Fred Berney spends his nights in his basement, surrounded by video editing equipment.
The 79-year-old Walkersville resident owns his own video business, where he edits video photo slideshows or will edit videos. At one point, the company had a contract with Booz Allen to translate textbooks into videos.
But Berney is getting older. He cannot hold the camera like he once did, and it takes longer to finish a project. His clients understand, he said, but some do not return to him once he completes a project.
Still, he chips away at the backlog of video projects, sometimes into early morning hours. For Berney, night is often the only time he is able to work at his company, surrounded by the glow of computers, equipment and Amazon Echo devices.
Every day, he faces a dilemma. If he works during the day, he confines his wife Ellen, who has Alzheimer’s Disease, to a chair in front of the television. Ellen has spatial Alzheimer’s, which means she cannot drive, read or find buttons on the television remote.
But if he takes her out shopping or out of the house, he loses the hours he needs to finish a project. And the money they need to continue living in their home.
While Ellen will go to an adult day center, called Daybreak Adult Services, Inc., in Frederick, it is an additional expense on an already-tight budget.
Bills have started to pile up, and the Berney’s SUV, a 2002 model with more than 200,000 miles on it, needs to be replaced. Ellen is having more difficulty getting into the SUV, and Fred wants to purchase a used Toyota Highlander to be able to drive Ellen to her various appointments.
Without the $25,000 needed to purchase a new car and the financial strain from overdue credit cards, Fred said he was at a loss. He is not one to ask for help, he said, but at the urging of a therapist, he turned to GoFundMe in hopes of raising enough to purchase the car.
“I’m just at my wit’s end,” Fred said.
As of Friday, Fred has raised just shy of $2,000.
The Berneys are not the exception, but rather an example of the financial challenges seniors face as they age and develop more medical problems, all which must be addressed by retirement funds, Social Security payments and Medicare.
Some seniors have retirement funds or pensions, which can help bring in some income, but many seniors did not have enough to put away, said Ilene Rosenthal, program director with the Alzheimer’s Association Greater Maryland Chapter. Others might have other financial commitments or lack of access to retirement planning.
Social security payments were never meant to be the sole income, she said.
The AARP has found that someone in good health will use about a third of their social security payment on healthcare. For those in poor health, it is half, said Lina Walker, vice president of Health Security at AARP.
Those living solely on social security payments really struggle, said Linda Ryan, executive director of Mission of Mercy, a free clinic in Frederick that offers medical and dental care.
“We’re finding that there are a lot of seniors that are moving into poverty because they really can’t afford to live on that social security check,” Ryan said.
And a “devastating” disease like Alzheimer’s only increases the financial strain, Rosenthal said, as caregivers, both spouses and children, consider how to care for their loved one and if they can afford help. Some are left to handle it on their own as services can be too pricy.
Adult daycare can easily be $20,000 a year. Home care services could easily run $50,000 a year, Rosenthal said.
“It’s an expensive disease, especially as the needs change over time,” Rosenthal said. “And the demands are greater and the kind of support that’s needed changes.”
An expensive disease
Fred Berney proposed to Ellen Berney a week after they had met at a dance. They’ve been married for more than 50 years.
After moving across the country for different jobs and adopting two sons, the couple settled in Frederick in 1993. Fred ran his video business from their house on Inspiration Way in Walkersville.
After 27 years of nursing, Ellen decided to retire and join Fred full-time. She was the graphic designer for the business and the computer whiz between the two of them.
Around 2013, Fred said he started noticing that Ellen had trouble closing windows on the computer. But a mini-cognitive assessment at the doctors did not show any problems. A year later, in June, that changed, and Ellen was diagnosed with dementia, then Alzheimer’s.
Ellen has spatial Alzheimer’s, and while her eyesight is fine, her brain has trouble seeing. She cannot find the buttons on the remote. Ask her to draw two intersecting rectangles and she cannot. She cannot read, and despite a talent at knitting, her Alzheimer’s prevents her from being able to finish a row. And she could no longer help Fred with the company.
Ellen’s diagnosis meant that Fred lost a business partner but also signaled the end of his ability to work full-time at his company. The company’s cash inflow had already started to drop after the contract with Booz Allen ended, Fred said.
It nearly halted after Ellen stopped working, leaving them to rely on their social security payments to pay their monthly mortgage, insurance premiums, utilities, groceries, gas and other necessities.
His calendar was once full with different business appointments. Now, it is doctor appointments.
After being diagnosed with Alzheimer’s, Ellen’s breast cancer came back, resulting in a mastectomy. That was another medical expense. Part of her Alzheimer’s also makes her feel as if she has wires in her mouth, which stemmed from a dental visit.
After multiple visits back to the dentist to look for loose wires and doctor visits, a doctor recommended a transcranial magnetic stimulation. Thirty visits, all in Baltimore, costing the Berneys hundreds in gas and miles, in a car that already has more than 200,000 miles on it.
“The amount that I’m spending for gas could be monthly payments,” Fred said.
He does not know what he’d do if the car were to die.
Fred turned to GoFundMe to help raise the funds needed for the new used car and to help with some damage to the home following flooding. But the Berney family is also facing tens of thousands in debt, he said, due to the limited cash flow.
Fred said he had automatic payments turned on for his credit cards, which were linked to other credit cards and his business account. He got a bill debiting one of his business accounts $150, alerting him that his credit cards were all linked and that he was using a credit card to pay off another.
“At that point, I stepped back and took a look at things and realized I had about $42,000 in credit card debt that I had no way of being able to pay the minimum payment on all of these,” Fred said.
Fred was able to handle payments for two cards, but the others he let go. He did not have the cash flow to address them. He looked into doing a reverse mortgage on his house, but it would not give him enough to pay off the debts. And moving is not an option because the mortgage is so low each month that anywhere else would be more expensive, Fred said.
Ellen loves people, he said, and while the day center Ellen attends offers a discounted rate, even that became too much to handle, Fred said.
The two don’t live extravagantly, he said. They pay for cable and have Amazon Echos around the house, Fred said, but that links back to Ellen’s Alzheimer’s. He has to have cable, he said, because otherwise, Ellen would have nothing to do and the Echo devices help her communicate.
The credit cards have gone to a collection agency, he said. He wants to pay them off, but right now, it’s about getting through each day. His sons and their families help out, he said, but he does not know if they realize how poor the financial situation is for their parents.
And he does not want to burden them.
“I feel so helpless in some situations,” he said.
He averages about five hours of sleep a night. The goal is to get six. He wants to be a good caregiver for Ellen and be able to support them.
“I know it’s dragging me down,” Fred said.
A countywide problem
Ryan said Mission of Mercy sees seniors struggling at the clinic. About 14 percent of patients are 65 and older and on Medicare.
The health insurance covers 80 percent of costs, she said, leaving seniors to pay off the 20 percent, which can still be a hefty sum.
The plan does not cover dental, which means seniors have to purchase supplemental plans or pay out of pocket. Supplemental plans can be expensive, Ryan said.
“They just really do not have that extra income,” she said.
Dental care is what brought Christine, 74, who asked that her last name not be used because of the stigma surrounding the use of free medical services, to Mission of Mercy.
She worked in data integrity at Wells Fargo before retiring. She said that the bank company paid for insurance, so it didn’t cross her mind.
“It was excellent when you worked and had insurance,” she said.
But once she retired and went on Medicare, health care became more expensive. Her son helps her pay for costs, but she doesn’t like to lean on him.
So, on a Monday in October, she found herself among hundreds of people in the basement of the Church of the Brethren in Frederick. The Keymar resident was there for free dental services, one of many provided by Mission of Mercy. Health, in her case, means sacrificing pride.
“I shouldn’t feel guilt, but people do look down on you when you have to go for help,” she said.
Christine said that she didn’t know the circumstances she was facing when she retired.
“I had no clue. I probably wouldn’t have retired,” Christine said. “Or, I would have tried to make better plans.”
Those plans might have included staying employed. Medicare provides some assistance, but according to a November 2018 AARP report, people on Medicare can end up paying for high premiums for additional coverage and be left with hefty out-of-pocket costs.
Christine has ignored aches and pains for which she would have otherwise seen a doctor.
“When you are on a limited income, it really makes a difference,” she said. “When I was working, I didn’t even think about it.”
Christine has a son, who has helped her with medical problems. She chose to go to Mission of Mercy in October because she did not want to add another medical burden to her son, she said.
That is not unusual, Ryan said, but it is an increasing phenomenon. As people live longer, there are two generations that are becoming known as sandwich generations.
The first is the generation of adults with older parents that they support as well as their own children.
“And that’s a very sad place to be,” Ryan said.
The second is seniors who have much older parents, said Mindy Lohman-Hinz, with the Frederick County Senior Services Division. So those people might be caring for themselves, a spouse, older children and older parents.
But even those who do not want to be a burden on their families may end up being taken care of by the state, Ryan said.
The trouble with nursing homes
For some seniors, nursing homes are an option, but they can come with a host of problems. The first is the cost. Nursing homes can be expensive, Rosenthal said. They can average around $4,500 a month for assisted living.
A semi-private room in a nursing home facility can be over $110,000 for a year.
“In fact, for people who do end up going into a nursing home, while the average person goes in on private pay, two-thirds will probably spend down to Medicaid within a year,” Rosenthal said.
Long-term care places look at a person’s functioning and use that to determine how much they cost, Ryan said. They also look at income and assets.
“They factor in all of that economic picture and then they figure out if they can afford to take care of you,” she said.
But when a person runs out of money or get to a point where they are asset-limited, they can apply for Medicaid, which will cover the cost of care. But still, there are limited beds for people who are on Medicaid, Ryan said.
“It’s not that they want to be mercenary,” she said. “It is what it is. And it costs so much money to run.”
Fred Berney has looked at nursing homes for his wife Ellen, but he said they would be too expensive. He pointed to one in the area that could cost around $200,000 for a year. It is just not an option for the Berneys, he said, even if it might help provide the caregiving services Ellen needs with her Alzheimer’s.
“No way in the world could I think of managing that,” Fred said.
The other issue is that spouses do not always get to go to a nursing home together, especially in cases where one spouse has dementia or Alzheimer’s. It depends on each person’s functioning, Ryan said.
Spousal separation, especially for couples who have been married for more than 50 years, can be “terrible,” Ryan said.
Frederick county services
Mission of Mercy, which has two local clinics — in Frederick and Brunswick — twice a month, helps provide medication and health services to those who cannot afford to pay high medical costs, Ryan said. For the case of seniors, in addition to dental services, they can help with medications or some of the visits that would require them to pay 20 percent so that seniors do not have to tax their strained pocketbooks.
There are other services, like a senior tax credit for seniors who are still living in their homes. There are also groceries for seniors days, where seniors can get free produce and meat.
And they can, like the Berneys, qualify for the U.S. Department of Agriculture’s Supplemental Nutrition Assistance Program.
But there needs to be more awareness, said Mary Collins, with the Frederick County’s senior service division.
Even with the resources available, many seniors have trouble finding affording housing, Ryan said, calling it a “precarious” situation.
“There are a lot of difficult situations in our country when it comes to seniors,” she said.
A caregiver’s lifespan is shortened from the strain of taking care of a loved one, Fred said. He can see why.
It is stressful trying to care for his wife and keep her happy while also trying to make ends meet, he said. Next to his computers are Amazon Echos, that way if Ellen wakes up in the middle of the night while he is working, she can call out for him.
She does not even have to vocalize words, he said. If the Echo goes off, he knows that she needs him.
He has thought about bankruptcy, but there’s a lot of equity on the home, which means a judge could force them to sell it. He has always had an answer or been able to solve his problems, he said.
“I’m really at a loss,” Fred said. “I don’t know which way to turn.”
Staff writer Wyatt Massey contributed to this report.