Denise has been supporting family caregivers since 1990. She has also been a family caregiver for her dad and mom, who recently passed away. We had the chance to learn more about Denise, her caregiving experience and the resources she’s developed for caregivers. Read her story below.
Who do/did you care for?
I began helping my dad, who is 91, in 2004 after his bladder cancer diagnosis. After his cancer spread, he had surgery to remove his bladder and a kidney in 2015. He also has skin cancer on his head which requires regular monitoring and wound care at times. My mom became seriously ill after an internal bleed in 2015 and never fully recovered. She was diagnosed with Parkinson’s in September 2021. We cared for her in her home until she died a year to the date after my brother, who died suddenly in August 2021. After my mom’s death, we moved my dad to independent living in a senior care community. My sister and I continue to provide his ostomy care and ensure he has what he needs.
Share your story – how you started and how you got to where you are today. (You can include as little or as much detail as you’d like.)
I began supporting family caregivers in 1990. I worked for a non-profit organization which provided respites services to family caregivers in a rural county in New Jersey. I loved visiting the family caregivers in their homes and listening to their stories. As I writer, I found the caregiving stories to be compelling and riveting. I continued to work with family caregivers in various settings and decided in 1995 to start a business to help them. I launched one of first online caregiving communities in 1996 and managed that community until selling it in 2020 to Ohio’s Hospice. I now focus on developing and leading training programs for family caregivers and former family caregivers. I feel honored to have met so many family caregivers and am committed to creating solutions to improve the caregiving experience.
What do you know now about caregiving that you wish you knew when you first started?
Because I began supporting family caregivers through my work in 1990, I had insights into what the experience could be. I have been intentional about listening to family caregivers on a daily basis since I been serving them. I believe every family caregiver deserves a good listener and have tried to be that for as many family caregivers as possible. Because I spent time listening, I understood the intensity of the caregiving emotions and how draining they could be. I also understood that a caregiving experience can cause significant strain within the family, which is what happened in my family. Before I began caring for my parents, I did worry whether or not I would be kind during my caregiving experience. I have learned that I must be kind to myself first. I do wish I knew the importance of being kind to myself and giving myself the permission to define what being kind to myself means. I have learned that my definition of being kind to myself can change from minute to minute and day to day.
As a caregiver, what resources would you like to see made available to all caregivers?
I wish every family caregiver could connect to a good listener. I also wish every family caregiver received calls (or texts) of support during a caregiving crisis and then to talk about the crisis after it ends. I also would love providers to ask us about our experiences using their services throughout the service experience. For instance, after a service like hospice begins, I would love to get a text message that asks me how I’m feeling now that the service has begun. What are my worries? What questions do I have? What problems am I encountering with the service? What support do I need? Technology can be used in such thoughtful ways for us.
What do you do for self-care?
I write, swim, follow politics, watch sports and enjoy time with my friends. I also find my work to be a form of self-care. I love the work I do. Staying connecting to that work gives me a break from my worries and allows me opportunities to create and innovate.
Tell us about the resources you’ve developed for caregivers.
We have a community called CaringOurWay.com that offers both free and paid courses for family caregivers and former family caregivers. Free courses include The Daily Healing Plan, The Daily Recovery Plan and Beginning Again After Caregiving Ends. Family caregivers also can connect with Certified Caregiving Consultants, who can offer ideas, suggestions and resources. Certified Caregiving Consultants have their own personal caregiving experiences and have completed our specialized training to coach and consult with family caregivers.
When family caregivers join Caring Our Way, they also can enroll in our Certified Family Care Manager program. The 11-course training program provides a professional designation to the family caregiver experience. As Certified Family Care Managers, individuals now have professional experience to include on their resumes, especially if a caregiving experience created a gap in the work history. The training empowers family caregivers with leadership skills, practical tools and stress management techniques. Family caregivers from the United States, Canada, New Zealand and Slovenia have participated in our program. The cost of the program is $20.
Because I believe opportunities heal, I’ve created events and training programs that transform a personal caregiving experience. Every family caregiver has insights and stories that can make compelling presentations. We invite family caregivers to present about their experiences during our virtual event, The Caring Conference, which takes place every spring and fall.
Every family caregiver has an invaluable knowledge base that can help another family caregiver. The training programs complement that knowledge base so family caregivers and former family caregivers can become support group leaders, caregiving coaches and small business owners. Our program grads deliver keynote presentations, work with individual clients and are hired as social media influencers by brands. We’ve got a talent pool of caregiving experts that organizations can hire when they need writers, advisers, presenters and staff.
We also have a program that helps individuals become Advocates to become a catalyst for change to improve the caregiving experience.
What else would you like to share with fellow caregivers?
I’ve been collecting insights about family caregiving stress since 2015 and would love to learn about yours! The experiences you share through our surveys helps our training program participants better meet the needs and stresses of family caregivers and former family caregivers. If you’ve got a few moments, I would love for you to share your experiences in our surveys: https://www.careyearsacademy.com/survey/.Share this post: