The caregiver's lament: How to handle the costs of care

NEW YORK – You might know P.J. Byrne from the movies, most likely as one of the fast-living 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.

His 79-year-old father has suffered from dementia for about 10 years, which currently requires 24/7 home care from not just one but often two health aides. It adds up to about US$200,000 (SS$274,500) a year in costs for the family.

They have been able to shoulder the finances so far, thanks to a combination of sources like savings, a pension, a long-term care policy and sale of the family home.

But Byrne knows not everyone is so fortunate.

"For so many families going through this, sometimes the money is just not there," Byrne said. "That to me is the scariest thing, and it breaks my heart every day."

How can people of more limited means come up with such massive financial resources?

"The blunt answer is that they can't," said Meredith Stoddard, leader on the life events team for Boston-based money managers Fidelity. "It's a big problem, which forces people out of the workforce because they have no choice – and then they're stuck."

Just consider some of these numbers, cited in the Aspen Institute report on The True Cost of Caregiving. Home health aide: US$52,620 annually. Assisted living facility: US$48,612. Private room in a nursing home: US$102,204.

Those numbers are so huge that family members often have to take on those tasks themselves. In fact, the US has 53 million unpaid caregivers, according to a study by the National Alliance for Caregiving and the AARP.

No wonder 62 per cent of caregivers for 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. Some things to remember on this difficult journey:

ALSO READ: 'I feel I have lost my freedom': Woman, 72, on struggles caring for 99-year-old dad with dementia

Tap any and all resources

In terms of governmental help for such families, the US is "not exactly known for being a leader in this area," deadpans Fidelity's Stoddard.

However, "programs do 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 can vary by state," Body explained.

Maximise employee benefits

Leaving the workforce to care for a disabled relative may be understandable and noble, but it can have huge financial implications – cutting off an income, benefits and more.

Your first step? Tap into company benefits to see if you can make it work while staying on the job.

Those might include flexible schedules or work-from-home arrangements; a "care coordinator" who can help research and select the right care options for your family; mental health and counselling resources plus back-up care assistance for when the unexpected occurs.

"In our surveys, 46 per cent of caregivers don't even think to ask about benefits like that," said Fidelity's Stoddard.

Plan, plan, plan

The best way to deal with potential caregiving costs is to plan ahead.

That means securing coverage like disability insurance for yourself or family members – typically vastly underutilised, since around one in four US adults lives with a disability, according to the Centers for Disease Control and Prevention (CDC).

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Long-term care insurance helps with issues like home healthcare and nursing homes, with policy premiums generally cheaper the earlier you secure coverage.

Fidelity offers a good roundup of caregiving issues and resources to consider when planning this all out.

One bright spot is that the federal government has put together 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 P.J. Byrne's, caring for a disabled relative is a lengthy and wrenching process that can push you to your emotional and financial limits.

"It's a slog, it's brutal, it's intense," Byrne said. "So start with love, know that it's a marathon – and remember that making a plan is such a critical part of it."