We Still Need a Seat at the Table

Too many panel discussions about caregiving issues don’t include family caregivers.

Over the past few months, I’ve attended panel discussions about caregiving issues. I’m still amazed at how few of these panels actually include a family caregiver.

During these conversations, I hear panelists express a call for family caregivers to be front and center in care delivery and the need for a family caregiver to have a seat at the table within the care delivery system.

The irony is that we don’t have a seat at the table during these panel discussions.

Because we’re not part of the panel, the discussions miss the mark. So often, panelists come from a system — the health care system, the long-term care system, the policy system, the research system. A researcher, policy analyst and hospital administration may gather to talk about our experiences. Because we’re not part of the panel, the panel discusses their perception of our experiences. In addition, the discussion focuses on our interactions within their systems.

The reality is that we interact within those systems once in awhile. Our caree may not qualify for long-term services through Medicaid. We may try to keep our carees out of the hospital, my priority with my parents. We may not be able to afford care so forgo it.

We’re in our homes, in our neighborhoods and in our family systems providing care. On most days, the health care system isn’t helping us.

Throughout my work, I’ve committed to ensuring the family caregiver voice is the loudest. When I owned and managed an online caregiving community for almost 24 years, family caregivers shared their expertise by writing articles and blog posts and by sharing their stories on podcasts and during video chats. When I organized and hosted four National Caregiving Conferences, family caregivers and former family caregivers presented workshops and led panel discussions. In order to blog or present, you had to have a personal caregiving experience. If you don’t have that experience, you just can’t get it.

Going forward, I hope all panel discussions about caregiving issues will include family caregivers. I hope the conversations will pivot to a focus on the meaningful systems in our lives — the workplace, the neighborhood, the family, the houses of worship, the retailers, the community services.

We visit your systems. When you take the time to visit our system, you certainly can talk about your insights. Until then, our voice needs to represent our experiences.

We may spend a few nights in the hospital with our carees every year. We spend every night at home worrying about them.

Image by JayMantri from Pixabay

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Update

• Last month, I wrote that we spend too much money on caregiving research which has yet to improve the caregiving experience. The New York Times science reporter offers a similar perspective.

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