Wendy Jones, 71, has been her husband Roy’s carer for the past three decades – even after her brain tumor diagnosis. But the Palm Beach County couple is strapped for cash and worried about how they’ll put food on the table.
Jones, who worked as a paralegal for decades, stopped working in the mid-2000s after being diagnosed with a brain tumor. Her husband was permanently disabled in a work accident in 1992. Even though they both receive Social Security payments, their savings have dwindled over the years as they have paid thousands of dollars out of pocket for medical expenses, even with insurance , according to the financial documents. viewed by Business Insider.
Jones is one of millions of elderly Americans with health problems who rely on Social Security to get by. Dozens of older Americans have told BI in recent months that they need to keep working to supplement their Social Security and pensions, even though it’s difficult for Jones and many others to hold a job given the conditions their medical
Jones, who works part-time, said they only resorted to buying frozen food and getting a reverse mortgage. Still, they fear that one more emergency medical expense could put them in the red.
The breadwinner of the family
Jones grew up in Fort Lauderdale with three siblings, noting that she had a “very happy, normal, healthy upbringing.” She became a civil paralegal in West Palm Beach, married and had four children.
Her husband worked as a mechanic and enjoyed hunting in his spare time. Jones said both were very active and healthy during the first two decades of their careers.
However, in 1992, Roy was injured in an accident at work and then got into a car accident. He was left permanently disabled and unable to return to work, receiving Social Security Disability Insurance income. He underwent several major surgeries and took various medications, some of which he paid for out of pocket.
Jones was the family’s sole breadwinner, and she noted that her employer was accommodating when she needed to care for her husband. She received bonus payments, one of which she used for a down payment on a new home. She said she earned between $70,000 and $90,000 a year, including bonuses, in the 1990s and early 2000s.
Still, she and her husband were worried about making ends meet. She said they always had food when her children were teenagers, but there were times when they resorted to ramen noodles or mac and cheese.
Once her children were in college or moved out of the house, she said she felt better about their finances; Their 401(k)s, insurance, mortgages and other financial components were “very secure.” Her children are now between the ages of 43 and 51, and three have gone to college on full scholarships or with help from their grandparents.
“They all went off on their own, got married, went to college, and so I thought things would get slower and easier for us,” Jones said. “The way things worked out, that didn’t happen.”
A devastating diagnosis
In the mid-2000s, Jones began to have problems with his vision and concentration. She would sometimes pass out at her desk or pass out for minutes at a time. She was diagnosed with a brain tumor, noting that the cost of insurance co-payments was not a “horrible burden.” But 11 months after the first operation, she again had painful migraines that felt like “a sword going through my head” and had to take more medication.
After three years of working between medical appointments, she had to leave her job and went on disability. She said she was lucky to get approved on her first try, although it usually takes six to eight months for an initial decision, after months of collecting all the paperwork.
“I kind of thought it would be the same as what I was doing, but it was two-thirds of the revenue, so a huge discount there,” Jones said. “Insurance didn’t cover that much, so then I had to start eating into my savings. The 401(k) went really fast. I have very good health insurance, but nothing covers everything, apparently.”
She also waited two years after being approved for SSDI before becoming eligible for Medicare, meaning she had to pay $500 a month out of pocket for a drug. She spent hours on the phone trying to get affordable insulin for her husband, who has diabetes, and attorneys at her previous firm helped her get additional assistance. They were forced to declare bankruptcy during this period.
“If I wasn’t educated and didn’t speak English, I couldn’t imagine ever getting this assistance,” Jones said. “I struggle with forms and applications. I don’t know how people do it. People my age often don’t know how to use a computer.”
She said preparing for unexpected medical costs from the various forms of cancer she’s been diagnosed with over the past two decades has been perhaps the most difficult aspect of their finances. She recently received several ambulance bills charging her up to $900 with insurance.
They recently received a letter saying that their Medicare premiums are no longer covered by the state of Florida. She suspects it’s because she put the money her mother gave her before she died into a savings account to pay for her house and car for this year. Although she receives $2,200 a month in Social Security and her husband about $1,000, they have to buy entrees and frozen vegetables because cooking is a challenge and they can’t afford meat. They also downsized to one car to save money.
Just scratching
Although their credit is good now, Jones said a few years ago, she would get calls from bill collectors many times a day. They live much leaner now than a few years ago.
Despite it all, they’ve been able to keep their home “very small,” even though the cost of living in Palm Beach has risen rapidly over the past few years. They received a reverse home loan, which allows older homeowners to access some of their home equity for tax-free payments. Jones said it was their only option to hang on to their home — she estimates their mortgage would have been $1,500 to $2,000 a month. They couldn’t afford to fix their sprinkler system, and when they broke a pipe, they paid nearly $1,200.
She said it’s “horrible” to pay her car insurance, property tax and homeowners insurance in the same month. Homeowner’s insurance is $4,000 annually, property taxes are nearly $2,000, and their auto insurance is $1,900.
“People have suggested we move, but we’ve lived here for 35 years,” Jones said. “Besides emotional and social support, moving is very expensive.”
Jones works part-time, minimum wage, at a bird clinic — one of the few jobs she could do given her medical conditions. She gets no more than $300 a month, which she said is affordable. She knows that if she quit her job, she would qualify for additional assistance, but she said she would rather work for her money — and get discounts on food for her birds at home.
“It’s a catch-22: People say, he’s just got to get a job, but I tried that and everything else was taken away from me,” Jones said, noting that he will work as long as he can drive, walk and answer the phones . “I didn’t move forward. I couldn’t save or progress in any way.”
Her children helped finance vacations, allowing her to attend a memorial service for her mother in the Outer Banks or travel to Alaska. Her children give them financial advice and check up on them frequently.
Jones said she’s taking it one day at a time, especially since her oncologist gave her a troubling update at her last appointment. She said her goal going forward is to make sure her husband is taken care of because she said he struggles with depression and grief.
“I’m trying to find a way that we can live comfortably without making anyone else uncomfortable,” Jones said.
Are you worried about retirement? Contact this reporter at nsheidlower@businessinsider.com.