Caregivers face crushing demands, but help isn’t far
23rd May 2016 · 0 Comments
By Hanah Cho
Contributing Writer
(Special from Dallas Morning News/New America Media) – For the past five years, Jan Draper has rarely left the side of her husband, Gary, who has Alzheimer’s disease. The full-time caregiving has taken a physical and emotional toll.
So in late December, Jan sought relief by taking short breaks from caregiving. Two-to-three times a week for six hours at a time, she drops off Gary at Silverado’s Memory Care Community in Southlake, Texas. There, her 77-year-old husband gets proper care and enjoys activities, such as dancing, while Jan does mundane tasks. She goes to the grocery store or runs other errands and even catches up on her sleep.
“It’s so good to breathe life in again,” said Jan, 74, during one of her recent respites.
Draper admits she should have found respite care sooner since Gary’s progressing disease has become more challenging to manage in the past few years. At the same time, “I would like to keep him close for as long as I can,” she says.
Overwhelming Stress
That’s the dilemma facing many caregivers who look after aging spouses or other loved ones with chronic or debilitating diseases: It’s hard to take time off when you’re busy caring for someone else. In some cases, caregivers even feel guilty taking a break.
Yet it’s crucial to get away and avoid burnout — or worse. Several studies and surveys have shown that caregivers suffer from health issues and stress. A 2015 report from the National Alliance for Caregiving and AARP found that 38 percent of caregivers report high emotional stress from the demands of caregiving.
“The emotional and physical stress for caregivers is overwhelming,” says Chuck Fuschillo, president and CEO of the Alzheimer’s Foundation of America, which offers resources for caregivers. “The caregiver also has to realize that relief is needed, and it’s always difficult. If you’re taking care of a loved one — a husband taking care of a wife or a wife is taking care of a husband — and they’ve been married for 45 years, they’re not going to let them go.”
Caregivers can turn to family and friends for help. But when that’s not possible, there are other options. Many private care providers and facilities, such as adult day care centers, offer short-term or extended respite care. The costs range from $18 to $25 an hour, depending on the extent of care needed. Be advised that Medicare doesn’t pay for respite care except when it involves hospice care.
Senior Helpers in Dallas, which offers in-home care, gets frequent requests for respite care, says owner Bent Schoellhorn. The franchise handles two common respite-care requests: providing help when a caregiver goes on vacation or when a caregiver wants to schedule regular breaks.
“Maybe it’s three-times-a-week care where a family caregiver goes to Bible study, the grocery store or she gets out of the house to do whatever she wants,” says Tami Davis, a community relations coordinator at Senior Helpers in Dallas.
If you can’t afford to pay for help, nonprofits and government agencies may provide respite-care programs for free or a reduced fee. The North Central Texas Area Agency on Aging, which covers Collin, Denton and other counties, and the Dallas Area Agency on Aging (Dallas AAA) provide a respite-care voucher program. To qualify, the caregiver or care recipient must be 60 or older. Although requirements vary by state, residents here must have low incomes or help a care recipient with Alzheimer’s disease or other kind of dementia.
The Dallas AAA, a division of the Community Council of Greater Dallas, has provided 14,035 hours of respite care for 89 people during the past three fiscal years, ending Sept. 30, according to Marilyn Self, the agency’s executive director.
Respite Care Need to Grow
The need for respite care will likely grow as the population ages, and the number of people with Alzheimer’s disease is expected to increase, says Don Smith, vice president of community development at United Way of Tarrant County and director of the Area Agency on Aging of Tarrant County.
The Alzheimer’s Association estimates that 5.2 million adults 65 and older have the disease, and that number could more than double to 13.8 million by 2050.
For several years, the United Way of Tarrant County has focused on providing support for caregivers of Alzheimer’s patients through respite services and an education program to manage stress and depression. By improving the caregivers’ emotional and physical wellbeing, the respite care program also aims to reduce the risk of loved ones being placed in nursing homes. The efforts are part of a larger, ongoing health initiative called Live Well.
In partnership with United Way, Easter Seals North Texas (ESNT) provides in-home respite care. Caregivers receive six hours a week of relief for six months. United Way participants pay a reduced fee, based on income, which ranges from 60 cents to $1.20 an hour, according to Lenee Bassham, ESNT vice president of community living services.
“When they start the program, they’re so emotionally overwhelmed that it’s kind of hard to think about the next day,” Smith says. “What the respite and the [education] program allow them to do is relax a little bit and take stock of the current situation, and think through options for the care of their loved ones in the future.”
Easter Seals also provides respite care services for Tarrant County caregivers who are not part of United Way or other grant programs. The private pay rate is $18 an hour, according to Bassham.
Her Daughter, Poetry — And a Shower
Phyllis Ensor, 56, of Fort Worth, credits the nonprofit for giving her a break when she needed it most. For two years, Ensor took care of her husband, who had frontal lobe dementia. He died in November 2014, a little more than two years after he was diagnosed. During a particularly difficult time, she reached out to the local Alzheimer’s Association chapter for counseling. The association also referred her to Easter Seals for respite care about three months before her husband died.
“When Easter Seals came in, I was able to take a shower,” Ensor says. “I will never forget the time I took a 20-minute shower and I was in heaven.”
The break also gave Ensor and her teenage daughter time together to reconnect.
Her experience moved her to become an in-home care provider for Easter Seals. Since January 2015, Ensor has been providing respite care for other caregivers, and other personal care services to Easter Seals clients.
“This is a very dear thing to my heart after living it and seeing it first hand,” Ensor says. “This is my way of giving back.”
Before seeking regular breaks, Jan tried to find other outlets to decompress. She attended support group meetings when she could. She also started a poetry blog.
The couple’s children and friends kept pressing her to get help and take care of herself. After a bad bout of asthma late last year, which doctors told her was stress-related, Jan realized she needed to take action.
Now she has time to attend a weekly caregiver support group at the couple’s retirement community in Southlake, and go to relaxation therapy sessions courtesy of her daughter. Meanwhile, Gary enjoys his time at Silverado’s Southlake Memory Care Community, where caregivers have been nurturing, Draper says.
“Take care of yourself and take any help you can have,” she says. “Don’t be an island.”
This article originally published in the May 23, 2016 print edition of The Louisiana Weekly newspaper.
