Caregivers & The Family and Medical Leave Act

At some point in our lives most of us will need to provide care for a parent or family member. Whether or not we're able to do this on our own or with the aid of a professional, medical assistance for a loved one is an issue none of us welcome but, know one day, will be a necessary inevitability. The question is, how do we best prepare for it, and then manage it, when the time comes?

2013 marks the 20th anniversary of the passage of The Family and Medical Leave Act, the very first piece of legislation under the Clinton Administration. This landmark legislation guaranteed caregivers up to 12 weeks to spend more time with their loved ones in times of emotional and physical distress. The  graphic chart below shows the dramatic shift from 1992, the year before the enacted legislation, compared to twenty years later. 

President Clinton revisited his legislation in an op-ed piece for Politico.com  Here it is, in its entirety.

The late 20th century will be remembered for the onset of dramatic economic, social, environmental and political changes which continue to challenge us at home and abroad. Though our increasingly interdependent global economy allowed people across the world to trade, invest, communicate, debate, and make common cause at a level never before imaginable, the news was not all good. 

In the U.S., middle class incomes began to stagnate in the 1980s, child poverty was rising, as were welfare rolls, teen pregnancy, crime rates, and income inequality. More and more of the nation’s growth was benefiting those already doing well. 

By 1993, the patterns of family life had been changing for decades. Between 1965 and 1992, the percentage of mothers with children working outside the home had grown from 35 to 67 percent, giving women new opportunities and allowing middle class families that once prospered on a single paycheck to maintain their lifestyles with two incomes. Meanwhile, single parent households had become much more common in America, growing from 16 to 27 percent of families between 1975 and 1992. Many children in these homes were living in poverty even when their parents, usually mothers, worked. 

These stark developments caused many to question whether, in spite of our progress toward gender and racial equality, the American Dream could survive the turmoil. Therefore, the question most Americans wanted those of us running for the White House in 1992 to answer were: how can we restore the American Dream for those who work hard and play by the rules? How can we empower the poor to work their way into the middle class? How can hard-pressed parents do a good job at work and at home with their kids? 

Americans had tired of the typical answers. They knew that government alone couldn’t cure our social and economic ills. But after 12 years of Republican rule, they also knew that government neglect was making things worse. The ‘government is the problem’ mantra proved to be another way of saying to the middle class and the aspiring poor: “you’re on your own.” 

As a candidate for president, I was determined to move beyond the dead-end debate between entitlement and neglect to a policy of empowerment, “a common sense path that offers more opportunity to families in return for more personal responsibility.” That meant, among other things, supporting initiatives that both increased employment and strengthened families. 

Twenty years ago today, barely more than two weeks into my presidency, I stood in the White House Rose Garden to sign the Family and Medical Leave Act (FMLA), which provided millions of Americans with the opportunity to take time off to care for a new child or sick relative. It was then and remains today the embodiment of my governing philosophy of empowerment through opportunity and responsibility. To this day, I receive more thanks from citizens for the FMLA than any other single piece of legislation I signed into law. Between 1991 and 1997, the percentage of full-time employees in large and medium-sized businesses taking maternity leave grew from 37 to 93 percent. By the time I had left office, 35 million Americans had taken leave, and estimates today suggest that number has grown to 100 million. 

They all have a story, like the father who brought his cancer-stricken daughter on a White House tour. He told me she was very ill and probably wouldn’t make it, but the months he’d taken off from work to be with her were the most important months of his life. Or the flight attendant who told me about both her parents falling ill at the same time, with only her and her sister to take care of them. Without FMLA, they couldn’t have done it. She said, “All politicians talk about family values, but I think how your parents die is an important family value.” 

Near the end of my administration, I argued that we needed to find “new ways to provide paid leave to those workers who need to take off but cannot afford to do so.” Most advanced nations provide some form of paid family leave, and it’s helped, not hurt, their economies. A growing chorus is now working on how to make that dream a reality here, and they deserve our support. 

There are few greater joys for me as a private citizen than seeing the impact the FMLA has had on hardworking Americans over the last 20 years. In the face of new economic and social challenges, America found a way to revive what de Tocqueville called “the habits of the heart.” And that may be the FMLA’s most enduring lesson. If we can once again infuse our nation with opportunity for every family, and responsibility from every individual, the foundations of American exceptionalism can survive and thrive in the face of today’s challenges. 

President Bill Clinton

Founder, William J. Clinton Foundation 42nd President of the United States

William Jefferson…

http://www.clintonfoundation.org/main/clinton-foundation-blog/celebrating-20-years-of-the-family-medical-leave-act.html

Despite the rise of unemployment, the demographics of the current workforce have significantly changed over the past twenty years.  More spouses and single parents work, allowing for less available people to act as primary caregivers for an ever increasing amount of baby boomers who now need additional care.

This increase in responsibilities on more and more individuals also requires monitoring of their personal well being. The National Family Caregiver Association recommends ten helpful reminders for caregivers.

1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in seeking professional counseling..
3. When people offer to help, accept it.  No one is a martyr. Don't be afraid to suggest specific thing they can do for you.
4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
5. Recognize the difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
6. Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to the physical health of your back and be extra careful. Remember, if you injure yourself, you will be of no use to your loved one.
8. Grieve your loss, and then allow yourself time to dream new dreams.
9. Seek support from other caregivers. Knowing you are not alone builds emotional strength.
10. Stand up for your legal rights as a caregiver and a citizen.

While it's paramount for caregivers to prioritize time to "care for themselves", they must clearly understand their roles in providing quality care to a loved one. You must be ready to assist both your patient's obvious physical and emotional needs, as well as any direct care that may be instructed by the patient's provider.

Another crucial function caregivers must recognize is to provide advocacy services. Integrating patient advocacy into the daily routine of caregiver activities is a challenge. The caregiver needs to be a conduit between the patient and the patient's provider. Listen to your patient and learn to speak on their behalf.  Many patients are unable to adequately communicate their feelings and symptoms to the provider. In this case, it's up to the caregiver to act as the "interpreter". Be their eyes and ears. Many of us have been in the situation where a doctor is directly talking to us, giving us instruction and feedback, only to have missed many of the salient points of the discussion.  An intelligent, healthy advocate, at our side. to ask questions and take notes is critical.

A final reminder for all present and future caregivers. We all age and need assistance. We all get sick. None of us want to be dependent on another individual. But if you can care responsibly with compassion and love, you can offer some grace and dignity we all rightfully deserve.

Stay Informed. Stay Healthy. Stay Alive
- The Patient's Advocate