Support for Spousal Caregivers

More needing help as numbers grow nationwide
Written by Shawnee A. Barnes - Ithaca Journal, Ithaca, NY, Dec. 28, 2011

Five years ago, Pat Phelps was getting ready to retire, when she became a full-time caregiver for her then-91-year old mother.

"She was feeble, frail and overly medicated. We didn't think she'd live more than six months," said Phelps, who shortly thereafter moved her mother to Ithaca.



For the next four years, Phelps dedicated her time to the care of her mother, Genevieve O'Loughlin, who had been living alone in Binghamton. Soon after the move to Ithaca, her mother rebounded, but it took a toll on Phelps' own physical and emotional health.

"I was living two lives. My life and her life," Phelps said.

The extra burdens Tompkins County caregivers shoulder frequently cause strains for their families. A survey of county residents published in fall 2010 showed that 58 percent of the nearly 1,200 respondents said lack of affordable elder care is a problem in the community. In that Compass 2.0 report, about a quarter of respondents indicated difficulty finding or affording care for a person with a disability or an elder. 

The survey project was supported by community foundations, human service agencies and the United Way of Tompkins County.
Phelps said she's grateful for her mother's health but that she began to resent the position she was put in. The care included dispensing medication, dealing with insurance companies and tending to her mother's needs.

Although caring for an aging parent is the more common issue facing caregivers, providing long-term care for younger family members can present similar concerns.

Linda Holzbaur spent a decade as an intensive caregiver for her husband, who, in his late 40s, developed a neurodegenerative disease. Within a few years, he was unable to walk or hold a pen and needed round-the-clock care.

Before her husband got sick, Holzbaur had an active social and civic life, but her support system soon fell apart. Unable to afford in-home care, she quit her job and applied for Medicaid to help with the mounting costs.
"You're caught in a bind," she said. "When you're a caregiver, you give up everything in your life."

Growing numbers

Like many caregivers, Phelps, 63, and Holzbaur, 55, found themselves in the position of caring for their loved one, and in the process, lost sight of their own needs. They are unpaid, often isolated, and are part of a growing number of caregivers nationwide as baby boomers begin to retire and seniors are living longer.

Nationally, it's estimated that there are more than 65 million unpaid caregivers, or 29 percent of the adult population, who care for someone who is ill, elderly or disabled. Of that number, 66 percent are women and the average age is 48, according to the Family Caregiver Alliance. The value provided by informal caregivers is estimated at $306 billion.

Reaching out for help is not always easy, said Robert Levine, who recently established a weekly Caregiver Support Group at Lifelong Senior Center on Court Street. The group meets Thursdays at 6:30 p.m. and is sponsored by the Tompkins County Office for the Aging.
"By the time they get to me they're in tears," Levine said. "They have kids and jobs, and then add on top of that an ill parent or spouse; it's too much for one person.

"People struggle to ask for help. There's a stigma around it," continued Levine, who is getting a master's degree in gerontological social work from Binghamton University, and who took on the group as part of his internship. "But (caregivers) need support because ... they also have their own life to live."

The group focuses on self-care and stress-reduction techniques.

"The trend is that self-care goes down and care goes up," he said.

To avoid burnout, caregivers should set appropriate boundaries.

"Knowing your limits and respecting your limits is very important," Levine said. "You have to make time for the things you love doing."
Support for caregivers

Lisa Kendall, an Ithaca therapist who specializes in elder care, said the rate of depression and stress-related chronic illnesses is high -- around 50 percent -- among the caregiver population. She recommends caregivers seek support.

"Being a care-partner is both an art and a science," she said. "You can't give all. Like the oxygen mask metaphor, you have to put on yours first before you can help others."

Giving caregivers a place to vent and to connect with one another, Levine said, can sometimes be a life-saver. For Phelps, it has given her perspective and a safe place to share.

"I know that I'm not alone and that things could be worse," she said. "I've learned to sort the chaff from the wheat and to let go."
She is also making sure she has more quality time with her mother, who is now in assisted living at Longview, a South Hill senior residential community.

Holzbaur said she found online support through the group Wellspouse.org, which connected her to others in similar situations. She soon began making more time for herself and spending time with her children. Since her husband's death in 2009, Holzbaur has made sure to reach out to other caregivers. She recently gave a presentation at Levine's group on the similarities of caring for an elderly parent and a spouse. Each month, Levine brings in a guest speaker.

Kendall counsels her patients to create a care-partnership.

"There can also be growth during this time," she said. "Often we see the care as one-way. We think the elderly person doesn't have much to offer. But if both parties can see they have something to offer it levels the playing field."

As for Levine, he's pleased to see the group grow and sees it as a response to a growing need in the community.

"I want to catch caregivers early on in the process before they burn out," he said. "Let's get in at year one and teach basic skills to manage one's situation." 

Article published online here.

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