By Chris Taylor
NEW YORK (Reuters) – You might know PJ Byrne from the movies, probably as one of the fast-life brokers alongside Leonardo DiCaprio in “The Wolf of Wall Street.”
But these days, Byrne’s most important role is closer to home: that of son and caregiver.
Her 79-year-old father has suffered from dementia for around 10 years, which currently requires 24/7 home care from not just one but often two carers. This represents approximately $200,000 per year in costs for the family.
They have been able to sustain the finances so far, thanks to a combination of sources like savings, a pension, a long-term care policy and the sale of the family home.
But Byrne knows not everyone is so lucky.
“For so many families going through this, sometimes the money just isn’t there,” Byrne said. “To me, that’s the scariest thing, and it breaks my heart every day.”
How can people with more limited means have such massive financial resources?
“The straightforward answer is they can’t,” said Meredith Stoddard, life events team leader for Boston-based fund managers Fidelity. “It’s a big problem, forcing people out of the workforce because they have no choice – and then they’re stuck.”
Just consider some of these numbers, quoted in the Aspen Institute report on “The True Cost of Caregiving.” Home help: $52,620 annually. Assisted living: $48,612. Private room in a retirement home: $102,204.
These numbers are so huge that family members often have to take on these tasks themselves. In fact, the United States has 53 million unpaid caregivers, according to research by the National Alliance for Caregiving and AARP.
No wonder 62% of caregivers of loved ones with disabilities or special needs report being overwhelmed by financial stress, according to Fidelity.
This is a complex national challenge, with no easy answers. A few things to remember on this difficult journey:
PRESS ALL RESOURCES
In terms of government assistance for these families, the United States is “not exactly known for being a leader in this area,” said Fidelity’s Stoddard.
However, “programs exist at the federal and state level to help families and caregivers,” said Dyvonne Body, author of the Aspen Institute report. They include Medicaid and Medicare, Supplemental Security Income, and Social Security Disability Insurance.
“It’s a complicated patchwork of programs — some people qualify and some don’t, and qualifications may vary by state,” Body explained.
Start your research with the National Institute on Aging, Community Life Administration, and Social Security Administration.
MAXIMIZE EMPLOYER BENEFITS
Leaving the workforce to care for a disabled relative may be understandable and noble, but it can have huge financial implications – cutting income, benefits and more.
Your first step? Take advantage of company perks to see if you can make it work while staying on the job. These may include flexible hours or work-from-home arrangements; a “care coordinator” who can help research and select the right care options for your family; mental health and counseling resources as well as contingency assistance.
“In our surveys, 46% of caregivers don’t even think to ask about benefits like that,” Fidelity’s Stoddard said.
PLAN, PLAN, PLAN
The best way to deal with the potential costs of care is to plan ahead. That means securing coverage like disability insurance for yourself or your family members — typically vastly underutilized, as about one in four American adults live with a disability, according to the CDC.
Long-term care insurance helps with issues such as home health care and nursing homes, with insurance premiums generally being cheaper the sooner you get coverage.
Fidelity offers a good overview of caregiving issues and resources to consider when planning it all.
One bright spot is that the federal government has developed a “National Strategy to Support Family Caregivers,” which is in the public comment stage and could generate more help for families in need.
Yet the harsh reality is that for families like PJ Byrne’s, caring for a parent with a disability is a long and heartbreaking process that can push you to your emotional and financial limits.
“It’s hard work, it’s brutal, it’s intense,” Byrne said. “So start with love, know it’s a marathon – and remember that making a plan is an essential part of it.”
(Editing by Lauren Young and Richard Chang; Follow us @ReutersMoney)
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