When Jim Hewes, a San Diego painter and Vietnam veteran, received the diagnosis of colorectal cancer in February 2008, his wife, Libby, suddenly became his aide, therapist, homemaker and advocate — his everything. Through long months of chemotherapy, radiation and surgery, she dressed wounds, changed colostomy bags and tried to hold onto her own equilibrium.
Courtesy Libby Hewes Libby and Jim Hewes in the summer of 2005, before learning he had cancer.“That first year, I was on the verge of a nervous breakdown, asking the social worker for a support group, some help, anything,” she said.
Spouses caring for cancer victims endure such trials. But a new report suggests the job can grow still more complicated and demanding when the people they care for are combat-era veterans with service-connected illnesses or disabilities.
“Because of the stresses during this period, his P.T.S.D.” — post-traumatic stress disorder — “came to the fore,” Mrs. Hewes said. “The anger, the road rage — it got scary for me at times.”
And frustrating. After she’d spent months in polite, protracted discussions with the Social Security Administration trying to get disability coverage for her husband, “They called here one day while I was at work, asking for paperwork, and Jim blasted them. They hung up.”
He stalked out of a clinic, too, when the wait got too long. “He’d get angry and explode, and I had to mop up the damage,” Mrs. Hewes said. Both had severe depression.
Gail Hunt, director of the National Alliance for Caregiving, knows plenty about the sacrifices caregivers make, in part because the organization regularly conducts nationwide research. But she was startled by the results of “Caregivers of Veterans: Serving on the Homefront,” an online survey of people caring for veterans with service-related disabilities suffered from the World War II era through Iraq and Afghanistan.
Of the 462 caregivers of veterans responding to an online questionnaire, 30 percent said they’d filled that role for a decade or more, and 68 percent called their situation “highly stressful.” The proportion of veterans’ caregivers who reported a high level of physical strain, who left their jobs or devoted more than 40 hours a week to caregiving — all were several times higher than figures reported in the past by caregivers of adults whose disabilities are not related to military service.
In part, this difference stems from the long duration of caregiving for veterans, who may be injured while young and then require decades of help.
But it also reflects what medical professionals call “co-morbidities.” High rates of depression, anxiety and other mental illnesses accompany vets’ physical injuries and disabilities, the caregivers reported.
While we may think of P.T.S.D. and traumatic brain injury as contemporary injuries (President Obama called them “the signature wounds of today’s wars”), more than half the vets in this sample who served in Vietnam or earlier conflicts also had P.T.S.D. and 14 percent had a traumatic brain injury, in addition to more common diseases like diabetes, cancer and Parkinson’s.
On Capitol Hill on Wednesday, representatives from the National Alliance for Caregiving and the United Health Foundation, which underwrote the survey, and from veterans’ organizations will hold a lunchtime briefing for Congressional staff members. “We want to let Congress know what we found,” Ms. Hunt said.
The recommendations the alliance and its partners will make, based on the survey and also on focus groups and phone interviews, are fairly modest: immediate training for caregivers, even while injured veterans are still in hospitals, so that they will know what to expect and what to do; mentoring programs and support groups, online and offline, that will connect veterans’ caregivers with others in similar situations; and legal advisers for families.
Compared with the medical costs of caring for veterans, these are not big-ticket items.
“I’d like to see an advocate, someone to walk us through the system,” said Betty Sullivan of Texas, who for three years cared for her husband, Charles, a Vietnam vet in the late stages of Parkinson’s disease at 71, in their home in San Antonio. “Everything with the government is overwhelming.”
Mrs. Sullivan reluctantly moved her husband into a residential center when she was no longer able to lift him or physically care for him. He is now in hospice care.
But Jim Hewes is cancer-free, his doctors say. And slowly he and Libby have regained their footing, in part because of a caregivers class she finally found this year — the kind the report recommends for any veteran’s caregiver.
“I learned so much,” Mrs. Hewes said. “It was life-changing for me. I could get off the roller coaster.”
Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”
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