Families tap into networks to support frail elders
By MICHAELA GIBSON MORRIS
May. 19, 2018
TUPELO, Miss. (AP) — Wyna Ray Foster raised four children with her late husband.
She fed them, bathed them and carted them to ball games and swimming pools. Now the four siblings are caring for their mom as cancer and broken bones have sidelined the once independent 86-year-old.
"She wants to be home, and we want her to be home for as long as we can care for her," said daughter Janice Davidson, a retired nurse.
Davidson and sister Karen Dearman said they and their brothers, Randy Foster and Billy Foster, are grateful they can care for their mother and have the support of extended family, neighbors, their church family and hospice services. But the journey over the past 15 months has been very difficult at times and strained their capacity.
"You've got to take care of yourself to take care of them, but sometimes you don't do that," said Davidson, who takes on most of the caregiving duties during the week. She gets through by leaning on her siblings and support network. She's also found solace in a special art journal Bible that combines scripture and coloring.
With an estimated nearly 40 million caregivers providing care to adults with a disability or illness, caring for the caregivers is an increasingly important issue. Studies have shown that caregivers' health can be dramatically impacted by the demands of the care, said Tupelo geriatrician Dr. Lee Greer.
Research compiled by the Family Caregiver Alliance found caregivers are more likely to skip preventive health screenings and regular exercise and more likely to smoke and make unhealthy food choices, according to the alliance. Caregivers in rural areas were at a greater disadvantage in accessing health care resources for themselves. One study found spousal caregivers, ages 66-96, who experienced caregiving-related stress had a 63 percent higher mortality rate than non-caregivers the same age.
Caring for an ailing parent or spouse is often a labor of love, but it can be overwhelming. The physical demands of caring for a frail adult are daunting and compounded by anticipatory grief for many. Caregivers often are also juggling jobs and child-care duties. It's easy for caregivers to de-prioritize their own needs, but it can be counterproductive.
"If we're exhausted, we can't be who we need to be for these people," said Heather Palmer, director of outreach for Sanctuary Hospice House. "You are no good to others if you are not taking care of yourself."
Many caregivers struggle with perceptions that people will think they are taking advantage of others if they ask for assistance. They feel it's their obligation to care for a spouse or aging parent. "They feel guilty asking for help," said Candace Perret, NMMC Home Health social worker. "They say, 'I don't want to burden anybody.'"
There are support systems — both formal and informal — that families can tap into. Home health and hospice agencies have social workers who can help navigate resources. Area Agencies on Aging have resources to understand insurance and Medicaid waivers, as well as assistance and respite-care programs.
"You don't have to wait for a dire situation," to start investigating these resources, said Lindsey McAlister, community education manager for Baptist Booneville senior care, which provides inpatient psychiatric behavior services for adults 55 and up.
Caregivers for people with chronic, progressive conditions need to prepare for a long haul.
"This is a marathon, not a sprint," Greer said. "We need to prepare for a marathon. We need to build up endurance so we are mentally and physically able."
Nothing completely lifts the demands of caregiving, but they can be balanced.
"The caregivers who use the resources around them are the most successful," said Beth Buse, NMMC Hospice social worker. "It is good for both the patient and the caregiver."
The health care team can't always predict what will happen, but it can give guidance about the likely scenarios that a chronic condition will bring down the road, Greer said. It can allow the family to put together a game plan. Palliative care programs can help pull in resources and help with symptom management.
It's important to share the load of caregiving. Have a schedule with family members, neighbors or respite services to make sure the primary caregiver gets regular breaks to recharge. The chance to exercise, shop, go to the salon or take a nap can be restorative, Perret said.
Sometimes, no matter how willing the caregivers, patients need more than they can receive at home. Assisted living, skilled nursing or inpatient care can be the loving decision if patients' needs can't be met in their own home. Families often struggle with the decision, McAlister said.
"They think they are giving up," McAlister said. "That's not what they doing. They're trying to get them help because they do love them."
Greer said he often sees patients rebound when they move into assisted living, gaining weight and becoming less socially isolated. Caregivers can focus on visiting frequently and their relationship with patient, instead of trying to manage everything by themselves.
"It can be dramatic," Greer said, especially if the patient has been struggling at home. "They become more robust, less frail."
Sooner or later, most of us will need the support of others. Even the healthiest, most independent individuals will decline as they age. Death, after all, is not optional.
Families can help themselves by beginning the conversation about end-of-life care long before there is a health care crisis or soon after diagnosis, particularly with progressive, life-limiting conditions.
The conversations can be difficult, but are important, Buse said. They should cover legal issues like establishing power of attorney and conservatorship, especially if dementia is involved. The Conversation Project and Five Wishes provide frameworks for the conversations, Buse said.
It's important to understand what your loved one would prefer, but also keep in mind it's impossible for foresee every circumstance.
"I encourage the family not to make promises they don't know if they will be able to keep," Buse said.
The early preparation can pay off, giving caregivers one less thing to worry when the demands of caregiving are more intense.
"Caregiving is one of the hardest jobs in the world," Perret said. "It's rewarding but hard."
Information from: Northeast Mississippi Daily Journal, http://djournal.com