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A journey with ALS: Care for ALS patients often falls to spouse

Focus on today. Not tomorrow and not what’s coming. It’s the only way Nicky Vaillancourt says she can sleep at night.

Two years ago, Nicky’s husband, Serge, was diagnosed with Amyotrophic lateral sclerosis, or ALS, an incurable and rapidly progressing neuro-degenerative disease that attacks and paralyzes muscles in the body.

It started with twitching and muscle loss. Now he spends a lot of his time in a wheelchair.

It’s hard enough to watch the person you love die, Nicky says, but caring for him while it happens is the cruelest part of all.

She feels the weight of responsibility to keep her husband alive and give him the best quality of life she can, “but when you are seeing the person you love struggle … mentally they are still the same person, they are still all there, but their bodies are basically dying and there’s nothing you can do, it’s absolutely … it’s devastating,” she said, her voice trembling as she holds back tears. “It’s emotionally and physically and mentally draining and it’s difficult because – knock on wood – I am still hoping for a cure but I know what the reality is and it is …overwhelming.”

She cries a lot when nobody is around, mourning the loss of things he can no longer do. She gets frustrated and angry when he has a bad day, heading out to the garage just to kick the garbage can. And she gets scared. Some days she questions if she can handle the gradual loss of her husband. She hopes and prays for the strength to cope, she says.

It’s a roller coaster of emotions.

“You have to try to focus in on the good things and try not to think of all the negative things. It’s a challenge and some days are bad days, some days are depressing and you cry a lot and it’s upsetting. Then the next day ... it’s like that was a blip and we are OK again.”

Caregivers face a burden when it comes to care from the emotional to the financial, according to the ALS Society of B.C.

Equipment alone can cost the average patient more than $130,000 and the federal government provides little financial support to those who need to stay at home to care for loved ones. The ALS Society of B.C and ALS Canada are pressuring government to provide better compassionate care benefits.

While parents can access 52 weeks of pay to remain at home with new babies, those caring for loved ones with a terminal illness can only get six weeks of support – and not without first proving the person has only six months to live, said Wendy Toyer, executive director of the ALS Society of B.C.

“So at the end of life, we are not caring for people like we are in the beginning of life,” she said.

The ALS Society of B.C. was created in 1981 and generates more than $2 million a year to provide services like equipment loans and a psychological support program. The hardest thing for caregivers is not knowing how long they will be providing care, Toyer said.

“When you stand at the altar ... and say you will love this person through sickness and in health, no one knew you were going to have to become a nurse 24 hours a day and sometimes for years and years and years without a break,” she said. “The caregiver has a huge burden because they are seeing the person they love, in most cases a spouse, deteriorate, but there’s also the exhaustion of having to be there all the time and care all the time.”

Taking care

With plastic gloves Nicky finishes mixing a mug of liquid meal supplement. She gently pulls at the shoelace around her husband’s neck that holds his feeding tube and lifts his shirt. He holds the plastic for her while she gives it a rinse. It’s a team effort.

They smile at each other, while she draws the mixture into a syringe and gently injects it into his stomach. She’s slow and gentle. Too fast and he could throw up. There she says, “at least now you have something in your system.”

Feeding her husband through his new feeding tube has been one of the tasks Nicky has taken on since Serge was diagnosed with ALS in 2012. She’s also found herself picking up other things she didn’t do before: handling the family finances, dressing her husband in the morning and searching for recipes for food he can still swallow.

She has become the primary caregiver, with the hope of keeping him at home for as long as possible. It’s the best place for him and where he wants to be, Nicky says. But she knows it won’t be easy.

“When I start thinking of what’s coming and the possibilities ... it’s too much. Emotionally, mentally. I can’t deal with it. Some days I just feel like, am I going to be able to cope with it?” she said. “But I will cope with it. I have to cope with it.”

It’s a comfort to know the ALS society is there to help, she said. They provide a pool of equipment on loan, from an electric wheelchair to lifts that get him out of bed. But the biggest help is reminding herself to take just one day at a time. Just focus on today. Not tomorrow and not what’s coming.

This is the second story in a four-part series on ALS, which included Serge's story; The search for a cure; and Vaillancourt earns award for work for ALS awareness.

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