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Tell Us: How Do You Keep a Life During a Life of Caregiving?

Our 2019 Family Caregivers of the Year, who met at this year’s conference: Darlene James, who cared for her mother, daughter and husband; Kara Guerriero, who cares for her brother; Susie Morrell, who cares for her mother who’s refusing hospice services; and Rachel Hiles, who cares for her grandmother.

Just about a month ago, we gathered for our Fourth Annual National Caregiving Conference. More than 200 family caregivers and former family caregivers from 29 states and three countries came together to share, support and celebrate.

For another kind of conference, the numbers would be considered average. But for us, those numbers speak to our tenacity. During a caregiving experience, it can be a challenge to get to the store much less travel across the country. We made it though. Sharon Hall, who cares for her husband, joined us even as her family manages another caregiving challenge — her son’s recent cancer diagnosis. Rachel Hiles, who cares for her grandmother, drove to our conference even though her mother died a week earlier. Jenn Chan, who cared for her grandmother, flew to Chicago from California despite being on crutches and recovering from an awful fall the week before.

The commitment to showing up for what’s important to them, like Sharon, Jenn and Rachel did, really inspires me. We could stay home with every good reason to remain in our house. The resilience to getting out and staying connected is really quite special.

When I first decided to host a National Caregiving Conference in 2016, I wondered if taking on the responsibilities of managing such an event would be wise while I help my parents. What if they had more significant declines and managing those declines made the work of hosting an event like this impossible?

I decided I couldn’t put the idea for the conference on hold just in case something happened to my parents. Something will happen to my parents, regardless of whether or not I commit to a project important to me, like the conference. If I hold off, just in case, I end up putting my life on hold.

The temptation to put our goals and opportunities on the back burner can be so intense during caregiving. The trap of staying put, just in case something happens, does lure us into believing we must stay ready while saying “no” to our own opportunities. The importance of  being present to manage the crisis is an understandable priority for us. Sometimes, though, we spend more time waiting for the crisis — in the house, on the couch — than actually managing it when one does happen. As hard as it seems to do, it’s important we keep living, even while we wait.

I’d love to hear how you keep a life during a life of caregiving. How do you show up for what’s important to you? Please tell us your experiences in our comments section, below.

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About Denise

I began working with family caregivers in 1990 and launched CareGiving.com in 1996 to help and support them. Through my blog, I share words of comfort and offer coping strategies and tips. I also write opinion pieces about recent research, community programs and media coverage of caregiving issues. I've written several caregiving books, including "The Caregiving Years, Six Stages to a Meaningful Journey," "Take Comfort, Reflections of Hope for Caregivers" and "After Caregiving Ends, A Guide to Beginning Again." You can purchase my books and schedule a coaching call with me in our store.

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