By Laura Hendrix Corbin
Meg Croes Smith of Spartanburg looks back at her months of taking care of her 98-year-old mother before she passed away in January and wishes there had been a list.
“There ought to be a list of questions to ask, things to know,” she laments.
Like so many adult children these days, Smith and her siblings were faced with caring for an elderly parent without a lot of preparation or planning. Their mother, Jean Croes, had suffered a stroke in October 2019, then another while she was hospitalized following the first.
“All I knew was that Mother wanted to be at home. We had gone through this 10 years ago with Dad. He went into a nursing home, and we didn’t take him home, and I regretted it,” Smith says. After a brief stay at a nursing home, Smith’s mother went home, and Smith moved back to Spartanburg from Jacksonville, Florida, to stay full time with her.
“The nursing home set up home health. They took care of everything — got her a bed, got people who would come in once or twice a week. They were great,” Smith says.
Still, Smith was tapped to be the main caregiver since her siblings worked full time.
“I had never done anything like this in my life,” she says. “I was scared to death.”
One resource Smith had was a sister-in-law who is a nurse; without her guidance, Smith says she wouldn’t have known what questions to ask, what she could expect taking care of an elderly parent or what resources were available.
Michelle Anderson, a family caregiver advocate with the Family Caregiver Program of the Appalachian Council of Governments, says while there may be a few general items one could put on such a list, every situation for caregivers and care receivers is different, so there’s not a “one-size-fits-all” list of questions.
The Family Caregiver Support Program provides help to caregivers who are unpaid adults caring for someone who is frail or disabled (age 60 or older), unpaid adults caring for someone with Alzheimer’s disease or a related illness, and grandparents or relative caregivers (age 55 or older) raising children ages 18 or younger.
The Appalachian Council of Governments serves as the Area Agency of Aging (https://www.scacog.org/aging-services) for the six-county Appalachian region that encompasses Anderson, Cherokee, Greenville, Oconee, Pickens and Spartanburg counties. The AAA provides information and assistance to older adults, persons with disabilities and caregivers. It also operates the Regional Long Term Care Ombudsman Program, the Regional Family Caregivers Program and the I-CARE program.
“Every state has an aging department people can reach out to,” Anderson says. “The services of the AAA are free. We provide unbiased information because we are not trying to sell or promote any product or service. We are caregiver advocates. We can’t tell you what you need to do, but we can provide you with the resources and listen to you regarding what you or your family member needs. Our resources are there, whether you need insurance counselors [or] information on drug plans.”
The Area Agency of Aging can also help people find out if a family member is eligible for certain benefits, clarify long-term care rights and offer guidance on ensuring that a family member is being treated appropriately.
The South Carolina Department of Aging estimates that there are more than 770,000 caregivers in the state, with that number likely to grow as the population ages and more people move to the state, particularly those close to or at retirement age. Nationally, about 43.5 million caregivers provide unpaid care to children or adults, adding up to an estimated 37 billion hours of care, including 34.2 million for adults aged 50 or older.
Anderson says the best advice she can give to caregivers is to plan before there is a crisis situation.
“If people are in panic mode, they tend to grasp whatever is in front of them, which may not be the best choice,” she says. “Reach out to a caregiver advocate for help.”
Her biggest tip: Educate yourself about what a parent’s needs are going to be, what options are available and what benefits they may be eligible for.
“Do your own research,” she says. “Don’t go off the word of someone else. So many people, for example, think Medicaid is going to automatically take your house. There are options that people should research.”
Anderson points out that a parent’s home may be the resource needed to financially support that parent’s care, “but that’s why they’ve spent their lives investing in their home.”
Family members shouldn’t wait to consider the “what ifs,” she says.
“While Mom and Dad are still able to make decisions, talk about what will happen if they need care later in life. If you’re in your 40s or 50s, it’s not too early to talk about what will happen if you need care later in life. We need to understand that we’re all potentially one second away from a situation in which long-term care is needed. Have a plan. Have an idea of what you or your parents want to happen. It’s a difficult conversation to have, but have it now, not when you find yourself in a desperate situation.”
In a caregiver’s journey, it’s important to know what the goal is — keeping the parent at home versus in a nursing home or hospice facility, for example.
“Also, know what your own limitations are,” Anderson says. “Know when it’s no longer safe for you to care for your parent. Know when it’s no longer physically possible for you to do it. Know when to say it’s enough. Statistics show that 40% of caregivers die before the person they’re caring for. That’s not good.”
Taking care of oneself is important for a caregiver as well, experts say. Family caregivers are at higher risk of stress, depression, physical and financial problems, and increased mortality, according to the Appalachian Council of Governments. The caregiver’s physical health is an influential factor in the decision to place an impaired relative in a long-term care facility.
AAA family caregiver advocates can provide family caregivers with information and assistance in accessing community services, support and counseling, and even caregiver training. Eligible caregivers also can obtain a mini-grant for respite or supplemental services. Resources also can be found at https://www.getcaresc.com/ and https://aging.sc.gov/programs-initiatives/family-caregiver-support.
Anderson says family caregivers need to consider three major things: first, what does the care receiver expect; second, what does the caregiver expect; and third, what is reality.
“There has to be a balance among those things. You have to pick and choose your battles for what is realistic,” she says. “You have to prioritize what’s the most important thing for both the caregiver and the care receiver.
“Reach out to a caregiver advocate,” she adds. “We can help you navigate this caregiver journey.”
Caregivers by the numbers
Key facts about caregivers in the United States:
- 34.5 million Americans have provided unpaid care to an adult age 50 or older in the past 12 months, according to the National Alliance for Caregiving and AARP.
- The majority of caregivers — 82% — care for one other adult while 15% care for two adults and 3% care for three or more adults, according to the National Alliance for Caregiving and AARP.
- Unpaid caregivers provide 80% of all long-term care in the United States, according to the Alzheimer’s Association.
- Nationwide, more than 16 million family members and other unpaid caregivers provide about 18 billion hours of care to people with Alzheimer’s, according to the Alzheimer’s Association.
- The average caregiver foregoes $659,139 in salary and retirement benefits over the course of a lifetime, says the Appalachian Council of Governments.
- U.S. businesses lose $11 billion to $29 billion per year due to decreased productivity by stressed working caregivers and replacement costs when employees resign to become full‐time caregivers, says the Appalachian Council of Governments.
Tips for caregivers
The Transamerica Institute, a nonprofit, private foundation dedicated to identifying, researching and educating the public about health coverage and wellness, retirement and other relevant financial issues, offers these tips for caregivers:
- Take care of your own health and wellness. Your physical health is as important as that of the care recipient. Eating well, getting enough sleep and exercising could help you have more energy to tackle your caregiving responsibilities.
- Enlist others to share the caregiving responsibilities or help you with non-caregiving responsibilities. Make caregiving a team effort by asking for help from other family members or friends, or seeking out community resources, such as adult day programs or transportation services.
- If employed, strive to find ways to balance caregiving duties with employment and take steps to minimize any negative impacts to your resume, income and benefits. Identify and carefully consider all of your options before making any decisions to reduce job responsibilities or quit your job.
- Research whether your employer offers any programs or benefits to help caregivers. For example, more and more employers are now offering flexible work arrangements. Many employers offer an employee assistance program, which may include referrals to counseling services and support groups for caregivers as well as long-term care services for care recipients.
- Learn about the Family and Medical Leave Act, a federal law that requires covered employers to provide employees with protected, unpaid leave for qualified medical and family reasons. Visit https://dol.gov/whd/fmla.
- Keep your own long-term financial security top of mind. As a caregiver, it is especially important to budget, keep track of expenses and save for the future.
- Explore programs that provide financial assistance to caregivers. Some states have programs, such as Cash and Counseling, for Medicaid recipients that the care recipient can use to pay caregivers. If the care recipient has a long-term care insurance policy, research if it enables you to receive payments.