In a recent survey, The Washington Post asked white women and black women about their outlook and priorities when it comes to issues such as money, religion, and marriage. And in many cases, they found very big differences. But when it came to one issue, there was no disagreement at all.  You guessed it: Caregiving.

Nearly two-thirds of both African-American and white women worried about family members suffering from chronic disease, according to the survey. And half worried about being responsible for an aging family.  

The Post survey, which was focused on black women, did not look at Hispanics at all. But in 2008, the National Alliance for Caregiving did survey Hispanics. And  while the details were different, the story was  pretty much the same. About a third of Hispanic households had at least one caregiver and three-quarters are women. That suggests the overall percentage of family caregivers is a bit lower than the population at large while the percentage of women is somewhat higher.  But their experiences would be familiar to the white and black women inteviwed by The Post.  

If you are a woman–no matter your race, educational level, or income–caregiving responsibilities are never far from your mind. It may be a reflection of  how the country has changed–and how it has not– that black women now worry as much about being victims of discrimination as they do about caring for aging relatives.

Yet, while the U.S. has made great strides since the 1960s to end racial discrimination, and since the 1970s to reduce gender discrimination, it has done surprisingly little in recent decades to help alleviate the burden on caregivers. If anything, in some respects the nation seems to be backsliding.

For instance, the House of Representatives is likely to vote later today to repeal the CLASS Act which, for all its flaws, had the potential to help support the care needs of the frail elderly and other adults with disabilities. While CLASS will remain alive until the Senate follows suit, its future is limited at best. And few in Washington are exploring alternatives.

At the same time, there is little chance Congress will vote this year to reauthorize the Older Americans Act, the federal government’s primary tool for supporting the non-medical needs of the elderly. Senior centers, job training programs, Meals and Wheels and other food programs, as well as information services are all funded by the law, which is about to expire. 

That doesn’t mean Congress would stop funding these programs. But without the act, it will be easier for Congress to slash them. In recent years, budgets for many Older Americans Act programs  have been frozen. And they are likely to be targeted for deeper cuts. 

Working women pay a financial, emotional, and physical price for caregiving. They suffer high rates of depression and illness. When they take on a greater share of the caregiving burden, they often must cut back on their own working hours and sometimes even quit their jobs. That not only reduces their curent houshold income but also means they’ll have less from Social Security, pensions, and other retirement income when they age. And that, in turn, will place a greater burden on their daughters.

That’s bad news, no matter what your race. The challenge for society is to find ways to relieve their burdens in an era of fiscal constraints.

Why are caregivers for the elderly such bad advocates? There are 40-60  million Americans caring for loved ones yet their needs are widely ignored by the political system.  Thus, politicians rarely rouse themselves to do much to help, and when budget-cutting time comes, what little assistance there is often ends up on the block.

The inability of caregivers to organize politically was a major topic of discussion at the AARP’s recent caregiving forum, where I joined nine other authors on elder care issues. Both the panelists and the audience seemed enormously frustrated that caregivers are unable to get their message out.

Jon Rauch, a Washington journalist and keen observer of politics, wondered why there is no “Occupy Elder Care” movement given the obvious need and the great numbers of family caregivers. He reminded the audience of the success of civil rights movements in recent decades–whether for African-Americans, women or gays. Why, he asked, can’t caregivers for frail seniors do that?

Interestingly, advocates for people with disabilities and their caregivers are very good at this. The Americans with Disabilities Act is just one example of how they have influenced policy. 

Why? In part it is because people with disabilities can be powerful advocates for themselves while the frail elderly often cannot.

Another reason is that their caregivers have very different perspectives. A mother may care for a developmentally disabled child  for decades. She may have built a strong support network of friends, family, and other parents of DD kids. And because her child may be spending several hours a day in school, she has time to organize or contact politicians.

It is different for those caring for elderly parents or spouses. They often have no network of support. They have no free time. And their caregiving experience is often time-limited. It may last a few months or a few years. Rarely, it will last five years or more.

Most important, it ends with death. Every time. And when it is over, caregivers often want to put the experience behind them. The last thing most want to do is relive it  for some politician.

Going back to Jon’s question: Your race, gender or sexual orientation is a fundamental part of what you are –and what you are for your entire life. But caring for a parent or aging spouse is not. It is usually a transitory and difficult event. While it lasts, it is all-consuming. But then it is over, and you are no longer a caregiver. You are what you were before.   

Finally, a word about organized lobbying groups. There are plenty of big, powerful organizations in Washington that represent , in some way, the interests of the frail elderly and their families. But they often have other issues on their plate.  For AARP–the biggest–caregiving must compete with issues such as Medicare and Social Security for attention.

 Similarly, the top legislative goal for disease-oriented groups such as the Alzheimer’s Association is often research funding, not caregiving. 

There are a handful of groups that do attempt to represent caregivers. For example, the National Family Caregivers Association (whose founder, Suzanne Mintz participated in our panel), and the Family Caregiver Alliance advocate. Caring from a Distance provides support for long-distance caregivers. And the National Alliance for Caregiving does research and program development. But while these groups are energetic and important, they are small and struggle to attract attention. 

Thus, caregivers remain largely forgotten by the political system.  It is a shame. But it is true.

When I was caring for my parents, I thought what I was doing was both the hardest thing I had ever done and the most rewarding. Now, an important new study suggests I was not alone.

The study, called Caregiving in the U.S., is an important snapshot of what life is like for those providing assistance to aging parents, as well as young adults and children with disabilities. The study concludes that a staggering 65 million Americans are providing some assistance to their loved ones. About 17 million are caring for special needs children. The rest–nearly 50 million– are helping the frail elderly or adults with disabilities.  

Who are these caregivers? Keep this picture in your mind: A 48-year old woman caring for her elderly mother. She is trying to hold down a job even as she spends about 20 hours a week helping her mom, something she’s been doing for four years. There is a good chance she is taking time off work to help her mother with transportation, shopping, managing finances, taking medications, and even getting in and out of bed. 

She is getting help when she can from other family members and friends. About 40 percent rely on paid aides for some help, although that’s significantly fewer than in 2004, the last time the survey was done. And about 40 percent feel their caregiving puts a “high burden” on them. 

Among those caring for someone 50 and older, the picture is a bit different. Caregivers are older–more than half are over 50 themselves. They are, typically, helping a 77-year-old widow who is living in her own home and who may be suffering from dementia.

The study was done by the National Alliance for Caregiving along with AARP, and funded by the MetLife Foundation. It follows similar studies published in 1997 and 2004. Read it.