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Speak Up for Your Rights
What does it mean to be an advocate? Being an advocate is a person who supports rights on behalf of another. One of
the most important attributes on being an advocate for your loved one is the willingness and the ability to
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speak up and keep your eye on the ultimate goal which is protecting the health and
safety of you and your family. In the world
of medicine it is particularly important for all of us to become as educated as possible about how the system works and
therefore be in a position to get the best care possible.
It would be nice if there was an indisputable instruction manual for family caregivers to follow but since each family’s
situation is unique a “one size fits all” approach just doesn’t work. On the job training tends to go with the territory
of family caregiving and it often takes a great deal of time and energy to navigate through the sometimes complicated
medical care labyrinth. However, it can be manageable.
NFCA encourages family caregivers to become effective advocates for our loved ones as well as ourselves as one of the
first steps to making our lives more manageable. We need to become empowered, proactive, creative and resourceful in
acquiring the information and the help we need.
A first step to take is to improve your communications (PDF) with your loved one’s medical team. Additional ways to advocate for your family include:
Empowerment for Family Caregivers
What does it mean to become empowered? NFCA defines empowerment as a sense of confidence in your ability to bring about
positive changes in your circumstances and to rise above the day to day challenges you face in your caregiver journey.
It’s the optimism we strive for to take a positive approach in an effort to achieve a better quality of life for ourselves
and our family. Sometimes it is the tiny changes we make in our lives which can have the most profound impact towards a
much healthier and positive outlook.
Four Principles to Live By Include:
- Believe in yourself and take charge of your life.
- Protect your health
- Reach out for help
- Speak up for your rights
Skills Needed for Advocating for your Loved One:
- Educate yourself regarding your loved ones illness/and or disability.
- Communicate efficiently and succinctly with healthcare professionals.
- Recognize you are a healthcare consumer and deserve quality healthcare.
- Understand you are an important member of the healthcare team.
- Give input and ask questions.
- Pick your battles and don’t sweat the small stuff.
- Realize that sometimes it is the squeaky wheel which produces results.
Please go to our Tips and Tools section to find more information about caregiving skills.
Advocacy and Activism- There is a Difference
The difference between advocacy and activism is determined by the number of people our actions affect.
- Advocacy by an individual can directly improve care for a patient
- Activism is organized public participation that can serve a group of individuals and can alter institutional and
professional policies, curricula and standards of care. Our
Public Policy section talks about ongoing legislation to benefit caregivers.
We all go through varying stages of emotions when our lives have been transformed by becoming a family caregiver. Research
has shown there are five stages of grief: denial, anger, bargaining, depression and acceptance. All of these emotions are
part of the framework which makes up our learning to adjust and cope to our life as a family caregiver while we watch someone
we love struggle with chronic illness.
On occasion some become sufficiently angry and search for ways to deal with their anger by channeling it into a constructive
endeavor and caring enough to become activists for a much larger cause. Sometimes we will find the energy and passion not only
to advocate for our loved one’s well-being but for all family caregivers.
Ways to Get Involved
By coming to this web site you have been an advocate for yourself and your loved one. We also hope you will become an activist
by speaking to others about the issues facing your family and others, and by writing or calling the leaders in your community,
your state and at the federal level.
One exciting result of family caregiving activism is the National Family Medical Leave Act. This was the result of the tireless
work of activists across the country. California actually went a step further and passed a bill to actually pay for family
medical leave and it came about because individuals like you thought it fundamentally important to the lives of family caregivers.
Find ideas on
How to Get Involved here.
Thoughts from Helen Keller
The extraordinary Helen Keller, despite being blind and deaf, achieved so much in her life. She once said:
“The world is moved not only by the mighty shoves of the heroes, but also by the aggregate of the tiny pushes of each honest worker.”
Each of us is an “honest worker” caring so deeply about our loved one and giving so much of ourselves to help them. If we all push a little we can move mountains and ourselves. We are so intertwined, we caregivers and care recipients, that rules and regulations that are aimed at helping them also help us, and rules and regulations that are designed to help us also help them.
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