Caregiver Nation: Lessons from an Amazing Community

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” Lao Tzu

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 two years ago, I believed I understood the role of the caregiver. I was mistaken.

Here in our nation there are over 40 million husbands, wives, sons, daughters, brothers and sisters who have stepped up, and stepped into, the role of caregiver. They are often untrained, often 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 community, 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 who are far more complex. And while the experience has been humbling, I am grateful to have learned so much from this 2500-member community of amazing caregivers.

Here are some of the most remarkable things this community has taught me.

Empathy > understanding.

Only a caregiver truly understands the caregiving experience. The Caregiver Nation community was created to provide caregivers with a safe place to connect, share, vent, learn and empower.  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. 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.

Sleep is elusive, but caregivers need more of it

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 hour of 9-10 pm. Whether evenings are the time of day when their loved one struggles most – when a UTI flares up or their mood shifts – or it’s 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 to take a break, maintain their own health and ask for help. As a mom of two daughters, the lack of sleep I got as a new mom still haunts me.  I was an absolute zombie (and in the spirit of transparency, had no idea what I was doing half the time). Even when my little ones would sleep, I would lay awake to make sure I was available to tend to all their needs.  I got the point where I could barely function, and finally and begrudgingly, asked for help. Motherhood was (and is) still hard, but with a good night’s rest and the support of others it is far more manageable.

My wish for Caregiver Nation is sleep. Lots of it.

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. 

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.

Conversely, to learn that so many caregivers are tackling this role without any support leaves me speechless and frankly, heartsick. The notion that a caregiver, essentially the poster child of selflessness, could be abandoned by family, friends and neighbors in a time where they require support is disgusting.

But one thing does bring me solace: that all of Caregiver Nation now has each other. 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. 

Thank you, Caregiver Nation, for all that you have taught me and my Seniorlink colleagues, for showing us the depth of unconditional love and for allowing us to be part of your journey. God Bless.