Steps to Take When Caregiving Without Assistance Is No Longer an Option

By Patrick Reed | June 20, 2024

As average life expectancy ticks up and the population of those 65 and older increases, the work of caregivers has never been more important. On a recent KET Forum, Charles Williams of Kentucky AARP said that over 600,000 Kentuckians serve as part-time or full-time caregivers to loved ones. This population spans generations, from senior citizens caring for their spouses or siblings, to middle-aged children caring for their parents, to young adults helping their grandparents, parents, or other relatives.

The vast majority of caregivers perform their tasks within a home setting, but that arrangement is never permanent. With the passage of time, conditions that affect those being cared for may worsen, and/or new ones may develop. For most caregivers, there will come a time when an honest conversation needs to occur about asking for help.

KET’s The Next Chapter initiative presents a series of programs addressing the complex issues surrounding caregiving. The following advice for securing support comes from our Caring for the Aging Forum and an extended interview Renee Shaw conducted with national caregiving expert Amy Goyer on Connections.

1. According to Goyer, only 3 to 4 percent of elders receive care in a nursing home setting. The majority remain in their own home or in the home of a family member. If at-home care becomes increasingly difficult, Goyer advises caregivers to first seek services to assist within the home before researching assisted living facilities and/or nursing homes. “The cost of care in facilities is something that people don’t have any concept of, until they start looking at it,” she said.
   
   For example, she says full-time space in a nursing home can cost about $95,000 to $108,000 a year. But attending an adult day-care center five days per week runs around $19,000 – still a significant expense but far less than relocating to a nursing home. Goyer said hiring a home health aide for 44 hours per week costs approximately $62,000 per year.
   
   “The first thing to do is to get the lay of the land close to where you live,” Goyer said. Offices of the Area Agencies on Aging and Independent Living are located in 15 regions across Kentucky and offer lists of nearby resources for caregivers that may include home or community-based services such as adult day care, Meals on Wheels, home modifications such as adding rails for steps in the house, and medication reminders. Visit Kentucky’s Department for Aging and Independent Living website for more information.
   
   
2. Those who are caring for veterans have myriad options for enlisting support. Goyer said she received valuable assistance from the Veterans Administration when caring for her father, a World War II and Korean War veteran. That included supplies for incontinence and mobility, and also home-based primary care. A list of support services can be found at the VA’s caregiving website.
   
   
3. Family members caring for an aging relative often incorporate a wider network to assist them with providing in-home care. This option works best for those who have close-knit family members or friends living within a short drive to the home where care is provided.
   
   “When you do have one person that’s providing the care all the time, that person can experience a lot of fatigue and burden and stress,” said Elizabeth Rhodus, an occupational therapist from the University of Kentucky Sanders-Brown Center on Aging. “But when we have a ‘care convoy’ – a whole convoy of people (are) there to support, taking rotations. It can be the neighbor, it can be the cousin, it can be the aunt or the sister.” This collective effort can help reduce burnout in the primary caregiver and maintain a high level of care within the home environment.
   
   
4. For caregivers who may not have nearby relatives or friends to assist, respite services are available through the state’s Departments for Aging and Independent Living. Taking time off from what can be an overwhelming – and unpaid – job is absolutely essential, and these centers help around 5,000 caregivers do just that, according to Victoria Eldridge, department commissioner. They do so by distributing grants from the federal National Family Caregiver Support Program, which sends money to states based on their share of the population over age 70.
   
   This program “gives you about $2,000 for respite care, a caregiver break, so you can hire somebody in the home, and it gives you about $300 – $400 for supplies. And the biggest thing about this is that it’s not asset based,” explained Kelly Parsons, a social worker at the Sanders-Brown Center. Learn more at the National Family Caregiver Support Program’s website.
   
   
5. As part of its core mission, AARP offers a comprehensive Caregiving Guide listing resources discussed above plus much more, with the goal of helping families initiate discussions about the future and learn about available services well before the time of need. Access it at the AARP website.