Benton Randolph remembers well the day he fell into an exhausted sleep on his couch, sleeping through his wife's cries for help, the neighbors' 911 call and even the police breaking down the door. He had not taken seriously his exhaustion and need for help.
The Twin Cities man had been providing constant care for his wife, believing, "Hey, I can handle this."
When what he calls "the heroic phase" of caregiving came to a crashing halt, he turned to the Well Spouse Association for support.
The nonprofit organization helps spouses cope with the mental and physical challenges of caregiving by providing support groups, respite weekends and other resources. Randolph is now a longtime facilitator.
Kim Smits joined Well Spouse when her husband had a stroke at age 45, and she was raising two boys and working full time. She was one of the younger members of the group, which now spans from the 30s to the 80s.
"This group gets it," Smits said. "We have that commonality of not being able to talk to anyone" about the trials of caregiving.
Smits and Randolph are among the roughly 5 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 such feelings can put a person's health at risk as much as other well-established risk factors, including obesity, lack of physical activity or substance abuse.
Pulling a pill organizer box from a kitchen drawer in her Penfield, N.Y., home, Ginger Henrichs removed the contents from the Monday compartment and broke them into tiny pieces with a pill crusher.
Henrichs emptied the pieces into a carton of pudding and walked over to her husband, who was sitting in a wheelchair.
"Hey, Mike, can I give you some pudding?" Henrichs asked.
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.
"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 said she wishes she could talk to people who understood what she was going through, "Where somebody else says, 'I know exactly what you're feeling, and this is what I did,' " she said.
Well Spouse Association is an answer to that need. Laurel Wittman, Well Spouse's president-elect, said the relationships that members build with each other are the most beneficial in combating 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 sessions provide 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 proved to be important in preventing isolation.
The Twin Cities chapter of Well Spouse was established over 20 years ago. Mike Ryan, a member for five years, said the group filled a void.
"There's always things for the patient, but not really for the spouses," Ryan said, noting that members support each other by telling what worked for them and listening as others share their burdens in the group's monthly meetings, now on Zoom.
Twin Cities facilitator Randolph urges caregivers to seek out support: "There's some help out there."
And as the Well Spouse "Bill of Rights" states: "I have the right to take care of myself. This is not an act of selfishness."
Racquel Stephen of WXXI News contributed to this story, which is part of the SoJo Exchange from the Solutions Journalism Network, a nonprofit organization dedicated to rigorous reporting about responses to social problems.
