Caregiving occurs across all ages. I have known seventy year old people caring for their centenarian parents, and ten-year-olds caring for their seventy-year-old grandparents; Baby Boomers caring for their young adult children, and young adults caring for Boomers; and plenty of people simultaneously caring for young children, mid-life adults and family elders.
Clearly, people of all ages, from birth to death, need and receive care from others. And people of all ages, excepting the youngest children, are involved in caring for others. Caring for our family and friends is a fundamental human activity, not an “older people” issue.
In Santa Barbara, one of our collaborators is Promotores, a local volunteer organization. Through their participation in Atlas of Caregiving’s CareMap Workshops, they opened up to each other about their own, personal caregiving situations. In doing so, they discovered how much they could learn from each other’s experiences, and the value of emotional support from others in their own communities. This has led to caregiving becoming a part of everyday conversation. They tell us that the impact of this peer-to-peer support has been transformational in their lives.
What one thing would we like to see change? That this would become universal. That talking with each other about family caregiving would become normal, unremarkable. That we would share our joys and tears, our inventiveness and frustrations, as we do with so many other spheres of life.
Caregiving is such a commonplace activity, and yet today we all do it in isolation, behind walls of “this is my unique challenge… no one else would want to hear about it,” and so miss out on the opportunity to learn from each other and to provide emotional support from each other. Uncovering community wisdom and empathy would make a profound difference.
Last summer we worked with a small group of caregivers, who were each already deeply engaged in their caregiving roles. We showed them methods, each relatively easy to do, for examining their own lives—gathering data about what they did, their emotions, their sleep, etc., and how to—and then we jointly discussed what meaning we might find in the data.
They learned so much about themselves and their care recipients that they found worthwhile, both practically and emotionally. I’m optimistic because we have shown that, quite simply, there is great scope for progress.
Even the little we have been able to do so far has made a significant impact on people’s lives, and has been positively received by everyone we have worked with. The potential for dramatic learning and progress is enormous.
That current conversation about family caregiving is often too narrowly focused, such as on “older people,” or on people with some particular disease. Funding agencies, research grants, philanthropists, government programs, even regular people, are still trapped in this mindset. But families do not enjoy the luxury of living lives with only one challenge. We have to face whatever life throws our way—children, partners, and parents, friends who need our care, in addition to caring for ourselves.
As long as we pretend that our lives are simple, as long as we promote simple (but ineffective) solutions because dealing with actual complexity is “too hard,” as long was we do not open our eyes to the way the world really is, chances for progress are severely limited.
I have been focused on family caregiving for roughly the past dozen years. Before that my work was in science and technology—NASA, Apple, etc.—always exploring very early stage innovation. Such work involved both trying to discover practical uses for technological breakthroughs and deep study of human behavior (to identify major but unrecognized needs).
At one point, that work led to me to look into what we, people, do to take care of ourselves and our families, the challenges we face in doing so, and then how new products or services could address such needs. I came to realize that I, and the people I knew in the worlds of technology, design, and anthropology, had very different perspectives on what families were doing and what help they needed, than what I was hearing from healthcare professionals.
This includes the perspectives I shared earlier. So, we started doing our own research and developing our own ideas, while also engaging with others with more traditional backgrounds (in social work and healthcare). Eventually, this led to setting up Atlas of Caregiving.