Family caregivers take a long arduous journey. I’m Beth Suereth, Family Caregiving Partner at Caregiving Pathways. I was years into caring for my father before I realized that the path I was going down had been well worn by others. I had been living crisis to crisis and trying to give my husband and children a normal life for a few days in between. I had no idea I was a family caregiver.
Once I discovered the norms of the caregiving progression and got past the guilt of looking past the end of caregiving, it instantly became more manageable in my mind. I had the perspective of knowing where I had started, where I was, and where I was going.
We take comfort from knowing we’re not alone, and with 53 million caregivers in America, I was definitely not alone. Knowing that people hit similar milestones and faced similar challenges made me feel part of something bigger — an entire culture — even though I’d participated in it for years without realizing it.
Eventually I thought to look online for family caregiver support. At first, I found absolutely nothing. Thankfully, that is slowly changing.
One of my dad’s maxims was “learn from the experience of others.” I would have learned from other family caregivers had I known they existed, or had there been a place to look for them. After I took stock of all I learned as a family caregiver, I realized that I should pay that learning forward, and let others learn from my experience. So I did. And I will continue to do so until I can’t anymore, because so many of us need the help so desperately. And because there’s still not enough awareness of what family caregivers are, all that they do, and the support they need in a crisis and over the long haul.
Sarah Todd, MD, MPH, and I are partners in increasing awareness and support of family caregivers. That includes helping family caregivers actively anticipate and manage end-of-life care. As an emergency medicine physician, Sarah has an invaluable perspective on that topic and can help people document their wishes for emergency and end-of-life care.
Together we provide all of the information I wish someone had given me when I first began caring for my dad. I would have anchored myself by understanding the journey and my place in it at any given time. And I would have sorted through the weight and emotions of end-of-life care beforehand rather than while it was happening.
Learning about caregiving and emergency and end-of-life care means anticipating and acting, rather than reacting emotionally and without time to think things through.
We’ve come to recognize that there are basically two options during caregiving…plan and prepare, or react and regret. We’re providing the planning and preparing to help family caregivers prevent the regret.
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