Welcome to Part Two of our interview with CareGiving.com’s creator and founder, Denise Brown. In Part One of our interview, we learned how Denise went from being a writer to launching one of the first online caregiving support communities, which has been in existence since the ‘90’s.
In Part Two, Denise talks about how CareGiving.com has been her lifeline for support while managing the needs of her own aging parents, her thoughts on how to best promote and broaden partnerships between healthcare providers and family caregivers and the upcoming Second Annual National Caregiving Conference.
As you’ve gone through the process of building CareGiving.com, you’ve watched your parents’ age. Do you feel like everything you prepare others for has prepared you?
I don’t think you can be prepared for what aging looks like for someone else. There were definitely surprises, but I knew what was coming and I had my support system in place. I used my website. I’d go to my ‘Chats’. I blogged about all that was going on. I used Twitter. I had it all there for me and knew where to go. That was the key. It wasn’t that I knew exactly what to do with my parents because what happened to them is not what I thought would happen, but what I did know is where to find support for me. I knew on CareGiving.com I could make sure I wasn’t alone, talk honestly about what was going on and receive support.
From your perspective, what are the most important changes that need to occur in healthcare to promote and broaden partnerships between the treating providers and family caregivers?
This is what I think, which is the next level of training that I’ve created. The impact of the disease process on the family caregiver is misunderstood. The patient education currently available is all, understandably so, about patient care. We ‘get’ patient care. My mom and I learned how to manage my dad’s ostomy bag, but what we didn’t know how to manage was the emotional impact it would have on us and my dad. I really believe we have to educate the healthcare professionals on the emotional impact of the disease process. There needs to be both treatment plan for both the caree and the family caregiver.
The family caregiver’s treatment plan needs to be about the tasks and skills required to care for their caree and how to get the emotional support that’s needed. Right now, this doesn’t happen. You get a diagnosis and your told the follow up for the ‘patient’, but if you’re a family caregiver, you’re left waving in the wind. You have to go home and figure it out.
All of this is the basic premise of my third training program that’s available to any one who’s gone through the first two. The training is about ‘us’ as family caregivers educating healthcare professionals about the impact of caring. The purpose is to equip the healthcare professional with the ability to identify when ‘enough is enough’ for the caregiver and how to best support him or her when they’re trying to be their best during the worst time of their life. I strongly believe healthcare professionals need to have some sort of training – whether it’s mine or someone else’s – if they truly want to provide quality care to their patients. Family caregivers are a huge part of the overall care quality and cost containment puzzle and healthcare professionals need to understand the family caregiver’s experience.Tell me about the National Caregiving Conference. What motivated you
to coordinate such a huge undertaking? What did you learn from last year’s event and what are you looking forward to this year?
I really wanted to have a conference that brought caregivers together to share their experience, strength and hope and have an opportunity to learn from each other instead of the experts telling us what it’s like. It was interesting to see the number of professionals who’ve been family caregivers participate and volunteer to do presentations along with non-professionals, which gave us the opportunity to offer continuing education.
Last year (2016) was our first conference. I tried to do a conference two or three times before the 2016 conference and each time I tried it never took off so it really wasn’t the right time. For whatever reason, last year I saw a lot of conferences happening at the local level and I thought, ‘There are enough conferences happening locally that there’s a need for something nationally – so, let’s just do it.’ My intention was to make it an inclusive event. I reached out to as many organizations that serve family caregivers that I could and invited them to be a media partner and promote the conference in exchange for name recognition. This was not about CareGiving.com or me; it was an opportunity for family caregivers, former family caregivers and anyone in this space to get together. That’s really what I tried to create.
One of the things I’m always trying to do is get diversity in terms of the stories and types of stories we have. We have a good representation of those caring for parents and spouses. This year we’re working to get more representation of those caring for children. Diversity is such a an important part of caregiving – you want to connect to a person in the caregiving role with a similar lifestyle. Whatever life you live, I hope when you come to the conference you connect with someone who lives a life that’s similar or understands the impact of caregiving on you and your life.
Last year was a tremendous learning opportunity. I didn’t realize the sense of community that would develop during the conference. Now, the focus is on what the community does together at the conference. We’re going to have entertainment in the evening on Friday night and many opportunities for people to connect – catch up, talk, share. I’d like for people to leave the conference having connected with someone and having learned something. I’m thrilled that we’re doing another conference this year! The theme is “Our Boldest Hours: Before. During. After” and we’d love to have as many people join us who want to. If cost and/or finding respite care is an issue – please visit CareGiving.com. We have a variety of opportunities for support. Also, if you can’t join us – we’ll be live streaming the entire conference.
Thanks, Denise! You are an inspiration to us all! Daughters, if there’s any way you can make the 2nd Annual National Caregiving Conference in Chicago this fall – you definitely need to. There’s an amazing community waiting to meet you.