WELL SPOUSE VIRTUAL CONFERENCE TO FOCUS ON CARE OF PARTNERS
In the 21 years since Poway resident Edna Culp’s husband was diagnosed with Parkinson’s disease, she has had to raise their children largely on her own while simultaneously acting as his caregiver.
That’s more than two decades she has had to live without her partner, friend and lover being as fully present in their lives as she hoped he’d be the day she married him.
Today, Mark Culp rarely recognizes her anymore, and he sometimes calls her “Donna” — the name of an ex-girlfriend he had in his 20s. Her dream of growing old with him has been shattered.
But she has reclaimed 2021 as “The Year of Edna” where she gets to take a little time out of every month to pursue an experience she has pushed aside over the years while focusing on caregiving. So far, she has learned to ride a bike and visited the Carlsbad flower fields, and this summer she plans to ride in a hot air balloon.
“I have to be very intentional
about it,” she said. “Otherwise, if I just think about it in my head, it will be just like all the other years that I wish I would (do these things).”
It is this energy toward self-care that Culp shares with the members of a spousal caregiving support group she leads, and she’ll continue sharing her experience and advice during the virtual Well Spouse Association conference Saturday.
The conference will be held virtually this year,
means both speakers and caregivers can tune in from around the globe.
“With this population, we’re very careful of our loved ones that we don’t bring home anything to them, because they’re already at a very high risk for getting sick from something,” Culp said.
The second annual conference will cover the struggles that caregivers face and tips for navigating this space in their lives. Unlike many other caregiving conferences, this one is specifically geared toward caregivers of spouses and romantic partners.
The speaker lineup Saturday will include Harvard University professor Dr. Arthur Kleinman. He is the author of “The Soul of Care: The Moral Education of a Husband and a Doctor,” a memoir about his journey transitioning from a physician to a family caregiver after his wife was diagnosed with a rare form of early Alzheimer’s disease at age 59, according to an
article in The Harvard Gazette.
AARP and the National Alliance for Caregiving reported in 2020 that in a survey of nearly 1,400 unpaid family caregivers age 18 or older in the United States, around 12 percent
were taking care of a spouse or partner. Of those caregivers, the vast majority were living with their care recipient, and 66 percent said they didn’t feel like they had a choice in whether to provide care to their loved one.
Caregiving for a partner also presents its own challenges.
Spousal caregivers tend to be younger than those caring for parents, according to AARP’s report. On average, they also perform more instrumental activning
ities of daily living such as transportation, grocery shopping, housework and meal preparation, compared with caregivers of parents and other relatives.
The study also found that 72 percent of spousal caregivers reported providing medical or nursing care for their partner, compared with 56 percent of all other caregivers.
Some spousal caregivers also find it difficult to navigate caring for someone who is no longer capable of being an intimate partner, with many craving even the simplest forms of affection.
“Last year somebody mentioned something like, ‘I am really struggling with intimacy — I just want someone to hold my hand, I just need someone to hug me or someone to talk to,’ ” Culp said.
Since hosting its first West Coast conference last year, Well Spouse Association has gained a greater presence in California. Culp said that during the inaugural event last year, there was only one chapter of the association on the West Coast, and now there are four support groups spanwhich from San Diego to Washington.
Prior to January 2020, her husband was living in a board and care facility for about six months, but his health began to deteriorate and he was put on hospice care. Edna brought Mark home to care for him, where he has thrived and no longer needs the support of hospice caregivers.
But the pandemic has been trying for her. She had to quit her second, parttime job to limit the number of professional caregivers coming in and out of their home. Although the past year has had its challenges, Culp sees it as a window into her world as a caregiver for those who haven’t experienced it firsthand.
“When I go to my support group, we say, ‘Well, now the rest of the world knows what we’re going through,’ ” Culp said. “We’re isolated and we don’t really get to go out a lot because when we’re not working, we’re at home taking care of our loved ones.”