The Ideas That Created the Work

We’re so looking forward to our next special Care and Share event, Our Big Ideas, which will take place October 5-9. We love Big Ideas, which have inspired much of our work.

I thought I'd share how my big ideas became my work to inspire you to submit a proposal share your big idea during our event. Deadline to submit your proposal to present is July 25.

Your big idea can become your big work. My ideas include:

We can stage the experience of caregiving.

In 1997, I wondered if the caregiving experience could be staged like a disease process. I then spent a year putting together a concept that became The Caregiving Years, Six Stages to a Meaningful Journey. I've refined the concept regularly over the past 23 years to ensure the concept reflects today’s caregiving reality. The concept now forms the foundation for the Specialist, Facilitator, Consultant and Educator training programs.

Family caregivers are the experts.

They blog. I launched CareGiving.com in 1996 to reflect the voice of the family caregiver. (I sold CareGiving.com in March 2020 to focus solely on my training programs.) The site became the first website to feature the blogs of family caregivers. Visitors regularly shared with me that those blog posts provided them comfort in the middle of the night, on tough days and during moments of doubt. When family caregivers needed to connect to support, they visited CareGiving.com to feel understood and accepted.

They present. At our four National Caregiving Conferences, our presenters were family caregivers and former family caregivers. Every session saw a family caregiver or former family caregiver in front of the room leading a workshop. It was powerful, especially considering many family caregivers fight to be heard in the health care system. (Rather than a National Caregiving Conference this year, look for another special virtual event this November. Stay tuned for details.)

They inspire changes. Lisa McEvoy, one of our Certified Caregiving Consultants and Educators, organized a group of family caregivers in New Zealand to complete our Certified Caregiving Advocate training. They will work to improve opportunities for persons with disabilities and to support parents of children with special needs.

They lead support groups. Lisa and three members of the New Zealand group recently completed training to become Certified Caregiving Facilitators to lead support groups in their communities.

Caregiving stress is an overlooked epidemic in our communities.

In 2015, I realized that caregiving stress is an overlooked epidemic in our communities. I spent 2015 raising awareness of caregiving stress and petitioning the Centers for Disease Control and Prevention to track family caregiver stress.

After the campaign to raise awareness with the CDC didn’t create the result I wanted, I decided to track family caregiver stress myself. To date, more than 1,150 family caregivers have completed the stress survey, rating their stress at 4.14 on a scale of 1 to 5, with 5 being the most stressed.

My work around caregiving stress led me to another insight: Compassion fatigue is just an umbrella term to describe our weariness. To heal, we must get specific. This perspective on caregiving fatigues is now one of my Caregiving Master Classes.

Family caregivers can turn the invaluable knowledge base and wisdom gained into a business that helps others.

They become Certified Caregiving Consultants?. Toni Gitles, who became a CCC in January 2018, launched a Dementia Dining Initiative in Orlando this year. Dannelle LeBlanc received a grant to deliver our workshop, The Caregiving Years, to family caregivers throughout North Texas.

They also help family caregivers with their Family Emergency Plans and become their Family Support Team during and after a caree’s hospitalization. We’re working to change how family caregivers receive support during hospitalizations and throughout their experience.

Through research, I realized that family caregivers can keep their careers as long as they have the right support.

The right support hinges on interactions with the caregiving employee’s manager. When employees talk about their caregiving experience, they often share situations that are painful and share experiences of intense suffering for themselves and their carees. When managers can comfortably talk about situations that bring up difficult emotions, then the manager and employee can reach consensus about how the employee can receive support while the business continues. Our training for managers, The Manager’s Toolbox for Managing a Complex Workplace, teaches how to have those difficult conversations.

Support groups can be personalized to provide a comforting experience for family caregivers and former family caregivers.

Our Care and Share Moveable Support Groups encourage family caregivers to form their own support groups with their family members and friends. Our Certified Caregiving Consultants facilitate the conversation to ensure a helpful and empowering experience for all.

Former family caregivers can be the best instructors for family caregivers.

They become instructors in our Certified Family Care Manager training program. Our instructors all have a personal caregiving experience which informs the course they create. They use what they learn to teach others.

Family caregivers are professionals.

Family caregivers deserve to receive the support and training other professionals receive. Our courses offered through the Certified Family Care Manager program are just the start.

Some future big ideas include:

• Creating opportunities for family caregivers to be reimbursed and receive benefits.
• Developing funding opportunities for former family caregivers who launch a small business to help current family caregivers.
• Training a Fall Squad, a group of young adults who can help homebound individuals when they fall at home.

You also can learn about my ideas by watching the archive of my presentation, How Will We Care?

Visit Care and Share: Our Big Ideas to learn more about presenting and attending. Your big ideas can change the world, even the world of one.