Filling Our Heart Tanks
The Winston-Salem Heart Tank event spoke to the grief and strains of dementia care, as well as its joys and gifts
Buh-bum
Buh-bum
Buh-bum
Buh-bum
The thumping of hands against chests.
Marla Mackey began the heart beating. Then, one by one, she invited the rest of the 12 in the circle to join her. Without words. Simply by stepping in front of each of us, making eye contact and trusting us to mirror her movement and build on the collective sound.
By the time Marla returned to her original place, we were rhythmically one.
One heart-like beat.
One big heart beating.
And this sense of unity, of community was powerful given the reason for our convening. We were there to delve into dementia care. A field defined largely by isolation. By marginalization, neglect and a withering sense of despair. Here was nearly the opposite. A connection that comforted and strengthened–even inspired.
This was my favorite moment of a gathering that Marla, I and our two collaborators Rowena Richie and Temple Crocker facilitated in early November. The event marked the launch of Heart Tank, an effort by the four of us to help improve dementia care. With backgrounds in the arts, creative care practices, education, facilitation and workplace culture, we aim to bring new perspectives, new questions and new practices to the field. We believe caregivers, elders and people living with dementia benefit from a more holistic approach–and that dementia care partnership has vital lessons for everyone.
Our invitation to the inaugural Heart Tank gathering called it “A Courageous Exploration Into Dementia Care and Partnership.” We wanted to distinguish our event from a “think tank” — to explore dementia care less from a cerebral place and more from the wisdom of the heart.
And we were glad to find other explorers willing to spend a Saturday morning navigating this often-painful terrain with courage and compassion. The other eight who joined us brought a diverse wealth of backgrounds and experiences. Professional care partners. Leaders at institutions focused on elder care. Family care partners.
We met at 18 Springs Community Healing Center, a cozy, bright space in Winston-Salem, North Carolina that “reimagines wellness and calls the community to be responsible for the collective care of all.”
“Collective care” captures what transpired over the course of two hours. Temple, Rowena, Marla and I had planned to invite participants to reflect on both the gifts of dementia care partnership as well as the grief.
But it soon became clear that in order to get to the gifts, we needed to witness and hold space for each other’s hurts.
***
That hurt, that heartbreak is personal.
Family caregivers spoke about family members who all but abandoned their loved one living with dementia and who failed to understand the practical and emotional labor of care partnering. Two of our Heart Tank participants shouldered nearly all the responsibilities of caring for their mothers. The weight was made even greater by feelings of frustration and sadness.
There were siblings who not only failed to help, but criticized the caregiving from afar. There was frustration in this, but also sadness because their siblings were suffering from guilt and other unresolved feelings that caused fissures in themselves and their families.
“This is your mom,” one participant said. “What are you shutting down in your heart?”
The heartbreak also is systemic. We talked about how both people living with dementia and their care partners are pushed to the periphery. About how our society renders these people invisible out of deep fears around death, aging and illness.
We heard about low wages and poor treatment of employees in dementia care settings. We talked about gender, racial and class inequities in the field. About narrow, traditional versions of masculinity that define caregiving as “women’s work,” devalue empathy and fail to equip men with the emotional resiliency needed by a dementia care partner. About how legacies of white supremacy and economic injustice have largely shaped the dementia care industry. A typical result is underpaid women of color providing care for white people living with dementia.
One Heart Tank participant told a particularly heart-wrenching story about the industry’s racism–including internalized racism. The participant talked about the experience of her father in a memory care facility where he was the only Black resident. The professional staff at the facility–mostly people of color–treated him with less respect than the white residents.
Rather than provide proper incontinence care for her father at night, the staff simply covered the floor of his room with hospital “chucks.” These are designed to absorb liquids, but were a poor substitute for personalized attention. The woman’s father was left in a dangerous environment where he could have slipped and fallen. In his moment of greatest vulnerability, he was met with indifference. His humanity unseen and unfelt by individuals and by institution.
The gravity of this story changed the atmosphere in the room. The tragic, profound dysfunction of dementia care in our society became palpable. Illuminated more fully.
***
As someone who has supported dementia caregivers, but not worked directly with people living with dementia, the stories and insights shared by others helped me to gain perspective. I came to a deeper understanding of the challenges of dementia care partnering and the compassion and creativity it requires. Care companions must be willing to surrender expectations and be fully present. What works to engage or calm a person living with dementia one day may not work the very next day.
“Everything doesn’t go by the book,” one of the professional caregivers, Donna, said. “Everything is new to them. You have to meet them where they’re at.”
Donna currently cares for Temple’s mother, who is living with dementia. “When I first met Donna I was struck by her steady compassion and patience,” Temple said. “My mom delights in her.”
Temple told the group that Donna has been vital not only to Temple’s mother’s wellbeing, but to Temple herself. Donna has helped Temple avoid the exhaustion of dementia caregiving and has been a friend in what’s often a lonely journey.
Donna was the last to introduce herself at the outset of our Heart Tank. “There is a lot of expertise in this room,” Donna said. “My expertise is in being human. I’ve learned how to love.”
Those words spoke to the gifts that dementia care can bring. Comment by comment, story by story, it became clear that this work reminds us of our fundamental humanity and invites us into greater wholeness.
Temple said caring for her mother over the past several years has been very difficult, but that “it has opened my heart.”
***
I daresay all our hearts were opened during the gathering. Heart Tank allowed us to swim among others attuned to this rugged, sacred work. We recognized our wounds, our shared challenges and the need for systemic change.
Change that will require the immense, largely untapped power of community. I sensed that mighty, collective love throughout the morning. Including at the end of our time together. Just as the heart thumping led by Marla revealed our potential to come into a heartening harmony, we closed Heart Tank with a ritual that silently spoke to our essential, joyful connectedness.
We stood in a circle and thanked each other for our continued commitment to dementia care. We put our hands over our hearts, brought our hands together in a prayer gesture, then turned our palms out toward our neighbors to signify the space we’d created together.
Spontaneously, we each touched the hands of those next to us. After one failed high-five with miss hits and a lot of laughter, we tried again to do it in unison.
Got it!
At that moment of one-ness, I suspect all our heart tanks were full.
