Caregiver Nation: Lessons From An Amazing Community One Year Later
Caregiving is not for the faint of heart.
Growing up, it was understood that family cares for family. My mother cared for her mother in our home during my childhood. I recall clearly the hospital bed in the living room, the sights, sounds and smells. My siblings and I had a “front row” seat to the emotions and impacts of caregiving – love, compassion, exhaustion and most noticeably, frustration. My mother was completely immersed in her role as caregiver, all the while managing the roles of wife, mom and real estate agent. Seeing her struggle left a stamp on me for life.
That’s why, when I started at Seniorlink three years ago, I believed I understood the role of the caregiver. I was mistaken.
Here in our nation there are over 44 million husbands, wives, sons, daughters, brothers and sisters who have stepped up to, and stepped into, the role of caregiver. They are untrained, unpaid and greatly undervalued. While their duties are complex, their motivation is simple: love – the unconditional kind.
For me, it took joining this company and specifically, working with my colleagues to create the Caregiver Nation, an online gathering place for caregivers, to realize my perceived “front row” seat to caregiving was anything but representative. Millions of caregivers perform duties far beyond what my mother did, for loved ones whose conditions and behaviors are far more complex. And while the experience has been humbling, I am grateful to have learned so much from this community this past year.
The Caregiver Nation community was created last November, as a part of Seniorlink’s annual salute to family caregivers during National Family Caregiver month. The community provides caregivers with an outlet to connect, commiserate, share tips, resources and support each other along their caregiving journey. Simply put, Caregiver Nation is a safe place for caregivers to connect without judgement.
In a year, the community has grown to over 3,100+ active members. Stories have been shared and friendships have formed. Most inspiring is the overwhelming support community members have for each other.
“I’ve been on this journey as a caregiver 24/7 for the last 5 years. I’m amazed at the changes that have occurred in me physically and emotionally. It’s been such a rollercoaster. I’ve found that most of the things that I experience and feel, everyone else on this site is experiencing also. I just want to say that my faith in God and the folks on this site strengthen me and lift me up everyday. God bless you guys” -Caregiver Nation Community Member
After watching community, members interact this past year, the team and I have taken away several key insights as to how this community supports them through surveys and social interaction. Some of my favorite takeaways have been the following.
Empathy > understanding
Caregivers need each other. They are on a journey that is complex and unpredictable, it can only be fully grasped by others on a similar journey. 89% of members would be sad if the community did not exist. Caregiver Nation isn’t just a Facebook page. It’s “home” to many members.
The exchanges in this community have validated that, and for us to have helped facilitate these discussions in some small way has been a career highlight.
Caregivers Sacrifice Their Own Healthcare Needs
As my colleagues and I monitor the community page, it is clear to see that caregivers do not sleep much. They are most active during the hours from 9-11 pm.: likely their first chance of the day to catch their breath. Evenings and early mornings are when they seek connection to each other.
The irony, however, is caregivers need sleep. They need a break…they need to find time to take care of themselves, too.
When asked 75% of members say their health has improved after being a member in the community. This humbled me greatly. Knowing how mentally exhausting caregiving can be, I’m grateful members not only find the friendships they need, but that they’re wellbeing has been positively affected by these friendships as well.
The Power of Community
Every caregiver needs a “village”: the friends, family members and neighbors that can alleviate some of the caregiving load. Someone who can help cook, clean or cover the overnight shift so that you can get in that much-needed nap, run, or haircut.
When asked, 98% of members would recommend Caregiver Nation to a fellow caregiver. This is huge. When you have a support system – you have everything.
As I read the posts in caregiver nation, it warms my heart that many members do have this village available to them. And some have the means to extend their village to include paid services and supports.
This community has become a village to many caregivers and there is tremendous power in that connection.
It is with the utmost of respect and gratitude I salute caregiver nation – the inspirational men and women that comprise the group and commit to caring for loved ones and now, each other.
It’s time we all take time to recognize family caregivers and appreciate the tremendous value of these remarkable folks. #thankacaregiver
Each quarter, Seniorlink caregiving experts Saran Craig and Laurie Herndon join the community in a Facebook Live session we call Ask the Experts. They answer questions from members of Caregiving Nation across the nation in real time.
Session topics are prompted by members in the weeks leading up to the event through polling as well as in real-time during the broadcast. Topics range from self-care questions to Alzheimer’s and disease progression.
In total, the Facebook Live events have amassed more than 1300 views from community members.
If this sounds like something you’d like to join, the next Ask the Experts event is being held today – join Caregiver Nation and tune in from 12:30-1pm EST to get advice and answers as well as a community filled with like-minded people.