When two is a lonely number: Group aims to connect spousal caregivers, ease isolation
Pulling a pill organizer box from a kitchen drawer in her Penfield home, Ginger Henrichs removed the contents from the Monday compartment and broke them into tiny pieces with a pill crusher.
Henrichs emptied the pills -- now almost as fine as dust -- into a carton of pudding and walked over to her husband, who is sitting in a wheelchair.
“Hey, Mike, can I give you some pudding?” Henrichs asked.
"Sure,” he replied.
Giving her husband his pills is just one of the daily caregiving tasks that she's taken on since he was diagnosed with Alzheimer's disease in 2011.
Henrichs later talked about the difficulties she faces.
“It’s really hard to have a spouse that you’ve been married to for all these years, who when he looks at you, you’re not sure if he recognizes you,” she said.
Providing round-the-clock care also has left Henrichs feeling isolated.
“If you were to ask me, ‘Ginger, are you ever lonely?’ I’ll probably say yes. Definitely.”
Henrichs is one of roughly five million spousal caregivers in the United States. According to a 2006 study by the Family Caregiver Alliance, 40% to 70% of family caregivers experience depression caused by isolation and loneliness. For spousal caregivers, those feelings are exacerbated, according to a 2019 study supported by the National Institute on Aging.
Research from Brigham Young University shows those feelings can put a person's health at risk as much as obesity.
Henrichs wishes she could talk to people who understood what she was going through -- a buddy network of sorts where spousal caregivers like her could vent and share solutions.
“Where somebody else says, 'I know exactly what you’re feeling, and this is what I did,'” she said.
There may be an answer.
Well Spouse Association is a nonprofit organization that focuses on helping spouses cope with the mental and physical challenges of caregiving by providing support groups, respite weekends, and other resources.
Laurel Wittman, Well Spouse's president-elect, said the relationships that members build with each other are the most beneficial in combating the feelings of loneliness and isolation.
“It helps fill in that gap that we don't always get, because we can't talk about our situations in the real world,” she said.
Wittman said Well Spouse's judgment-free provides a safe place for spousal caregivers to talk about the specific losses that accompany a partner-caregiver relationship.
“Loss of financial independence, partnership, companionship, there's a whole range of losses," she said. "Loneliness is one more that people can talk about in that kind of setting.”
According to a 2020 AARP report on caregiving, caregivers using social media report feeling alone more often, while in-person social interaction has proven to be important in preventing isolation.
Well Spouse does offer in-person support groups, and members like Barry Appelbaum value that interaction.
He said after his first Well Spouse respite weekend five years ago, he immediately felt like he found a home base with the organization.
“It’s helped me gain some fantastic friendships and relationships with people who have walked in my shoes,” said Appelbaum, whose wife, Susanne, suffered a massive stroke 10 years ago.
But meetings can be hard to come by.
With just 20 chapters nationwide, some members, like Appelbaum, can't find a meeting nearby. It would take him more than an hour to drive to his support group meeting in Philadelphia from Lancaster, Pennsylvania.
“I was getting burned out from that,” he said.
That prompted him to start his own Well Spouse support group four years ago.
There are other chapters across the country started by other spousal caregivers, like Edna Culp, who directs several on the West Coast.
Culp cares for her husband, Mark, who was diagnosed with Parkinson’s disease almost 21 years ago. She said her feelings of isolation and exhaustion caused her to seek Well Spouse's resources, but at that time, the group was mainly operating on the East Coast.
Eager to bring those feelings of family and belonging to the other side of the country, Culp -- like Appelbaum -- started her own support group.
With only an instruction packet and determination, she began her grassroots recruitment for members.
“I went to different hospitals, I made flyers, I gave it to social workers and case managers, I kept on posting in the local newspaper," Culp said. "It was a very slow start.”
Her group eventually grew to 10 members, and after she hosted a symposium in California, Culp’s network expanded to six groups. Culp said Well Spouse is limited financially, and she has to use a lot of her own money to fund some of the programs she implemented.
She said the COVID-19 pandemic shifted everything online, which helped build her membership. While the goal is to meet in person, the virtual meetings presented an option for many people looking for connections and support.
“A lot of these caregivers will not leave their homes,” Culp said. “So being able to do the Zoom meetings, they're just in another room, they're still there, and more people were able to join.”
Culp said her passion for Well Spouse stems from a place of empathy.
“I remember what it was like to be down on your knees crying, and there's no one there,” Culp said. “Every time I meet a spousal caregiver, I'm going to do everything I can to connect them, because there's no reason for them to go through this alone.”
This story was produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The group is supported by the Solutions Journalism Network.
The collaborative’s first series, Invisible Army: Caregivers on the Front Lines, focuses on potential solutions to challenges facing caregivers of older adults.