Care–Informal Style

2019 March 7

No one says it out loud—but it’s always there.  If you are in a relationship with someone, and your existing relationship is the reason you are a caregiver for a parent, child, spouse, sibling, etc., your kind of care is considered “informal.” Formal caregiving, like a nurse or doctor, presupposes no prior relationship. Informal caregiving always presupposes a pre-existing and ongoing relationship and that’s when everything changes . . .

You are never only a caregiver.

Informal caregiving means you are caring for someone because of a prior relationship that was once so clear.  You were once only a spouse. You were once only a son.  You were once only a parent. And then you add something else to the mix—caregiving—that renders your relationship distinctly different. As Donna Thomson and I talk about in our upcoming book—“The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver,” this evolution is what makes caregiving so disorienting because care always changes your relationships.

Informal care is what happens when the parts of our existing relationship that we hold to be sacred are trespassed by the care role.  Informal care requires us to rewrite our relationships in ways we might never choose but can’t ignore.

Our care isn’t formal and objective, but overwhelmingly personal, because this kind of care isn’t born from expertise but from ongoing relationships. It is our love for another that makes the informal caregiver relationship possible.

Yet, informal caregiver relationships exist without clear rules and guidelines. There are no standardized protocols for these kinds of relationships.  Rules make a lot of sense in the public sphere. They can be codified in advance because they are widely understood. These rules “work” because of mutual acceptance of what they mean and how they should be respected. For example, when approaching a stop sign, we don’t think about the merit of stopping, or whether it’s good to stop. We simply stop. Habits nestle deep within such rules and clarify our everyday lives so we don’t have to think every time we approach a stop sign.  We just react because we know that’s what is expected of us and it’s what we expect of others.

But when informal care primarily happens in the home—in the private spaces of our lives—something different unfolds.  Informal care is similar to what happens when people approach a stop sign within a block of where they live. The stop sign is still a stop sign, but it’s not considered as real as a stop sign that’s in an unfamiliar place, far away from where we live. This stop sign, the one in our neighborhood, is different.  We see the stop sign, but because we’ve seen it hundreds of times before and are so accustomed to our surroundings, familiarity transforms that universal rule into a mere suggestion, not a requirement.

Because of the familiarity of your ongoing relational status that always accompanies your care role, you and your caregiver voice are more likely to be considered “less real” than care provided in public health settings.  This is the ongoing paradox of the caregiver role.

We know our care will be differently perceived and received by those closest to us, but we also know that our care is more dynamic, multi-layered, and tension-filled than possibly any other relationship we might experience.

Informal care doesn’t happen apart from our lived experiences, it happens within a deeply overlapping network of relationship meanings and love and shared history that make us uniquely qualified for this most vital but misunderstood life relationship.

3 Responses leave one →
  1. Sue drummond permalink
    March 7, 2019

    Beautifully said. I cared for my Mom for 6 years after Dad died. It started quite informally and became all encompassing. Yes it was hard. And even harder due to siblings with a different agenda. The time was so incredible and the laughs were the most heartfelt. I miss her every day!

  2. March 8, 2019

    Thank you for the comment, Sue and for your life-changing care for your mother.

  3. Norris Frederick permalink
    March 11, 2019


    Thanks once again for a provocative and helpful post. I’m so looking forward to the book by Donna and you — and I see the forward is a wonderful journalist, Judy Woodruff! We are fortunate to have your forthcoming book that will do what your blog continues to do so well: serve as ” a practical guide to finding personal meaning in the 21st century care experience.”

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