Advocating for Your Family
Standing Up for ALL Caregiving Families
By Suzanne Mintz

If you've been reading TAKE CARE! for a while, you know that NFCA strongly believes that family caregivers need to become strong advocates for their loved ones and themselves, and that we must be proactive and resourceful in finding the information and help that we need. Having said that, we also recognize how difficult it is for already overburdened caregivers to find the energy and wherewithal to battle unresponsive healthcare and social services systems, and, unfortunately, sometimes other family members as well, to meet a loved one's needs, especially if being a fighter doesn't come naturally.

But we also know that many of you have done just that. You've found an inner strength you didn't know you had and have made an effort-indeed, are making an effort every day-to resolve yet another problem with the insurance company, put the pieces in place that will allow you to get away for a day of respite, or track down the cardiologist and get him to coordinate with your loved one's primary care doctor. It's hard to be an advocate for yourself and your loved one, but if you-or someone you delegate-are not, then life will be that much more difficult, because the services and support we need, unfortunately, aren't part of a seamless whole.

Being an advocate means recognizing that you and your loved ones are healthcare consumers and, as such, are owed good quality care, respect, and responsiveness. Being an advocate means recognizing that the squeaky wheel is often the only one that gets attention in a busy system. Being an advocate means fighting for what you believe is right-whether that is an extra day in the hospital or a timely report on a new set of tests. It's getting your boss to understand that you need some time off, but that you have a plan in place for meeting your responsibilities to the company. Being an advocate is also about getting at least one other family member to recognize that now and then you are going to need a break and they are going to have to chip in with hands-on care.

The dictionary defines "advocate" as both a noun and a verb. As a verb, it means "pleading on behalf of something or someone." A suggested synonym is the word "support." Using that definition, you may have long been an advocate without even realizing it. In NFCA's 2001 Survey of Self-Identified Family Caregivers, those individuals who acknowledged to themselves, and others, that they were family caregivers were more likely to be strong advocates than those who hadn't. They were more likely to seek out resources and talk directly with their loved one's doctor. They were more likely to recognize that being an advocate was one of the most important things they could do for their loved one.

Parents know that it is important to "pick your battles" so that you aren't arguing with your kids all of the time, and so that when you do put your foot down, they know that you mean it. Another way of expressing the same thing is to say, "Don't sweat the small stuff." All of this is good advice for family caregivers who have to conserve their energy and decide what's worth making a fuss over and fighting for. Just recognizing what is important enough to expend your energy on is a big step and a positive advocacy approach.

Some of us are sufficiently angry that we find the energy not only to advocate for our loved one's well-being, but also for all family caregivers. When that happens we become activists in a larger cause. Once we recognize that we are not alone in experiencing caregiving hassles, once we acknowledge that the caregiving issues that are lived every day behind our own closed doors are also lived by millions of other families behind their closed doors, we wake up to the fact that family caregiving is more than a personal issue. We realize that it is a phenomenon of life in the 21st century; one that our country is only now waking up to as an issue that will affect every family in America before we know it. When we know in our hearts that we are not alone, and when we believe that our lives as family caregivers are made that much harder because of antiquated policies and systems, that's often when we wake up to the fact that we not only need to advocate for our loved one and ourselves, but that we must stand up for all caregiving families. That's when we become not only advocates but also activists.

What does it mean to be an activist instead of, or in addition to, an advocate? My friend Ira Byock, a noted doctor who is a leader in the palliative care movement, described the difference between advocacy and action in an article entitled, "Advocacy and Activism: Missing Pieces in the Quest to Improve End-of-Life Care," which he authored with some of his colleagues.

"Advocacy by individuals can directly improve care for a patient. However, organized public participation, or activism, is required to alter institutional and professional policies, curricula and standards of care. The individuals who are involved in activism may be patients and their families. However, patient and family involvement is activism rather than advocacy if improving care for groups of patients or systems of care is a goal.

"Sometimes actions can have both advocacy and activism as concomitant goals."

I consider myself to be both an advocate and an activist. Every time I seek out information about a new treatment for MS, every time I make a phone call to find out why there hasn't been follow through on an insurance claim, I am acting as an advocate for my husband, Steven.

When I write articles like this one, speak with legislators, or explain to other family caregivers how our healthcare system is making our lives harder, I am being an activist. And as Helen Keller noted, lots of little efforts on the part of many different people can move mountains.

Do you recall the outcry over insurance company rules that were sending mothers home from the hospital less than 24 hours after giving birth? Did you know that it was the public outcry of lots of moms and dads and others who care about women's health making phone calls and writing letters that brought about the reversal in policy? Are you aware that the reason there is a national Family Medical Leave Act is because of the tireless work of activists across the country and that California just passed a bill that calls for payment for family medical leave? It is the first state in the country to do so, and it came about because individuals like you thought it sufficiently important that they picked up the phone and told their elected officials what they wanted to see happen. The point in all the stories is not how much we do individually, but, rather, that change is brought about by many of us working together.

The time is right for caregiver advocacy and activism. I'd like to believe that the vast majority of you who are reading this article are already advocating for your loved one and, hopefully, for yourselves as well. And I'd like to believe that I can convince many of you to join with me in an activist movement in support of caregiving families. I have dedicated myself to being a public voice for family caregivers, but family caregivers must dedicate themselves to backing up my individual voice with their own actions-no matter how small.

Suzanne Mintz is President and Co-Founder of NFCA.