Aging in America conference, where 3700 professionals in the field of aging gather to exchange ideas and information. These are all passionate advocates for older Americans and their adult children — but nowhere did I hear new hope for easing the financial burden of working caregivers.

Three-quarters of caregivers do work for a living as well as look after family members who are chronically or seriously ill or lingering with dementia. How do they manage this most challenging and extended passage?

They give up their savings, sell their homes, often move into the same home with their frail loved ones to cut expenses, and face the constant danger of being fired for their divided concentration between family and work.

Will family caregivers get government help before they go broke?

We know that 47% of working caregivers say the increases in caregiving expenses has caused them to use up all or most of their savings, according to the 2009 Survey of the Economic Downturn and Its Impact on Family Caregiving by Evercare and The National Alliance for Caregiving (NAC). Women who are family caregivers are two-and-a-half times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI).

But it’s the physical toll taken by the stress of unpaid caregiving that may be the greater cost to families and society. The shadow heroes who provide long-term care for their family members by and large don’t see doctors for themselves, don’t have time to exercise and develop poor eating habits. Nearly a quarter of family caregivers who look after aging loved ones for five years or more report their health is fair or poor, according to AARP and NAC.

Forty to 70% of family caregivers have clinically significant symptoms of depression. Research has shown that the stress of caregiving can trigger an underlying predisposition to depress or other mental illness. Even celebrities with all kinds of resources can be taken down by the shock and sadness of caregiving.

Catherine Zeta-Jones fell into depression when her husband, actor Michael Douglas, went through brutal treatment for stage 4 throat cancer last fall. The actress couldn’t sleep or get out of bed even to meet a few friends at a restaurant. She was diagnosed in March with bipolar disorder and checked into a mental health facility.

The stress of caregiving for a family member with dementia is even more severe. It has been shown to impact a person’s immune system for up to three years after their caregiving ends, according to the National Academy of Sciences.

In the current cost-slashing environment, why should corporate America care if family caregivers have to foot the entire bill for keeping mom and dad going? One reason: caregivers for elderly loved ones cost employers 8% more in health care costs estimated to be worth $13.4 billion per year. And business takes a heavy hit from lost productivity by caregivers.

Kathy Greenlee, President Obama’s Assistant Secretary on Aging, addressed the Conference without ever mentioning the program which she is charged to implement: The CLASS Act. A year ago, when President Obama signed this bill into law, it was heralded as a long-term health insurance plan offered by the federal government to working Americans who could voluntarily enroll through their employers. The CLASS plan would provide participants with the cash to help pay for needed caregiving assistance if they become functionally limited.

In other words, they could pay their family caregivers a minimum of $50 a day. But the budget-cutters in prominence in Congress have put the law through a buzz saw. Secretary Greenlee is tasked, by law, to release details of the plan by Oct.1, 2012. She refuses to be interviewed about it. She has said that she won’t put forward a plan that is not financially sustainable.

I can’t help but wonder, don’t the budget-busters have aging parents, too?

Journalist and lecturer Gail Sheehy is the author of 16 books about adult life stages, including Passages in Caregiving: Turning Chaos into Confidence. This story appears in USA Today


3 Responses so far.

  1. avatar Chris Glass` says:

    Until you become a caregiver you never realize the extreme sacrifices that it can to care for another person. I had to quit work to provide for my father-in-law’s physical care. We spent thousands of dollars to cover medical expenses before I managed to get him enrolled in the VA system. We were one of the lucky families because we had the savings to be able to help him. That money came out of a fund that we hoped would see us through retirement. We have just about worn out a vehicle with all of his medical trips and running back and forth to the Veterans Home he resides in now.

    That kind of care doesn’t just hit you financially it wears out your health as well as mentally and emotionally depleting you as a person. For some families care giving is a pit they will never climb out of financially. They can’t work and provide care at the same time. That leads to a lack of health insurance for the caregiver because no work often means that there is no health insurance. If something happens they have to spend down what assets they do have to qualify for indigent care putting them in a more precarious position. It is a sad commentary on our social system that there is no safety net for such families.

  2. avatar Barbara says:

    Please everyone give this hard thought. A large percentage of us become caregivers at some point in our lives. Interesting that the first thought is that there should be a government program to help. This from the same people who insist on small government? Let people be self-sufficient? Let retirees (aside from those already older who presumably are consistent voters) worry about themselves, with only a little discount card to use in the free (expensive) market?
    Every time I hear about a disaster where a politician is declaring an emergency and asking for federal funds or someone brings forward a problem where they want government assistance, I want to shout “How are you paying for that? You wanted to cut all spending! You don’t think it’s right to ask millionaires to chip in a little to ensure support for some of these programs!” Anyone who is a “tea partier” should not be allowed to benefit from government programs!

  3. avatar Bella Mia says:

    The millionaires leave, they pull up stakes and move to a different state. In the meantime, Warren Buffet collects social security because wealthy Americans are not allowed to opt out.

    I wonder if it ever occurred to people when they were making choices to limit their family size to one or two children, or declining to have children at all – who would take care of them in their later years. Asian cultures feel it is honorable to care for the elderly. The Hollywood-driven American youth culture teaches young people to live for today, don’t make sacrifices for your parents, think mostly about themselves.

    Our friends have 8 children, (all college graduates) 44 grandchildren, and our friends feel loved, supported and cherished. I don’t expect that the burden of their later care will fall one just one person.