You might know P.J. Byrne from the movies. He probably played one of the fast-living brokers in “The Wolf of Wall Street” with Leonardo DiCaprio.
But Byrne’s most important job right now is being a son and a caregiver.
His 79-year-old father has had dementia for about 10 years, and he needs care at home 24 hours a day, seven days a week, from at least one and often two health aides. All of these costs add up to about $200,000 a year for the family.
So far, they have been able to pay for everything thanks to savings, a pension, a policy for long-term care, and the sale of the family home.
Byrne knows that not everyone is so lucky, though.
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“The money just isn’t there for a lot of families going through this,” Byrne said. “That is the scariest thing to me, and every day it breaks my heart.”
How do people with less money come up with such large amounts of money?
“The short answer is no,” said Meredith (NYSE: MDP) Stoddard, who is in charge of Fidelity’s life events team in Boston. “It’s a big problem that makes people feel like they have no choice but to quit working, and then they’re stuck.”
Just take a look at some of these numbers from “The True Cost of Caregiving,” a report by the Aspen Institute. $52,620 per year for a home health aide. $48,612 for an assisted living facility. $102,204 for a private room in a nursing home
Because there are so many of them, family members often have to do these jobs on their own. According to a study by the National Alliance for Caregiving and the AARP, there are 53 million people in the United States who care for others without getting paid.
Fidelity says that it’s no wonder that 62% of people who take care of loved ones with disabilities or special needs say that financial stress is too much for them.
This is a hard problem for the whole country, and there is no easy way out. Some things to keep in mind on this hard trip:
Use everything you can.
The United States is “not exactly known as a leader in this area” when it comes to government help for these kinds of families, says Stoddard of Fidelity.
But, said Dyvonne Body, who wrote the Aspen Institute report, “there are programmes at the federal and state levels to help families and caregivers.” They include Medicaid, Medicare, Supplemental Security Income, and Social Security Disability Insurance.
“It’s a complicated patchwork of programmes,” Body said. “Some people qualify and some don’t, and the requirements can be different from state to state.”
The National Institute on Aging, the Administration for Community Living, and the Social Security Administration are good places to start your research.
Increase Employer Benefits
Leaving a job to care for a disabled family member may be noble and understandable, but it can have huge financial consequences, like losing a paycheck, benefits, and more.
How did you start? Use the benefits your company offers to see if you can make it work while still working there. There may be flexible schedules or the option to work from home. There may also be a “care coordinator” who can help you research and choose the best care options for your family. There may also be mental health and counselling resources, as well as back-up care help for when something unexpected happens.
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According to surveys done by Fidelity, 46% of caregivers don’t even think to ask about benefits like this.
Plan, plan, plan
Planning ahead is the best way to deal with the possible costs of caregiving. That means getting coverage like disability insurance for yourself or your family. This type of insurance is rarely used, even though the CDC says that one in four U.S. adults lives with a disability.
Long-term care insurance helps pay for things like home health care and nursing homes. The earlier you get coverage, the cheaper your policy premiums will be.
Fidelity has a good list of things to think about and resources to use when planning this.
One good thing is that the government has made a “National Strategy to Support Family Caregivers,” which is out for public comment and could help more families who need it.
Yet, the harsh truth is that for families like P.J. Byrne’s, caring for a disabled family member is a long, hard process that can push you to your emotional and financial limits.
Byrne said, “It’s a grind, it’s hard, and it’s tough.” “So start with love, know that it’s a marathon, and don’t forget how important it is to make a plan.”
