Caring for the Caregivers

I wrote this feature for the March 23, 2014 issue of The Living Church magazine. Photo by Scott Wynn.

In a storefront office steps from Harlem’s legendary Appollo Theater in one direction and the Clinton Foundation in the other, the Rev. Gregory Johnson chats with Joel Rogers, who holds his year-old niece, Malia, while Malia’s mom seeks advice in an inner room. With life buzzing along outside on 125th Street, the community’s busiest commercial thoroughfare, Johnson is ministry in motion inside, though he doesn’t mentions the name of God, has no idea if Rogers believes and doesn’t need to know. In fact, few people know Johnson is an ordained minister.

Johnson’s “congregation” is one of the largest in the city, or anywhere else for that matter. Nationwide they number 65.7 million. Years ago they had no name, though they faithfully toiled long and hard. But for the last 13 years Johnson has made it his mission to make their identity known. They are family caregivers and Johnson wants employers, corporations and, most of all the caregivers themselves, to recognize that identity and claim it because, as he says repeatedly, they are “the backbone of the health care industry” and it is his calling to see that their physical, spiritual and emotional needs are met.

“It’s been a circuitous road directed by God,” said Johnson, 67, sitting behind his iPad in his tiny office in this EmblemHealth Neighborhood Care facility, one of three established by EmblemHealth in diverse New York City neighborhoods. Johnson serves as the creator/director of the company’s Care for the Family Caregiver Initiative.

It was an unlikely road for this Racine, WI, native who grew up Lutheran, moved to New York to study at Union Theological Seminary’s School of Sacred Music and The Juilliard School, knowing nothing about the health care industry, much less a major health and wellness corporation like New York-based EmblemHealth. But when a friend who was an executive of the company suggested Johnson help it establish an outreach to family caregivers, be they members of Emblem or not, he saw an unexpected pastoral opportunity.

“Talk about the gospel in action,” he said. “It’s a huge investment and I am so grateful.”

With three supporting staff members, Johnson gives caregiving workshops, lectures throughout the city, the region, this country and internationally. With his team he has compiled resource information booklets and an 80-minute DVD, all free regardless of membership through www.emblemhealth.com/careforthefamilycaregiver.org. EmblemHealth’s Initiative has many auxiliary partners, one of which is the Episcopal Diocese of New York.

“Most people don’t know all the wonderful things that are available,” Johnson says.

But if he has a chance, he will tell them. Johnson jokes that his staff says he would show up at a garage door opening if he were asked to talk about family caregiving.

The joke may not be too far from the truth. Last year Johnson and his team put together 745 events, serving 213,000 people at civic presentations, health fairs and in faith communities.

“I would have never defined ministry in this way, yet it’s the core of it -- serving others.”

After beginning his day around 7 a.m. at EmblemHealth’s headquarters in the financial district, Johnson heads out for meetings, presentations, community gatherings, seminars, city, state and national committee meetings, the UN, the International Federation on Aging  and so many other adjunct partners where he brings the voice of the family caregiver. In addition, Johnson does many one-on-one counseling sessions for employees, members, partner associates and frankly anyone with family caregiving issues.

For all of his work he draws upon his Episcopal/Anglican spirituality. He was received into the tradition in the mid-80s and is a member of the Church of the Ascension in Greenwich Village where he is a devoted supporter of the music program. He also is a substitute organist at St. Clement’s Episcopal Church in the theatre district. And although he was ordained as an interfaith minister, he identifies as an Anglican and says it was the prayer book that helped him get through his times as a family caregiver, for his son who died of cancer in 2005 and for his partner of 41 years who died of cancer in 2011.

As if all of that isn’t enough, Johnson also holds a dual membership at Marble Collegiate Church, which is probably one of the most famous Protestant churches in America thanks to its former senior minister Dr. Norman Vincent Peale, who preached there for more than half a century. Johnson serves as the leader of Marble’s pre-service Sunday Prayer Circle.

He also managed to find time to draw on his Anglican spirituality for his just-released book, Peace, Be Still: Prayers and Affirmations: Inspiration for Family Caregivers, co-written with the Rev. Marion A. Gambardella. All of the 30 sections, each just a page and a half, include a prayer, affirmations and a scripture reading, covering such topics as Faith, Gratitude, Anger, Acceptance, Healing and Renewal. Only a few mention family caregivers specifically, so the book is helpful for anyone going through a trying time.

Recognizing the needs of family caregivers -- and family can be defined by blood relationship or through families of choice like friends, neighbors or a faith community -- is more important than ever, Johnson says, because people are living longer. The old concept of a family caregiver -- an adult child in charge of an elderly parent -- is still intact, except that now the child might be a senior citizen as well, caring for a parent who is 90 or older. It’s also tending to a spouse with a chronic illness, people caring for veterans and many other configurations as medicine has increased life spans.

These family caregivers represent a donation of services valued at more than $450 billion, Johnson says. They also can represent a loss of between $17 to $34 billion to corporations as their caregiving duties conflict with work responsibilities, which is why Johnson says it makes sense for a company like EmblemHealth to invest in their needs, bringing potential solutions, resources and tools.

“The caregiver is often the silent patient,” Johnson says. “I didn’t know a thing about insurance. My background was in theology and theatre, but I was given a blank sheet of paper and told to bring awareness to their needs. It has blessed me. I find great ideas in listening to others. It’s the great gift of sharing our weaknesses. That’s a great gift of life. It gives me more appreciation of the doctrine of the communion of saints.”

He makes sure the caregiver looks out for her or his own needs, and assures them that “it is not something you are going through, but something you are growing through.” That’s what he discovered during his periods as a family caregiver.

“I kept finding God in the journey,” he says.

Johnson’s next big effort is for a free day-long seminar on family caregiving, “Name It: Know Its Many Faces,” at the New York Academy of Medicine on April 30, sponsored by EmblemHealth, New York City Partnership for Family Caregiving Corp. Topics will include legal and financial issues as well as self-care. Details and registration are on the web site, www.corporatecaregivers.com.

While the seminar will consider contemporary challenges, Johnson likes to keep in mind examples from scripture to motivate him. He mentions Jesus’s final words as he was dying, when he looked to John and told him to behold Mary as his mother.

 “That’s caregiving from the cross. Can I do less?”