Attending Rosalynn Carter Summit on Caregiving

One of my passions when I was working as a chaplain was providing support for caregivers.  It still is.  Last summer when I discovered that the 30th Anniversary Summit of the Rosalynn Carter Institute for Caregiving would be held in October in Americus, Georgia, I decided to register.  I’m glad I did.

It was a sold out event, including various opportunities for learning and inspiration, including a one-woman play about the life of former First Lady Rosalynn Carter as well as workshops and panel discussions on education, advocacy, research and support for caregivers.

Most inspiring for me took place Friday morning when these three women spoke: Rosalynn Carter, Sandra Deal, wife of Georgia Governor Nathan Deal, and Lee Woodruff, contributing reporter to “CBS This Morning” and Co-founder of the Bob Woodruff Foundation spoke.  All three had been caregivers and knew personally the difficulty of giving care and how much caregivers need education and support.

As Rosalynn Carter has said, all of us fall into one of these categories: 1) We’ve been a caregiver, 2) We will be a caregiver, 3) We are currently a caregiver, or 4) We will need a caregiver.  With a large percentage of the population growing older, caregiver support and education is needed more than ever.

To learn more details of the Summit, go to

Caregiving Building
Photo by JStanton

Carter sculpture
Photo by JStanton
Carter at podium
Photo by JStanton


Caregiving: Grief as Self-Care

Each month I lead a support group for family caregivers.  Our discussions cover a number of topics about the art of giving care:  spirituality, ambiguous loss, grief, family dynamics, compassion fatigue.  But there’s one topic I haven’t introduced since the early days of the group: self- care.

Why?  Why have I avoided this important topic?  Surely self-care is an important and necessary facet of avoiding burnout.  Surely the wisdom of self-care teaches us to take respite time, do something enjoyable, exercise, eat nutritiously, link up with supportive friends.

So why not talk about it?

I haven’t talked much about self-care because each person in the group, being the wise and experienced caregivers they are, knows all the typical advice.  And they practice it well.  They don’t need a refresher course.   In fact, they could teach it to others.

But recently I read something new about self-care, a thought I hadn’t considered.  It comes from Dr. Rachel Naomi Remen in her book, Kitchen Table Wisdom.* She states:

People who really don’t care are rarely vulnerable to burnout.   Psychopaths don’t burn out.  There are no burned-out tyrants or dictators.  Only people who do care can get to this place of numbness.  We burn out not because we don’t care but because we don’t grieve.  We burn out because we have allowed our hearts to become so filled with loss that we have no room left to care. In my experience burnout only really begins to heal when people learn how to grieve.  Grieving is a way of self-care.  (pp.52-53)

I read this to my support group and asked them what they thought about this perspective.  They agreed with Dr. Remen.  And so do I.  Trying on stoicism, pretense, or toughness doesn’t help us work through the myriad feelings of grief. Expressing our grief does.  Grieving is self-care.

The hard work of grieving releases pain and opens up an inner space for the life-strengthening attributes of relief, comfort, and even peace.  While we may not want to be in touch with difficult feelings, or express them, it is by engaging in our grief that connects us to our deeper selves.   And when we do this, we discover a strength that carries us forward into the hard work of caregiving.

Grieving is a form of self-care.

*Published by the Berkley Publishing Group, 1996.

Learning from Family Caregivers

What a great group!

My previous experiences of leading support groups have taught me that not all groups function as well as this one.  This group of family caregivers make my work as facilitator easy.

They gather monthly, sharing the struggles of being the primary caregiver for their loved one.  They care for siblings, parents, or most often spouses, usually wives caring for husbands.

These intelligent, mature, strong, and wise caregivers demonstrate the skills of compassionate listening and appropriate confidentiality.  They exhibit a depth of insight that comes only with an equal depth of life experience. And just as important as the skills they possess, they are kind.  They come with open hearts, never judging, minimizing, or fixing the problems of another group member.  Over and over again I’ve been deeply moved—and blessed—by their stories and wisdom.  They’ve taught me a lot.

These family caregivers live in a difficult space.  Their loss is an “ambiguous” one.  That is, their loved ones are still alive—they haven’t died—but due to their limitations, they cannot relate to their caregiver as they once did.  This is indeed an “ambiguous loss,” as defined by Dr. Pauline Boss, an educator and researcher on this topic.

Reiman Botanical Gardens, Ames, Iowa
Photo JStanton

The caregiver is now solely responsible for providing the emotional energy to the relationship.  They must show love and support to their loved one, who are limited in their ability to express love and support in return.   In many ways, these caregivers are faced with a new relationship, while dealing with the memory of—and the longing for—the former one.  They must learn to live with this loss.

For most of these caregivers, the demand to find new ways of living and loving appeared with no warning.  A stroke, a cerebral hemorrhage, or an accident simply “showed up” one day and changed their lives forever.  It’s a way of life that can only be negotiated with large doses of patience, courage, and trial and error.

It’s not an easy road they travel, and sometimes they feel depleted, needing nourishment themselves.  Hence, the support group.  And what a group it is: giving and receiving that which resides most deep in their hearts and needs open expression.

I’m privileged to facilitate this group of wonderful people!