Aging Gayfully: Life After Caregiving
Christopher MacLellan knows stories of caregivers can bring comfort. That's why he's talking about the caregiving experience he had with his late partner Richard Schiffer.
"There are no strangers when it comes to caregiving. We may not know each other personally, but when we share just a little bit of our stories, we understand the journey, we know where you've been, and we know where you're going. It's the stories where people can find comfort in knowing they're not alone," says Christopher MacLellan.
MacLellan, founder and CEO of the Whole Care Network (WCN), believes that as millions of people become caregivers for their partners, siblings, parents and loved ones, they'll ultimately also face their own life after caregiving. There will be that point in time when your loved one dies, and you will be trying to figure out how to live on.
"Creating a life to love after caregiving ends. It's not as easy as it sounds. There's a lot of dark days after."
Through his own caregiving story, MacLellan, who lives in Florida, has learned there's power in our narratives and insists people can connect to support one another.
"What do people do with life after caregiving? That is my focus. Creating a life to love after caregiving ends. It's not as easy as it sounds. There's a lot of dark days after," he says.
The WCN exists to connect people through resources, story sharing and support. Though there's plenty of information readily available via the internet, the WCN delivers resources and direct support in one place.
MacLellan has also created Aging Gayfully, which offers a social network of support through travel experiences, and a podcast called "Healing Ties," with more than 300 episodes. There's nothing new that can be told to a caregiver, he says, but the story sharing can serve to connect caregivers in a meaningful way that bolsters them.
What Caregivers Need
According to MacLellan, caregivers need three things: validation that it's hard, resources which often come from one caregiver to another, and some form of respite.
For MacLellan, there was a time when life as a caregiver looked bleak and lonely. He faced dark days and had little to no support from others. Despite his extensive background in social work and theology, he was not emotionally prepared for what being a caregiver would require.
"Caregiving broke me. I still haven't recovered from it. And I wouldn't change anything about it," he admits.
MacLellan's caregiving journey began when he devoted himself as caregiver to his late partner, Richard Schiffer, who had esophageal cancer. Their experience, chronicled in a 2015 South Florida Sun Sentinel piece, "In Sickness and In Health," was a Pulitzer Prize-nominated three-part story that has caught the attention of more than half a million readers since its publication.
"Caregiving broke me. I still haven't recovered from it. And I wouldn't change anything about it."
It told the story of a same-sex couple journeying through the difficult medical and legal systems prior to marriage equality becoming law. The Supreme Court case Obergefell v. Hodges made same-sex marriage legal throughout the United States in 2015, the year after Richard Schiffer died.
"Our story is no different than the millions of other caregiving stories out there; it just happened to be publicized. And that's why it's important for me to continue with Richard's legacy — to provide a resource for people that are in the same position that I was when we got that diagnosis," says MacLellan.
He also emphasizes that caregiving knows no boundaries: "Caregiving impacts you whether you're gay or straight, Black, white, brown, yellow… no matter what economic status you're in, what religious background," he says. "Caregiving brings people together from diverse backgrounds."
MacLellan says, "One of the reasons our story was so successful – people put themselves in our shoes. They could see the calamity. In the end, the story just happened to be about two men."
Even so, their experience was before marriage equality and the comments the story received were surprisingly humane and compassionate. "Everyone understands what love, care and commitment is about," MacLellan notes.
The Backbone of Our Health Care System
There are an estimated 53 million family caregivers in the U.S. MacLellan says he feels that number is likely low, due to the reality of the number of men who do not identify as caregivers, or people not recognizing that they're in the midst of caregiving, when in fact they are. Ultimately, it comes down to the fact that caregivers are the backbone of our health care system.
"Advocacy is the greatest, the most important job of every caregiver."
"Think if every caregiver decided, 'I'm going to go on strike today and I'm going to take my care partner to an emergency room or a senior center or an urgent care center, and I'm just taking the day off!' What would happen? The whole system would crash," MacLellan says.
And as caregiving is never an easy job, there is a lack of advocacy for patients in the system. Caregivers can't be everywhere at once.
While Schiffer was hospitalized, MacLellan was often aware of the great number of patients who had no visitors, let alone advocates to help them navigate the system. "Advocacy is the greatest, the most important job of every caregiver," he explains.
MacLellan often had to step in as an advocate for Schiffer. In many cases, the situation could have had tragic results had MacLellan not questioned the care decisions that his partner was unable to make alone. If someone doesn't have anyone, no next of kin, they don't have a built-in advocate.
As part of his role as an advocate, MacLellan also kept a folder that he referred to as the "green folder," which contained the necessary living wills, power of attorney instructions, and health care surrogate forms. He always carried the folder with them.
My Green Folder is currently being developed into a film that depicts the story of two committed men as they traverse life and the difficulties and joys along the way. It's a love story.
The Challenge of Access
Many people, especially same-sex couples and unmarried couples, are faced with health care access problems as a partner. If an advance directive is not in place, you don't have access to help your care partner.
MacLellan urges caregivers to reach out and seek support for themselves, to know that there is hope for a life beyond caregiving.
"The difference is a heterosexual couple won't be immediately questioned like a same-sex couple would be – at least back then (when Schiffer was ill)," MacLellan says.
For MacLellan, the green folder demonstrated that he had the legal authority to speak on his partner's behalf. They'd gone to the trouble to get all the necessary documents in place because new medical providers might question Schiffer's treatment or MacLellan could be denied access to see him.
"The caregiver knows more about the care partner's condition than any physician, nurse, etc. The caregiver is the one that's the lead of the care team," he says. Doctors and other clinicians often don't have a handle on the patient that's right in front of them, while a caregiver can be a lifeline to the patient.
To further complicate caregiving, death and dying are not often talked about; people don't always plan for their inevitable demise. For many, it's scary to arrange end-of-life directives.
MacLellan urges all caregivers to reach out and seek support for themselves, to know that there is hope for a life beyond caregiving. Though we may recognize a sort of pre-planned grief where we understand we will eventually lose the ones we love and are caring for, it's difficult.
"Grief can be immobilizing," says MacLellan. "Like plants that need to be watered to bloom again, so do caregivers. They need to find that water so that they can find themselves again."