En español | When I was 60, I started ShareTheCaregiving, a nonprofit organization that aims to improve the quality of life for anyone who needs support and aims to reduce the stress, depressionisolation, and economic hardship of their caregivers. Becoming a caregiver is like being in a maze: You’re constantly trying to solve problems but you don’t know how to navigate the experience and you often put your own needs on the back burner. Since I started the organization, ShareTheCare groups have been documented in at least 48 states, two territories and 13 countries.
The problem I’m trying to solve
No one teaches us how to be a caregiver. People are thrust into this role when a crisis occurs — and they inevitably become physically and emotionally stressed and isolated. By the year 2030, there will be a significant shortage of caregivers for aging Boomers in the U.S. There will be fewer professional caregivers and fewer young people to take on the caregiving role, which will put additional pressure on family caregivers. Already, there’s a significant problem with caregiver burnout and isolation.
The moment that sparked my passion for this
Three caregiving experiences dramatically impacted my life. I was a family caregiver in 1984 when my mother, who was a widow in upstate New York, started having issues with severe asthma and osteoporosis. She went downhill very quickly, and I was going to see her four times a week. There was no support for caregivers at that time; caregivers were invisible. I did a very good job with my mother but I didn’t do a very good job for myself. That’s common with caregivers — they put themselves last.
The model for the organization was born in 1988 when a group of 12 women came together to care for our mutual friend Susan, a divorced working mom with two teens and terminal cancer. To make things manageable, we developed systems and forms so that no one had too much to do. After Susan’s death, a women we didn’t know but who knew Susan from a cancer care group called asking for help because she was going to have a bone marrow transplant. When my friend Cappy and I called a meeting to explain to this woman’s 20 friends how we worked together, we saw them begin to relax as they realized they could do this. That’s when Cappy and I realized we should document what we’d done so that others could follow it. We wrote the book Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, which was published in 1995. In 2002, Cappy was diagnosed with cancer and a group of us used the model to care for her. When she died 10 months later that was my turning point: I knew that this program needed my full attention to reach its potential so I eventually left my advertising career to launch the organization.
How my upbringing steered me in this direction
My entire life was pushing me this way. I developed compassion when I was little: My family moved to Frankfurt, Germany when I was five; this was a couple of years after World War II and I remember seeing people digging in garbage cans to get food. Seeing people who had nothing and were struggling to survive impacted me. I remember my parents gave our maid a box of food and coffee at Christmas; she was so grateful that she burst into tears. That really registered with me. After living in Germany for 11 years, we moved to Italy. I went to the Academy of Fine Arts in Milan for college. I had a life of constantly learning new things, adapting to new cultures and creating things. I had no interest in being a teacher or a nurse — that’s what my parents did — so I find it ironic that so many years later I’m teaching caregiving.
Advice to those who want to make a difference
If you know what you want to do, just get started and figure out how to do it. Besides having a vision, it’s critical to have persistence and passion. There are a billion roads and obstacles — it’s a matter of finding how to pursue it the way you want to. Ask for help and advice — but you must take care of yourself first.
Why my approach is unique
The organization focuses on educating people about the ShareTheCare model, which is unique because it has a philosophy about how to work together in a structured way and share responsibilities. It’s a group caregiving model with a step-by-step roadmap for creating a “caregiving family” to support someone facing a health or medical issue. With this approach, everyone shares in the workload, the joy of helping and the camaraderie of working this way. The commitment doesn’t have to be huge: You can pick the jobs you want to do, feel comfortable doing and are good at.
What’s next for ShareTheCaregiving
The main goal is to make this available to people everywhere because we have a national caregiving crisis. If everyone gave a couple of hours per week, we could change that in this country. I want to offer online courses for caregivers, introduce the model into patient-centered care in hospitals, and do more public speaking and teaching. Caregiving can be a life-changing experience that brings out the best in every person involved — I want to help make that happen.
“ShareTheCare brought together 40 family friends and friends of my son Kent who had muscular dystrophy and was wheelchair-bound. His football friends would come and take him out to lunch; others would take him to the movies or do art with him. It really gave Kent a boost and it was a great gift for my wife and me because we had come to an end with what we could think to do for him.”—Roger Zittel, 77, whose son passed away in 2015 at age 48