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30 Days of Caregiving

November 1, 2011

By Kathy Kelly, Executive Director, Family Caregiver Alliance

In honor of National Family Caregiver Month in November, we decided to feature a different perspective each day for the entire month this year. 30 days, 30 stories. Some of the topics are practical with a focus on care, some are about policy and advocacy and some are personal experiences. We will ask our colleagues around the country to tell us about their latest programs of note to caregiving. And we want to end on November 30th with stories and pictures to bring us back to focus on families.

Day one, first story: So what does Family Caregiver Alliance know after 30 years supporting family caregivers? While it might be tempting to give all the statistics current and future, I will resist. Caregiving is not about the average caregiver, it is a mosaic of narratives threading our country. It is a daughter, struggling to balance work, kids and care for her mom. It is a young wife providing care to her husband forever changed by combat in Iraq. It is neighbors picking up groceries, giving a lift to a medical appointment or stopping in for a cup of coffee for someone who needs some help and connection. It is a husband caring for his wife as she fades away from Alzheimer’s disease.

Everyone it seems, has a story. But at the heart of the story is a person and a family and how communities come together to creatively meet the challenge of care. Care is a paradox: independence within an interdependent web of connections that means a person needing help can be in and can be a part the community. We may need to confront some common notions of “aging in place” too – maybe reexamine the anchor of the cherished family home, how we view intergenerational living arrangements and acknowledge isolation as a major threat to our health. And we need to be proactive – too often we see families reacting to a crisis when there are usually less options to consider because the conversation was too hard or like for most of us, denial is easier than deciding a course of action.

Because we see families –by birth or by choice – we see caregiving as a family issue. That is, it is never just one narrative – it is a reciprocal relationship between those needing assistance and those providing that assistance. The needs across the family require validation and respect. But too often, the focus is only on the family member who needs assistance while those who support that individual are ignored or worse, considered nuisances because they ask too many questions of professionals.

But we have also learned that not all families have the willingness or the capacity to take on caregiving for a host of reasons. And not all individuals needing assistance are safe within their families. Complex issues, complex families and no real simple solutions.

So here is what we have learned: caregiving is a family issue and a healthy community is one that recognizes that care demands may well span younger and older members of a family. And since every family has a story of caregiving or will have very soon, communities need to support caregivers. We need to talk about caregiving and continue to talk about caregiving until it becomes a normalized activity in our communities.

What we do know from the statistics is that families, friends and communities will be facing a greater challenge in the future as the need for care increases. We need to act now with planning in our personal lives and with raising the public awareness in our communities and nationally about the importance of informal caregivers and the need to recognize and support their efforts.

At the end of the November, we plan to feature stories and pictures contributed to us by family caregivers about their experiences. If you are a family caregiver and would like to contribute a story about your experience, please send your story (and pictures if you have them and would like to share) to us at: scoffey@caregiver.org. Please note that we will publish these stories and pictures on our Facebook page and our blog. If possible, please keep your story to 1,000 words or less.

Welcome and please share in the conversation- either through commenting on this blog or on FCA’s facebook page.