Wednesday, October 22, 2014

Caregivers face many challenges

Posted on Nov. 11, 2012 at 12:00 a.m.

MICHELLE SINGLETARY

THE COLOR OF MONEY

WASHINGTON — I watched my father-in-law take his last breath.

Since mid-summer, my husband and I had been caring for his father, who was 83 and had lung cancer. A nurse working for the hospice company had warned us that we might not have much more time with him.

I had feared a business trip would keep me from being there. I arrived home an hour and half before he passed away.

He waited for me. I believe that was his gift to me — to be able to have closure. I’m so grateful that I was with him, along with my husband and the long-term care aide who gave so much of herself during the last year of his life.

You probably didn’t know that November is National Caregivers Month. And you probably didn’t know because there aren’t any big celebrations to mark the occasion. No, the 65 million people who give their time and money to care for sick or disabled relatives, most of them elderly, do so in relative obscurity.

Following one of my more difficult moments caring for my father-in-law, a friend sent me a link to a public service announcement created by the Ad Council and AARP. You can find it on YouTube. Search for “Caregiving: Ad Council PSA — Silent Scream.” The 32-second video captures caregivers silently screaming from the frustrations, paperwork and money issues that come with the job. I cried while watching it. Still the ad made me feel better knowing that I wasn’t alone or wrong in wanting to let my emotions show.

“Family caregivers are really a natural treasure,” said John Schall, chief executive of the National Family Caregivers Association.

The association began promoting the celebration of family caregivers in 1994. One of the pressing concerns facing our leaders is rising health care costs, especially for sick, disabled and elderly citizens.

Immediately following the election, talk turned to the fiscal cliff — expiring tax cuts and major across-the-board federal spending cuts — facing the nation. But there’s another looming crisis: the caregiver cliff. Caregivers are taking time off from work, and thus risking their jobs, or tapping into their limited resources to provide care. They are stressed and often neglect their own health needs.

Consider these statistics collected from various studies by the National Family Caregivers Association:

Ÿ The value of the services family caregivers provide for free is estimated to be $450 billion a year. This is almost twice as much as what is spent on home care and nursing home services combined, Schall said.

Ÿ About 66 percent of family caregivers are women. More than 37 percent have children or grandchildren under 18 living with them. As the mother of three, I certainly can attest to the struggle of being sandwiched between two generations that need your help on a daily basis.

Ÿ Family caregivers spend an average of 20 hours per week providing care. Thirteen percent provide 40 hours of care a week or more. By the time my father-in-law came to live with us, he needed care around the clock. He couldn’t perform any activities of daily living such as feeding, bathing or dressing himself. Even with two shifts of aides, there were gaps that had to be filled by my husband and me.

Ÿ Nearly 80 percent of adults in need of long-term care depend on family and friends as their only source of help.

My father-in-law was a good saver and had enough money to pay for aides. But so many others aren’t so fortunate. During the 2009 economic downturn, one in five family caregivers had to move into the same home as their relative to cut expenses.

There’s another figure that I need to point out. Forty-seven percent of caregivers who work say that paying for caregiving expenses has caused them to use up all or most of their savings.

The answer in this crisis isn’t that we rely less on family caregivers. It’s not solely depending on government assistance. It’s going to take a combination of solutions. For example, legislation introduced this year in the Senate would establish a federal tax credit to assist with the costs of caring for an aging family member. Or, Schall said, we could give Social Security credits for those who become full-time caregivers.

“From a national perspective, if we are serious about reducing health care costs, we have to invest in family caregiving,” he said.

This issue affects so many people. If not you, then probably somebody you know.

Readers can write to Michelle Singletary c/o The Washington Post, 1150 15th St., N.W., Washington, D.C. 20071. Her email address is singletarym@washpost.com. Comments and questions are welcome, but due to the volume of mail, personal responses may not be possible. Please also note comments or questions may be used in a future column, with the writer’s name, unless a specific request to do otherwise is indicated.

© 2012, Washington Post Writers Group