"Stress can go from 1-5 on any given day. It depends on how well I've grounded myself before I'm with my caree and the surprise state my caree is in when I arrive.” ~ a family caregiver

"There are not enough resources in the community that actually help to make a difference.” ~ a family caregiver

“Too many pulls in very different directions.” ~ a family caregiver

(Please note: Please do not donate to change.org if you receive a donation request unless you would like change.org to receive your donation. We are only collecting support through signatures and are not soliciting donations.)

More than 53 million individuals care for a family member or friend. These family caregivers rely on their own initiative, advocacy and determination to find the help and support they need. The pressure to provide care for a family member with a chronic illness, disease or disability leads family caregivers to experience intense stress and worry.

According to The Caregiving Years Training Academy, family caregivers rate their stress as 4.13 on a scale of 1 to 5, with 5 being the most stressed. The stress is chronic as a family member's disease process can be unpredictable and insidious. The family caregiver also experiences stress in trying to maintain their own lives -- keep their career on track, remain connected to their important relationships and stay involved in interest and hobbies they love. A caregiving experience requires commitment, dedication and perseverance every day over a period of years and, sometimes, decades.

Our ACT Campaign recommends a different way to use existing funds and offers ideas on how to better support family caregivers and their carees.

Act to ensure research for tomorrow includes funding to support today’s family caregivers.

• We believe federally-funded research into the caregiving experience needs to include a budget for family caregivers who participate in the study that’s equivalent to the researchers’ salaries. Family caregivers who share their insights and expertise in federally-funded research studies must be reimbursed for their participation. (I recently wrote about two research studies that received funding totaling more than $5 million.)
• We also believe that federally-funded research into treatments and cures must include a budget to support family caregivers currently impacted by the disease. Support includes training, reimbursement to family caregivers for the care they provide and respite stipends so the family caregiver can take regular breaks. (A recent article in The New York Times highlights the current mental health crisis which science has yet to solve.) 

Create individualized training, support and respite programs so family caregivers stay informed, supported and resilient.

• We believe family caregivers can create the best kind of respite program for themselves. With a respite stipend, family caregivers can hire help, invest in their skills and personal development or vacation with their caree. With a budget in hand, family caregivers can make and take the best break for their situation.
• Expand home modifications covered through Medicaid waiver programs to include home beautification for the family caregiver. Caregiving supplies and equipment can take over the home. Family caregivers need a space in their home they can call their own so they can get breaks, enjoy solitude and connect to what they love. 
• Add respite grants to Palliative Care programs. While no funding exists for this, a wonderful research project could send money to family caregivers whose caree receives palliative care. The researchers could track how the family caregivers spend money to create their own break and how that regular break impacts quality of life for both the family caregiver and the caree.
• Any Hospital at Home program, which transfers care to the low-cost model of home, must include training and support for the family caregiver, reimbursement for home modifications, and Family Emergency Planning sessions so that family caregivers have plans in place to manage the next crisis. These family caregivers also must receive a respite stipend to use for a well-deserved break. 
• Family caregivers who receive reimbursement through their caree's Medicaid waiver programs (also see Money Follows the Person) often do not receive training, support or help planning in case of family emergencies. These family caregivers deserve annual training, monthly virtual support programs and annual Family Emergency Planning sessions. These family caregivers also need to receive a two-week paid break and an annual budget to create their own flexible respite program so they can get a break. In addition, these family caregivers can receive grants for additional training to help them return to the workforce or start a small business after their caregiving experience ends.

Transform our communities so family caregivers and carees have easy access to vote, to worship, to work and to socialize. In addition, we need to ensure family caregivers always are a part of the caree’s care team, including during a caree’s hospitalizations and when a caree resides in a facility.

• When every library has a Caregiving Department, we can reach and support family caregivers and their carees in our communities. The library’s Caregiving Department reflects their community’s culture and unique needs while providing a space to socialize and support. In addition, the Caregiving Department can offer annual Family Emergency Planning Sessions to all residents and build a database of family caregivers in the community. When there’s an emergency, the library staff can share updates and important information with family caregivers in the community. (We’re working with a library to develop a program; please let us know if our comments section if you would like to create a program with your local library.)
• Pass HR 2114, the Essential Caregivers Act, and include access for family caregivers during their caree’s hospitalization. 

Transparency so all family caregivers are empowered consumers of services and programs.

• Family caregivers often receive confusing information and then must make a decision. We believe any service provider must be transparent about the costs and services so family caregivers can make sound decisions. For instance, placement services market themselves as free to families searching for a facility for a family member. Unfortunately, when families reach out to placement services, they become a "lead" that services may fight to own. Sometimes, a simple google search and a click on a link can convert a family searching for facilities into a "lead." These placement services receive reimbursement from facilities for placement. The reimbursement typically is equivalent to one month's rent, which can begin at $4,000. To offset the cost of these placement services, the facility may charge a "community fee" in addition to monthly rent and raise the cost of care for all residents. Placements services must be a transparent service model so all families understand the true cost of using these services.

We’d love to learn more about your experiences:

• Tell us about the financial impact of your caregiving experience.
• Tell us about your caregiving stress.
• Tell us about your compassion fatigue.

Connect with us:

• Facebook
• LinkedIn
• YouTube

Follow our hashtag: #weACT4CARE

Thank you so much for supporting our recommendations with your support! Your support with your signature makes a difference!

(Want to help? Please include your interest in joining our efforts in your comment after signing our petition.)

Campaign to Act Committee

• Denise Brown, family caregiver to her parents
• Christina Keys, family caregiver to her mom
• Cathy Sikorski, family caregiver to eight family members over a period of 30 years
• Kara Ward, family caregiver to her grandmother and former family caregiver to her mom