Caregivers play many important roles in their journey of providing care to someone they love - one is that of ADVOCATE. Caregivers advocate on behalf of their loved ones all the time to assure they receive the necessary medical care and support, and that their needs are heard.
As caregivers we're good at caring for and advocating for our loved ones' care and concerns. What about us? Who's advocating for the caregiver? It turns out not only is Courage to Caregivers advocating for family caregivers - many other agencies are as well (check out the second section of resources below).
It's also important as caregivers to advocate for ourselves - self-advocacy. What do you NEED? What are YOUR goals, values, interests and desires? Your loved one, as the patient, has rights (and responsibilities) ... and you do, too!
We see self-advocacy as self-care. Self-advocacy is three-tiered - knowing yourself, knowing what your needs are, and knowing how to get your needs met.
The Self Advocate Net has a great definition of self-advocacy: "Self-advocacy is the ability to speak up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings. The goal of self-advocacy is for you to decide what you want then develop and carry out a plan to help you get it."
5 TOOLS TO ADVOCATE FOR YOURSELF:
- NOTICE: What do you NEED? What are your goals, values, interests, and desires? As you focus on building self-awareness, use self-reflection. Remember KNOWLEDGE is power.
-
SELF-EMPOWERMENT: Self-empowerment allows you to see more in yourself. Self-empowerment starts with BELIEVING in yourself. Notice your SELF-TALK: Stop and reframe. SELF-RESPECT: How can you empower YOURSELF? SELF-WORTH: You are worthy of love, kindness and respect. PERSEVERANCE: Don't give up when things get tough!
-
YOU'RE NEVER ALONE: Having a SUPPORT NETWORK to support you in your self-advocacy journey is essential. Find someone to fit each of your needs - mental, emotional, social, physical, resources, financial or even validation. Who's cheering you on, and believes in you? Join a support group - our group coaching is a great form of support network!
-
SELF-REGULATION: Regulating with the 7 Cs:
-
I didn’t cause it: Accepting you didn't cause your loved one's illness releases feelings of guilt and shame.
-
I can’t cure it: Care - support - love.
-
I can’t control it: You can't force someone else's recovery. You can support and encourage.
-
I can’t change it: Acceptance. My loved one is living with mental illness. Therefore, I am a mental illness caregiver.
-
YET, I can have courage, compassion and I can COPE.
-
EFFECTIVE COMMUNICATION: Caregivers exist in community, whether it is you and your loved one or you and a large family or other system. Learning to be assertive as you communicate will help you in the long run to solve problems, advocate for yourself and help maintain relationships and healthy boundaries. USE "I" LANGUAGE to express your feelings and take responsibility for them.
If it's been awhile since you’ve considered your own needs as a caregiver, find even a micro-moment today to start prioritizing them.
|
Self-Advocacy: Know yourself, know what you need, know how to get it!
|
ADVOCACY AFFIRMATIONS
Use affirmations to inspire you or reframe your thoughts
-
I am my own best advocate.
-
To take care of others, I need to take care of myself.
-
I believe in myself.
-
As a caregiver, advocacy is vital to obtaining the resources I need to thrive.
-
I am never alone in my journey. I'm grateful for all the people who have supported me along the way.
-
I calmly express my needs and desires.
-
I treat myself with kindness and love.
APPS FOR ADVOCACY
-
CaringBridge: allows you and your support network to stay in touch. The app offers a space for multiple caregivers and family members to share pertinent information, such as updates, encouragement, and arranging care.
-
Lotsa Helping Hands: a caregiving app that helps you create a community of care around your loved one. You can invite family, friends, volunteers, and care aides to join and then manage everything from sitters and errands to appointments and family gatherings.
-
IanaCare: was designed to equip and empower caregivers with the resources and support they need. Organize caregiver teams and request or receive help from family and friends.
-
Carely: Create a personal social network made up of the people you share caregiving responsibilities with. Post comments, photos or questions, use the calendar to easily track appointments to schedule caregiving.
WEBSITES
|
PODCASTS
- Real Talk With Real Caregivers by Caregiving.Com - Not losing yourself and still living your life as a caregiver.
- Happy Healthy Caregiver - Host and certified caregiving consultant Elizabeth Miller and her guests share their personal stories, knowledge and advice about how they incorporate caregiving into their lives and manage to stay healthy and happy.
- Self Care IRL by Ty Alexander - Self Care IRL creates a space for listeners to explore relationships, transitions and challenges while giving strategies for how to conquer them.
- Caregivers Out Loud - A space to connect, listen and learn with other caregivers. Insightful, authentic and heart-centered conversations with caregivers. Episode 1: Accessing Caregiver Support Networks.
BOOKS
ARTICLES
|
There are many wonderful agencies advocating for unpaid family caregivers!
|
CAREGIVER ADVOCACY RESOURCES
|
The National Alliance for Caregiving builds partnerships in research, advocacy, and innovation to make life better for family caregivers. Check out these advocacy initiatives:
- Expand Caregiver Access To Supports & Services
- Invest In Evidence Informed Caregiver Research
- Protect The Financial Security of Caregivers
- Include Caregivers As Vital Members Of The HHS System
- Enhance The Health & Wellness Of Caregivers
- Federal Caregiving Legislation
|
The Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
|
The Family Caregiver Alliance (FCA) is the lead agency in California's system of Caregiver Resource Centers. FCA provides support and help to family caregivers and champions their cause through education, services, research and advocacy. Services are specific to California, although information can be accessed nationally. Here are their advocacy tips for caregivers!
|
ADVOCATING FOR CAREGIVERS
|
Courage to Caregivers continually advocates for unpaid family caregivers being a valued member of the care team for those living with mental, chronic, and serious illnesses.
As we continue to advocate for caregivers, we presented to the University Hospitals Grand Psych Rounds in 2021.
Our 2022 Fireside Chat - Caregiver Essentials: The Role of the Caregiver on the Care Team highlighted how to navigate systems of care for our loved ones featuring Dr. Stacy Caldwell, MetroHealth Hospital, and Dr. John Hertzer, University Hospitals.
We also empower caregivers to advocate for THEMSELVES - self-care = self-advocacy! Check out some of our favorite self-care resources on our website:
|
The Rosalynn Carter Institute for Caregivers promotes the health, strength, and resilience of caregivers throughout the United States. Established in 1987 by former First Lady Rosalynn Carter, the Institute's priority is the family caregiver; those individuals who care for a relative, friend or loved one.
|
Across the country, AARP is working with governors, state legislators, and community partners to take commonsense steps to support America’s 40 million family caregivers — who help their older parents, spouses and other loved ones to live independently at home.
|
TOMORROW is the day! The 10th Annual Believe in CLE! Celebrate Cleveland the evening of Friday, September 1, 2023 with yoga and breathing meditation on the steps of The Rock and Roll Hall of Fame! We are thrilled to partner with Inner Bliss Yoga Studio for this event benefiting Courage to Caregivers. Experience the power of moving and breathing together at this famous Cleveland location! ALL levels of yoga practice are welcome - from novice to advanced! You may register here - space is limited. You may donate to Courage to Caregivers for your participation here.
|
Caregiver Essentials: Advocating for Your Loved One Every Step of the Way, September 28, 7:00pm ET. Join Jenny Woodworth, Director of Programs, in a virtual conversation with Joan Englund, Executive Director of Mental Health & Addiction Advocacy Coalition, and Katie Jenkins, MPA, CDCA, Executive Director of NAMI Greater Cleveland, regarding advocacy both on a large scale and a small scale. Do you have questions about how to best support your loved one during treatment? Or questions about policy regarding mental health and addiction? Then this is the Fireside Chat for you! Register here.
|
Create with Courage - a fundraising event to support caregivers on Sunday, November 5 from 1-4 p.m. at Holbrook Hollows park in Chagrin Falls! Come and experience the benefits of creative expression for mental health and wellness. There will be many activities and experiences to choose from and more details to come! Creativity inspired by nature - experience mindfulness, joy, awe and wonder!
|
COURAGE TO CAREGIVERS CARING FOR THE CAREGIVERS
4th ANNUAL VIRTUAL SUMMIT
Wednesday, November 1 -
Friday, November 3
For Unpaid Family Caregivers
and Professional Caregivers
(CEUs provided)
Workshops focused on: mindset, practice, and self-compassion.
|
We're thrilled to have Naaleh Cleveland as an official Community Alliance! Established in 2014, their mission is to strengthen the mental and emotional health and well-being of the Cleveland Jewish community and to remove the stigma associated with seeking professional help. No one should ever feel alone or view psychological treatment as a contradiction to their religious values. Mental health has long gone under-treated, leading to inferior outcomes. Naaleh has grown and evolved to provide the community with an on-site OHMAS-certified counseling clinic called Naaleh Counseling Solutions. The clinic serves both adults and children and accepts most insurance plans, including Medicaid. Naaleh also provides teen mentorship, a mental health referral hotline, education, support groups, and advocacy for the Jewish community’s needs as they arise. Naaleh has become the trusted first-line mental health resource for over 2,000 families in the community!
|
Did you know you can get PAID for your advocacy AND support Courage to Caregivers in the process (we get a referral benefit)? In order for companies and researchers to make the best products and services, they need to understand the patient and caregiver experience. Therefore, Savvy Cooperative was founded by patients to help amplify, protect, and value the patient voice. Savvy's insights platform connects patients and caregivers directly with healthcare innovators and ensures that participants are treated fairly and adequately compensated. To learn more and join their community, please use the Courage to Caregivers referral link OR email community@savvy.coop with questions and let them know Courage to Caregivers sent you!
|
September’s theme is TENACITY, and we will focus on persistence, realistic optimism, and coping mechanisms! As we continue on the journey of discovering our true selves, setting micro-goals will guide us. With micro-goals, it’s easier to take the next right step - as Chinese philosopher Lao Tzu said, “A journey of a thousand miles, begins with a single step.” Check out September's Micro-Challenges Calendar.
|
Courage to Caregivers Breathing Practice for September: Smiling Breath
As we support caregivers to make breathing and meditation a practice, we're pleased to share our Breathing Meditation Facilitator Cathy and her monthly breathing practice how-to videos. You can watch September's instructional video for Smiling Breath here. This breath is particularly helpful in alleviating depression. Remember to subscribe to our Monthly Breathing Practices playlist to stay updated each month. You can also subscribe to our Breathing Meditation playlist, where we upload our weekly breathing meditation recordings, and follow along on our Spotify Breathing Meditation playlist.
|
The mission of Courage to Caregivers is to provide hope. support and courage to caregivers and loved ones of those living with mental illness.
©2023 Courage to Caregivers, Inc.
|
|
