Published on October 05, 2017

Don’t go it alone, if you’re a caregiverDon’t go it alone, if you’re a caregiver

Claire and Henry Tousignant of Centerville were once avid square dancers.

“We were really absorbed by it,” recalled Henry, 93.

The couple, who were married in 1946 when Henry returned from World War II, danced three or four times a week.

But those days are no longer. Henry is now caregiver to Claire, who, following a stroke, suffers from dementia and loss of memory.

“It’s a twenty-four-seven job. I call it a job, but it’s not a job, I mean I love the girl,” said Henry.

Job or not, it’s no easy task. Claire may get up three or four times in the night, and requires constant care and supervision.

“You’re tired all the time, but you just chug along,” Henry said. “They keep telling me that at 93 I shouldn’t be doing these things.”

For the past four years, Henry has turned for help to a men’s support group organized by Elder Services of Cape Cod and the Islands. The meetings, held two mornings a week at the Barnstable Senior Center, are usually attended by six to eight other caregivers, along with a leader, Frank Riley.

At first, Henry was reluctant to go. His unwillingness, he said, was simply fear of starting something new. It was like trying to get others to learn square dancing.

“Did you ever try to get someone to try square dancing? To get someone to go and do that is very difficult, you get all kinds of excuses. It’s great but there’s always something that prevents you.” he said.

An Education

Being a caregiver is like learning the complicated steps of a square dance, observed Henry. “No one knows what to do until you’re taught how to do it.”

At the support group meetings, Henry discusses his problems, learns about resources available to him, and gains vital information, like how to have a ramp built so Claire can get down the steps from the house to the garage.

He also learns what to expect next as his wife moves through the progressive stages of dementia.

“I think it’s almost a necessity, it’s an education,” he said.

Unfortunately, many men in Henry’s position resist joining such groups, said Paul Wild, contracts and customer service manager at Elder Services of Cape Cod and the Islands.

“People hesitate to ask for outside help, they feel everyone needs to make it on their own,” he said.

There is a “terrible need” for these types of programs for men, he said. They are more inclined to discuss caregiving issues with other men.

To be a good caretaker, you must first take of yourself, he said. He compares it to the advice you get on an airplane. You put your own oxygen mask on first before you can help someone else.

Trying to go it alone can result in caregivers becoming exhausted, overwhelmed and depressed, and not taking care of themselves, Wild said.  The warning signs are anger, overreacting to a small slight, and stress, he said.

Other Caregiver Services

Elder Services is part of a network of nonprofit agencies throughout the state that contracts with 50 provider agencies, organizations and companies that provide services to caregivers and other elderly residents, ranging from respite care to Meals On Wheels.  The services are subsidized by the Commonwealth.

According to Wild, the need is great. There are 80,000 senior citizens in Barnstable County, making it the 13th most elderly county in the country, and the largest outside Florida. To meet the need, Elder Services has three full-time information specialists who review a client’s needs and arrange for the appropriate care.  The application for services is free of charge.

Depending on what’s needed, service providers offer help that ranges from housework and grocery shopping, to daycare and transportation to the doctor.

“If [the caregiver] doesn’t have to do shopping, cleaning or laundry, they can focus on caregiving,” explained Wild. The goal is to enable elderly to stay at home for as long as possible.

To pay for the helpers, clients pay a fee based on their income, typically a flat fee between $10 and $150 per month. The state subsidizes the rest, up to $250 per month.

Elder Services reviewed Henry’s case and provides nine hours of outside help per week. That allows Henry to go to the supermarket, his support group, or to church for a few moments of quiet reflection on a Saturday evening. It also allows him to perform tasks around the house – difficult to do otherwise, as Claire requires constant attention.

“It’s just two hours a day, it goes by very fast,” said Henry.

Henry’s support group is supported by a federally funded program called “Powerful Tools for Caregivers,” an evidence-based program that funds support groups and teaches caregivers.

Another federally supported program offered by Elder Services is the Family Caregiver Support Program, which is designed to create better emergency plans.

“In many situations there’s no emergency plan,” said Wild. For example, a 75-year-old man might be admitted to the ER, where he reports that his 95-year-old mother is at home alone. (Wild said 60 percent of the time, the caregiver passes away before the care recipient.) The program offers a short-term intervention to analyze and research the need and have outreach workers write up a care plan.

There’s also a free money management program, where AARP-insured volunteers offer free financial advice, balance checkbooks and help find sources for purchases of things like wheelchairs.

Additionally, the Cape Cod Healthcare Visiting Nurse Association has been providing care throughout Cape Cod for more than 100 years. The VNA offers comprehensive home health and hospice services that enable individuals – from newborns to the elderly – to receive care in the privacy and comfort of their own homes. Available 24 hours a day, 7 days a week, the agency covers a large geographic area of more than 1,300 square miles, servicing 85 towns and villages on the Cape and reaching over the bridges off-Cape to the north and west.

Whatever a person’s specific situation, whether caring for an elderly relative or a grandchild, Wild’s advice is “don’t hesitate, don’t postpone it, call Elder Services and get started in the care you need.”

That’s advice Henry Tousignant agrees with.

“You never know how to do these things until you get advice from somebody. I should have gone sooner.”