For Amy Goyer, it was a gradual transition.
When she was in college, her parents moved away and Goyer took on the role of checking on her aging grandparents. She visited a few times a week, helped around the house, drove them to places, and sought resources to assist her grandfather in caring for her grandmother who had Alzheimer’s.
Eight years ago, as her parents battled their own health issues, Goyer moved to Arizona to look after them. Now her 94-year-old father, who also developed Alzheimer’s, lives with Goyer and she balances caring for him along with her career as an author and speaker on aging. She says it’s natural for relatives and loved ones to look after their elders, but that doesn’t mean it’s easy.
“We’re sons, we’re daughters, we’re grandchildren, we’re aunts and uncles, nieces and nephews, but it is a role that takes special effort and knowledge,” Goyer says, “and we’re not trained in our life to be a caregiver.”
Some 42 million Americans care for an adult friend or relative. It’s a job that can be physically and emotionally demanding. Goyer and Kelly Parsons, a social worker at the University of Kentucky’s Sanders-Brown Center on Aging, appeared on KET’s Connections to discuss elder care and resources available to help those looking after a loved one.
Finding Joy Amidst the Frustration and Heartbreak
Caregiving can elicit a range of emotions. Amy Goyer, who is author of “Juggling Life, Work and Caregiving,” says there’s the heartbreak of watching a loved one’s physical or mental decline due to a health condition. There’s also frustration, both in trying to navigate various health care and social service systems as well as in dealing with a loved one who may not be willing to accept your direction.
“It’s frustrating when you can’t get someone to do what you want them to do,” says Goyer. “You have to know that you can do the best you can do – you can’t necessarily change another person. You need to give it your own best effort.”
And Boyer says there’s discouragement over not being able to prevent the inevitable.
“I came to a point where I realized that I was trying to keep bad things from happening,” Goyer says. “There are some things I can’t control. I realized one day I needed to change my view of success.”
For her, that meant simply getting back up after the circumstances of caregiving knocked her down. She also came to understand that she couldn’t provide good care to others unless she took care of herself first. That may mean a short break for a cup of coffee or to text a friend. Or longer breaks to exercise, sleep, or go to a movie. And sometimes hiring respite care so she can take a vacation. Goyer also discovered that purposefully scheduling something fun to enjoy with her mother or father made a huge difference.
“I find that having that quality time and finding ways to experience joy with my loved ones and in general in my life is of utmost importance,” Goyer says. “It’s not just a nice thing to do… It’s a survival skill for caregivers.”
Assistance for Kentucky Caregivers
Because the caregiving role can begin so gradually, as it did for Goyer, she says it’s easy to overlook the range of services available to people in those situations.
“Most of us who are caregivers don’t even think of ourselves as caregivers, and that’s a problem,” she says. “If you don’t think of yourself that way, you’re not going to tap into those [caregiving resources].”
UK certified social worker Kelly Parsons says a good place to start is the Area Agencies on Aging and Independent Living, which has offices in every Kentucky county. They provide everything from home delivered meals-on-wheels to group dining options at local senior centers; special services for those dealing with brain injuries or Alzheimer’s; in-home and personal care options; and health screenings and rehabilitation information.
The state also offers counseling, support groups, respite care, small personal grants, and other services through the National Family Caregiver Support Program, which can also be accessed at your county office on aging and independent living.
Parsons says those who qualify for institutionalized care under Medicaid may instead be able to get home care provided through the Consumer Directed Options program.
Many organizations that target specific medical conditions such as Parkinson’s disease or Alzheimer’s also have telephone hotlines that can put people in contact with local support groups and assistance programs. But Parsons encourages people to consider their care options long before health concerns reach a critical point.
“It’s really scary because nobody wants to think about needing help,” says Parsons. “But it’s really important for children to sit down with their parents, or for people that are aging to sit down with their support systems, with their loved ones and really hash it out.”
Part of those discussions should include creating an advance health care directive, which delineates your wishes for medical treatment should you be unable to make your own health care decisions. Parson also suggests creating a durable power of attorney in which you give a relative or friend the authority to your pay bills or perform other financial or legal activities on your behalf.
Another good starting point, according to Goyer, is the Prepare to Care Guide from AARP. It provides checklists that help families discuss important financial, legal, and logistical factors about caring for an aging loved one.
Giving Care Is a Choice
But not everyone is willing to step into that role. In her 35 years as a consultant on aging, Goyer says she’s seen many people who don’t have family members willing or able to look after them.
“Don’t take it for granted if you’re a caregiver,” Goyer says. “It is a choice and feel good about that, be proud of it that.”
These days the typical caregiver is 49 years old, and 60 percent of them are female, according to Goyer. On average they spend 18 to 20 hours a week providing care, which many of them do so on top of a full-time job and other family demands. Goyer says some people devote as much as 62 hours a week to their caregiving duties. That’s why she says it’s important to create a team of other family members, friends, and outside help who can share caregiving responsibilities.
“When you’re starting your journey, it’s easy to feel overwhelmed,” she says. “Just set your goal to help your loved one be as independent as possible for as long as possible.”