For the last three years, Deborah Mills has been caring for her mother, who has Alzheimer’s and needs constant supervision. While Mills is happy to be in a situation in which she’s able to help, the experience has been stressful — especially given the high financial cost of caregiving. “The expenses used to keep me up at night,” she said. “I felt like I should be able to provide for my mother, but the cost is so high. I do the very best I can for her.”
Kamilah Williams-Kemp, vice president of long-term care at Northwestern Mutual, has seen firsthand the struggles of family caregivers, having watched her mother-in-law care for a family member. Northwestern Mutual’s 2016 C.A.R.E. (Costs, Accountabilities, Realities, Expectations) study found that expenses relating to caregiving made up around one-third of a caregiver’s monthly budget, and Williams-Kemp emphasizes why it’s so important to plan.
“What we saw in the study was that many of the people needing care had used up their assets to cover the costs of care,” said Williams-Kemp. “That had a significant financial impact on the caregivers, who tended to underestimate the financial impacts of caregiving and weren’t prepared to assume the costs when their loved ones ran out of money.”
THE COSTS OF CAREGIVING
When it comes to the impacts of caring for a loved one, the financial burdens of caregiving were cited in the study as the second biggest impact after reduced personal time. That’s not surprising given the rising costs of caregiving.
“First and foremost, there are the direct costs of in-home care or being in a facility,” said Williams-Kemp. “Even if family members decide to administer a lot of that care themselves, the C.A.R.E. study found that those caregivers had to reduce their work hours in order to be able to manage their caregiving demands.”
That’s certainly been Mills’ experience. She quit her job and recently started a coaching practice that provides her with the flexibility she needs to keep caring for her mother.
In addition to a reduction in her income, she cites all the small expenses that add up. “Everything from prescriptions to groceries,” she said. “You put your needs and desires on the back burner to ensure your loved one is taken good care of.”
Many people don’t expect these expenses, according to Williams-Kemp. “In the study, only one in four potential future caregivers said that financial support was a key attribute of caregiving, but nearly two-thirds of caregivers actually end up providing financial support.”
HOW TO PLAN AHEAD
Four in 10 Americans are current or past caregivers, and one in five non-caregivers expect to provide care in the future. Still, a financial plan that includes long-term care can be a sensitive topic.
“I believe that people have a hard time envisioning themselves being those in need of care,” said Williams-Kemp. “I think that influences how much they put aside for long-term care expenses.”
But given the likelihood that you or someone in your family will need care, Williams-Kemp suggests that you proactively plan for these expenses. “Oftentimes, families can’t afford to pay for care, and the only choice is having family members provide that care. But that can lead to complicated relationship dynamics between the caregiver and the loved one he or she is caring for,” said Williams-Kemp.
Ensuring that you have a plan can give you more options to make choices about care and how to protect your family.
Only one in four potential future caregivers said that financial support was a key attribute of caregiving, but nearly two-thirds of caregivers actually end up providing financial support.
HOW TO COPE FINANCIALLY IF YOU DIDN’T PLAN
While the financial demands of caregiving can feel overwhelming, there are strategies that can help caregivers manage. “The first thing you’ll want to do is work with the financial advisor and attorney of the person who needs care,” Williams-Kemp said. “Look at his or her assets to figure out how to best leverage them in caregiving situations.”
If your loved one doesn’t have the financial capacity to provide for his or her own care, Williams-Kemp suggests that you have a family discussion to see who is able to contribute to the expenses involved in caregiving. You should also look into any federal or state programs that might provide support. “Often there are Medicaid or Medicare programs that would provide some support depending on the income and the assets of an individual,” said Williams-Kemp.
The things that have helped Mills cope include things like finding out her mother qualified for real estate tax relief, having a list of affordable service providers ready to call on, and ensuring that the proper powers of attorney were in place so she could act on her mother’s behalf.
PLANNING AHEAD PROVIDES CERTAINTY IN UNCERTAIN SITUATIONS
Having a plan in place for your own care or the care of your loved one allows you to navigate this difficult time without additional financial stress. It’s something that Mills wishes either she or her parents had done before her mother was diagnosed.
Those who do have a plan in place feel comforted, according to Williams-Kemp. “I’ve been told by people whom we’ve helped plan ahead that there’s an incredible peace of mind to not having to worry about the financial aspects of their care or feel like they’re a burden to the family members who otherwise would have stepped in to help,” she said.