Originally published in the Journal Inquirer
By Kristen J. Tsetsi

Not self-identifying as a caregiver and becoming isolated are about the two worst things a home caregiver can do, says AARP family and caregiving expert Amy Goyer. And the less likely someone is to recognize he or she is a caregiver, the greater the chance the caregiver will experience isolation—not only from emotional resources, but from resources that can be financially helpful, as well.

“One-third of caregivers feel isolated, and almost two-thirds have never reached out for help,” Goyer says. “They think, ‘Oh, I’m just a daughter taking care of my parents.’ But it’s important for those caring for family members to realize what they’re doing is a very substantial, important, vital effort.”

That effort is one whose estimated economic value in 2009 was $450 billion, according to figures compiled by the AARP Public Policy Institute.

And there’s a good reason Goyer automatically uses a daughter, and not a son, in the above example: facts published in the institute’s report, titled “Valuing the Invaluable,” show that the typical U.S. caregiver is a 49-year-old woman who works outside the home and spends an additional 20 hours per week providing unpaid care for an average of five years. Almost two-thirds of family caregivers are female, many of whom, Goyer says, are still caring for their own young children while juggling their full time work and an elderly or ailing parent.

“That’s the thrust of the new campaign AARP launched with the Ad council,” Goyer says, referring to a public service campaign geared toward unpaid family care givers. “It’s important to really let those folks know there is help available and they aren’t alone.”

One in four adults are providing at-home care, and for those who have never done it—many of whom eventually will—it’s difficult to imagine the weight of the experience.

“You don’t realize what a personal grieving process it is as you watch your loved one’s abilities change, or watch them become more frail,” says Goyer, who cares for a father battling Alzheimer’s.

Also largely unanticipated is the unpredictability of caregiving, which Goyer calls a constantly changing situation. Just as a routine is formed, a new challenge arises that destroys it; as soon as one health issue is tackled, a new one takes its place.

The sheer amount of work involved in being a full-time caregiver is another major stressor. AARP calls the new and sudden lifestyle “the new normal,” because caregivers are suddenly expected to manage things like feeding tubes, skin tears, surgical wounds, personal hygiene care and toilet use, assistance walking, or other duties for which they’ve not been trained and that are now part of their everyday lives.

Add to this the monetary cost, which results in a “moderate to high degree of financial hardship” for more than one in four adult caregivers, reports the AARP Public Policy Institute. Six out of ten reported being worried about the ultimate impact on their personal savings.

“If you look at lost income over a lifetime for any care giver, it’s over $100,000 in a lifetime,” Goyer says.

The institute reports that between 40 and 70 percent of family caregivers of older adults have “clinically significant symptoms of depression,” but they aren’t the only ones impacted.

Those being cared for also experience a great sense of grief and loss, Goyer explains. They experience not only the frightening loss of their health, skills, and abilities, but in many cases their role.

“If the role has been as the parent or the aunt or the uncle, that role changes slightly when someone is taking care of you instead of you taking care of them. It’s this sense of, ‘I’m vulnerable, now.’ It’s a huge loss.”

They may also feel guilty that a family member has to care for them, as well as frustrated with their circumstances.

Their feelings, combined with the feelings of the caretaker–which include frustration with the circumstances, guilt as a result of the frustration, needing time alone and feeling guilty about needing time alone, and a desire to return to the way life was before while being grateful to have the loved one in his or her life–can be a breeding ground for misunderstandings and anger on top of exhaustion and stress.

Which is why knowing where to find helpful resources, and recognizing yourself as a caretaker to whom those resources are available, is absolutely critical.

“This sense of grief and loss and frustration is a lot harder to deal with when you’re isolated and not reaching out,” Goyer says.

AARP has initiated the reaching-out process by creating the “caregiving” page under the “Home & Family” tab (found at www.aarp.org/caregiving), where users will find blogs written by caregiving experts, an option to submit questions that will be answered by experts, webinars, and forums populated by others who are, or have been, caregivers.

The site also helps users coordinate medical care, tell a loved one with physical or cognitive difficulties that they shouldn’t be driving, deal with medical professionals, and find local care providers.

Local care providers, even if they come only once or twice a week, can offer enormous relief to the caregiver responsible for a task he or she is uncomfortable with, such as bathing a family member. Professional care providers can also provide training in how to treat sores or other lesions, as well as how to use or change medical devices such as feeding tubes, catheters, and colostomy bags.

“Looking to a professional to give you some training, even if for a short period of time, would be worth it to prevent the stress that could accumulate over time,” Goyer says.

Often, local services are available, some for free and some on a sliding fee scale, but caregiver support groups, Goyer emphasizes, are always free.

While there are a number of resources available for the caregiver, there are not so many for the care recipients who may be experiencing depression, fear, or personality changes.

“You want to make sure they’re getting any counseling that’s available,” Goyer says. “But also, encourage them to talk about it or to keep a journal. Ask them how they’re feeling about the situation.”

Expressing feelings is key, and Goyer recommends journal keeping as well as honest, judgment-free communication between caregiver and caretaker.

That, and having fun together, which is often squeezed out of the schedule.

“You want to take care of the companionship part of it, not just the caretaking. Watch a favorite movie together, play a game, go to the mall and go shopping. My dad and I like to take a walk and watch the sunset. We enjoy those sunsets together so much.”


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About Kris Tsetsi

Kristen J. Tsetsi is the author of the novels "Pretty Much True..." and "The Year of Dan Palace" and the short fiction collection "20 Short Stories," all published under the name Chris Jane. Website: http://kristenjtsetsi.com


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