Snohomish County program is a lifeline for unpaid caregivers

SILVANA — Carol Ferrera turned her husband’s wheelchair to face the comfortable couches in the living room of their rural Snohomish County home.

“Excuse me,” she said as she stepped away to grab a napkin from the kitchen. She bent down and gently cleaned Les Johnson’s face, wiping off crumbs from the peanut butter and jelly sandwich she made him for lunch.

Ferrera and Johnson have been married for 15 years. Johnson, 83, is an expert angler who has written for and edited fly fishing magazines and books. Ferrera, 69, is a longtime angler and retired from an international diagnostics company in October.

She’s Johnson’s full-time caregiver. Her active, outdoorsy husband had a stroke Aug. 31, 2009. The part of his brain that controls the left side of his body was badly damaged and he’s been in a wheelchair since. He’s in physical therapy to retrain his brain. He works on taking steps with a walker. His left hand stays curled in a tight fist unless Ferrera eases his fingers open.

“Basically, when he had his stroke, I was it,” she said.

She helps Johnson shower, brushes his teeth, makes him food, shaves him and spends hours on the phone with his doctors. That’s on top of housework, yard work, grocery shopping and bills.

“Carol works really hard to get going for the both of us,” Johnson said.

Ferrera is one of at least 65,000 unpaid caregivers in Snohomish County, and that’s a conservative estimate, said John Peterson, co-manager of the county’s Family Caregiver Support Program. It’s hard to get a firm number because most don’t consider themselves caregivers.

An estimated 16.6 percent of adults in the U.S. are caring for another adult, most of them for someone older than 50, according to a June 2015 report from the National Alliance for Caregiving and AARP Public Policy Institute. In Snohomish County, that’s more than 90,000 people.

Finding help

Learning to be a caregiver after years of being someone’s spouse, child, grandchild or friend is an emotional and draining journey.

Often, it’s a lonely one.

In Snohomish County, the Family Caregiver Support Program offers help to people caring for a loved one who can no longer safely care for themselves. The Stillaguamish Senior Center, Senior Services of Snohomish County and Alzheimer’s Association are hubs for the state and federally funded services, backed by the Snohomish County Long Term Care and Aging division.

Caregiving can be rewarding but overwhelming.

“Here they’ve been their spouse, their lover or their friend, and now they’re the caregiver, and there’s a burden with that,” caregiver specialist Debbie Cook said.

At the senior center, Cook and fellow specialist Karen Anderson urge people to talk about their struggles and successes. The program is free for unpaid caregivers 18 or older. Help is available for people caring for a loved one with a disability, chronic or terminal illness or dementia, including Alzheimer’s. There’s an assessment to figure out what help people need.

Ferrera started going to a support group in Arlington and then joined a smaller one in Stanwood. There usually are five people at their gatherings.

“A lot of these things you can’t talk about to anybody else,” she said. “They don’t understand. Your friends and family want to support you, and they do, but the real issues get talked about in that group.”

Caregiving changed her life. It became difficult to keep up with chores that once were routine. The program helped her find a housekeeper and handyman.

“We’re all about the caregiver,” Anderson said. “But when we first sit down the first thing they want to talk about is the care receiver.”

Caregivers often become so focused on their loved ones that they don’t eat, sleep or see the doctor enough themselves, Cook said. Specialists can point them toward classes, financial and health consultations and respite services, where care is provided for their family member so they can get a break.

The first stumbling block for people is a doozy: Most of them don’t recognize themselves as caregivers. Their parents took care of them as a kid and now they’re returning the favor. They vowed to love their spouse in sickness and in health, and that’s what they’re doing. Many are in the “sandwich generation,” caring at the same time for children or grandchildren and elderly parents.

Countywide, there are 200 people in the support program. Nearly two thirds are 60 or older. About a quarter of them have left their jobs. Most — 85 percent — are caring for someone with memory loss.

A long goodbye

Judy and Tom Donoghue were married for 43 years. They raised three children and had years of adventures. The couple loved hiking and camping. They’d dance in a dim corner of a cruise ship on vacation, in a Conway bar when a local band was playing, or around their living room.

Tom Donoghue was diagnosed with dementia in 2006. For the last eight years of his life, Judy Donoghue helped him shower, dress and eat. The once independent, hardworking man couldn’t pick an outfit or button his pants. Dark patches on the ground scared him — to someone with dementia, a black rug looks like a gaping hole in the ground.

Tom Donoghue died in June 2014. His wife had just made arrangements to move him into a care home because he was becoming aggressive, a symptom of the dementia.

“In the beginning, it was normal,” Judy Donoghue said. “But in the last two years, it was different. It was like the long goodbye.”

Tom Donoghue retired from his window-washing business when he started forgetting where jobs were. He had owned the Martha Lake Union 76 station for 18 years, and worked 13 years for Bell Telephone.

Judy Donoghue was a teacher in Arlington for 27 years. She retired in 2008.

She was in the caregiver program and took a six-week workshop called “Powerful Tools for Caregivers.” She joined a support group, listened to other caregivers and gathered ideas, she said.

She made little cards that said, “Thanks for your understanding. My husband has dementia.” She handed them to people when they went out. It was a subtle way to explain why he ate with his hands or came with her into the handicapped stall of the women’s restroom. Most public places don’t have a family restroom, she said.

“I never say I made a sacrifice, but I put my life on hold to care for him,” Judy Donoghue said.

Crisis mode

Depression, anxiety and physical wear and tear can be serious issues for caregivers.

Most of them don’t get help until they’re in “crisis mode,” when they are exhausted and unsure how to keep up with the caregiving and their day-to-day life, Anderson said. She and Cook would like to step in long before then.

Enormous mental and emotional strains come with watching a loved one’s health fail and their personality change. There have been cases where people killed themselves or loved ones. Those are rare and extreme examples, caregiver specialists say.

Last year, Russell Flint, 75, shot himself and wife Rosalea Flint, 73, inside their car at Terrace Creek Park in Mountlake Terrace. Rosalea Flint had dementia. Detectives described the Oct. 28 homicide as a suspected “mercy killing.”

Russell Flint left a note for their family: “I just can’t watch Mom waste away and lose what dignity she has left. She has no joy in her life. I haven’t seen her smile for the last three years.”

Caregivers tend to have more symptoms of depression and anxiety than their peers who aren’t caregivers, according to the national Family Caregiver Alliance. However, research has been mixed on the rates of mental and physical health issues. It’s hard to say how much of the strain is related to the actual caregiving because those tasks are mixed with the emotional toll of losing someone, often slowly.

Not alone

Jo Olson, executive director of the Stillaguamish Senior Center, took care of her parents and husband. Her dad had congestive heart failure and her husband had brain cancer. She’s lucky, she said. She knew where to find support.

“With a spouse, it’s really hard,” she said. “You’re caring for someone and he’s not the same.”

That doesn’t stop a caregiver from loving the person they’re caring for, but there are new emotions, too. There can be frustration, helplessness and resentment, followed by guilt.

“Part of it is the changing identity,” Anderson said. “You lose that identity of who you were to that person.”

Olson wants to get information about the support program into doctors’ offices and hospitals.

Caregivers need to know they’re not alone, Anderson said. Companionship can be a lifeline for people coping with the stress of caring for someone and the grief of losing them.

Judy Donoghue is adjusting to life without her husband. The first year after he died, the house was too quiet. It took months for her to be able to putter around without the radio playing.

She’s planning a trip to Ireland in June, where she and Tom Donoghue spent their 30th anniversary.

“I’m just redefining who I am and where I want to go,” Judy Donoghue said.

She has three pieces of advice for caregivers.

Put yourself first, she said, because if you don’t help yourself, you can’t help anyone else.

Admit that you can’t do it alone and ask for help.

The third tip is maybe the most important. “Instead of focusing on what you’re losing, find the moments you can still share with that person,” she said.

That’s why she never stopped taking her husband out to restaurants, even when he forgot to use silverware and dug into meals with his bare hands.

It’s why they never stopped dancing.

Herald reporter Rikki King contributed to this report.

Kari Bray: 425-339-3439; kbray@heraldnet.com

More information

The Family Caregiver Support Program in Snohomish County program is free for unpaid caregivers 18 and older. Resources are available for people caring for a loved one with a disability, chronic or terminal illness or dementia, including Alzheimer’s

Contact: Debbie Cook at 425-248-5276, dcook@stillycenter.org ; or Karen Anderson at 425-248-5156, kanderson@stillycenter.org.