Palma Ferrarese, 86, of Leesburg, looked forward to the day when her husband, Joe, would retire so they could really enjoy life.
She remembered thinking, “Maybe when it comes time to retire, maybe we could get some respite. We had a lot of things we were going to do, but couldn’t do, because of Michael.”
Their son, Michael Ferrarese, 42, was a full-time job. He was born with Down syndrome. As far as his parents were concerned, placing him in an institution was not an option. But the caretaking that used to sap their energy now drains them in their senior years. “It’s a very difficult life, but we’re trying to do what we can,” she said.
In a recent interview, Palma Ferrarese said inflexible government rules make it difficult to get help. A program will provide assistance for her son while ignoring his aging parents’ needs, she said. “We even need some help making a bed. If they say they can only do Michael’s bed and not your bed, that’s ridiculous. … You have to take in the overall picture, make sure the parents have some help. My greatest complaint is they work on their own agenda.”
A paid helper takes her son out each day, but often has to bring him back early. Michael Ferrarese has developed a phobia about being away from his home. “If I want to go out for the day, I can’t do that,” she said. “I certainly think I should be living a little bit, instead of existing.
“It’s either about putting him in a group home or having someone coming in. We are adamant about keeping him with us.”
Palma Ferrarese also accused the state and federal government of providing more benefits to group home residents than families in her predicament.
She and Joe Ferrarese, 83, attended a conference at Falcons Landing in Sterling last month to learn more about resources for people in their situation.
Dr. Edward Ansello of the Virginia Center on Aging, at the Virginia Commonwealth University in Richmond, gave the key address. He said the Older Americans Act of 1965 was created to funnel federal money to Area Agencies on Aging. The needs, however, outweigh the resources.
He said the health care system would be in trouble if parents did not take care of their children with mental and physical disabilities. Seventy to 80 percent of them do, he said. “Family caregivers are the bedrock of long-term care,” he said. Studies show that aging couples who take care of their own children with disabilities are saving taxpayers billions of dollars.
EARLY ON, most federal money was spent on children with disabilities. “It was quite wise for a long time. Many of them did not live beyond their 20s or 30s,” he said.
People are living longer, though. The life expectancy for people with Down syndrome has doubled. “Parents are living longer and adult children with disabilities are living longer,” he said.
The result is parents in their 70s and 80s with children in their 50s and 60s. Ansello cautioned these parents to plan for the day when they won’t be around to take care of their children. He said people are failing to make realistic plans for the continuity of care. “The reason is they are self sufficient,” he said. “They are not used to asking others for help. Even siblings don’t know what the parent does for the child with the disability.”
Palma Ferrarese said she cannot count on her other two sons and a daughter to help. One son lives on the west coast. The daughter lives in Italy. And the other son, who lives in Sterling, is legally blind. “Really, everybody’s gone,” she said. “We’re home alone.”
Anne Edwards, director of the Area Agency on Aging, said one answer to Ferrarese’s dilemma is to contact organizations that provide aid to senior citizens and people with mental retardation and have caregivers from each concern provide services separately. Government grants for a specific population and for a specific purpose must be managed to ensure guidelines are met, she said. “Otherwise, you are not being accountable. … You aren’t keeping the trust.”
Unfortunately, she said, those requirements can lead to the problem of one paid helper being able to make the son’s bed and do his laundry, but not helping the parents with their chores.
Palma Ferrarese recommended improving the laws to help senior citizens and children with disabilities. She said she would like to be able to enjoy life more. “Is it too hard to expect that instead of making things more difficult for me, if the situation warrants, then bend over backwards to make sure the services are there?” she asked. “With all the stress I’m under, I should look over 100.”
She said she will be participating in a program that provides her with the freedom to hire her own help in the home, but the job would not carry benefits for the caregiver. “Why not give benefits to somebody who comes in to work for me, whether I pay for them or Loudoun County pays them?”
She admitted she is losing the energy to search for resources. “I can’t be fighting for him as much. It’s very exhausting,” she said. “I just think I would like to impress upon everyone that more consideration should be given to parents who are caring for their children at home. Be more consumer-friendly toward them.”
Edwards said the agency’s job is to help elderly people to obtain the resources they need. It lacks the finances, however, to directly help people like the Ferrareses, she said. “At least there is some recognition that older people taking care of disabled children, usually adult children, do need assistance.”
She said senior citizens who care for adult children with disabilities work “extremely hard.”
“I wish we could do more,” she said. “We hope to give them some change, relief and some happiness for themselves. More money could do more.”
EDWARDS, WHO HAS been with the agency for 20 years, said funding has been flat. “We are turning more and more to volunteers to help with home delivered meals and the senior centers.”
The community support has been wonderful, she added. “When you are in need, people come forward to help.”
Marilyn Huddell, program manager for the Area Agency on Aging, advised parents who have children with disabilities to first look after themselves. “The caregiver is the most important person in the picture,” she said. “If you aren’t taking care of yourself, you can’t be good to your loved ones.”
She said the predicament was worse for parents of children with disabilities prior to Michael Ferrarese’s birth. “Older people were falling through the cracks,” she said. “Quite literally, a lot of them were eating dog food.”
When Congress wrote civil rights legislation in the 1960s, senior citizens were recognized as a class that needed protection, she said. The Older Americans Act, Medicare and Medicaid provided resources, although some elderly people still are not getting the help they need. “Caregiving, as we all know, is one of the hardest jobs we can have,” she said.