how i care for als: 'we have learned to be better at accepting help from others'

michael fairweather was planning to enjoy a carefree retirement — and then his wife, mary jo, got als.

by robin roberts

published oct 09, 2023

last updated feb 01, 2024

7 minute read

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7 minute read

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how i care for als: “it’s helpful to be adaptive and flexible”

michael fairweather says his wife mary jo, who lives with als, keeps her spirits up by watching funny videos or comedy shows. supplied

michael fairweather traveled widely and often for his job working for an international energy company. so when he recently retired, his plan was to stick close to his calgary home and family and, as he says, “change my pace of life.” his wife, mary jo, had already retired early from her job at the calgary horticultural society. they were an active couple — kayaking, skiing, walking, and spending time at their summer home in new brunswick — so they were eager to do more of the same now that they had more time.

but one day in 2021, mary jo struggled to get out of her kayak. then she noticed her foot wasn’t strong enough to press the pedal on a garbage bin to open the lid. later that summer, while at a country market, she slowly collapsed to the floor. “people helped me pick her up and she was fine, but it was not a regular fall; it just looked different to me,” says michael.

when other different things kept happening, they decided to see a doctor. multiple tests later, in january 2022, just weeks after her 65th birthday, they received the diagnosis: mary jo had amyotrophic lateral sclerosis, or als. michael remembers clearly the day in the doctor’s office when they got the news. “i just went numb. i couldn’t participate in the conversation with the doctors anymore, it was so overwhelming.”

learning about als

but his first instinct was to comfort his wife, who was very upset. he says neither of them knew much about the disease, other than that patients lose control of their limbs. they would soon learn it was much worse. als is a motor neuron disease that causes progressive paralysis when the brain is no longer able to communicate with the body’s muscles, according to the als society of canada. as the muscles break down, patients eventually lose the ability to walk, talk, eat, swallow and breathe.

in about 80 per cent of cases, als is fatal within two to five years of diagnosis, although many people live decades longer. the exact cause is not fully known, and there is no cure. the main type of the disease is called sporadic, which targets people of any gender, ethnicity or age, although it typically strikes people between the ages of 40 and 60. (mary jo has the sporadic form.) the other form is familial, meaning it is inherited, and affects only 10 to 15 per cent of cases.

a few weeks after the diagnosis, the couple’s first stop was at the als clinic at calgary’s south health campus, where they met with specialists who prepared them for what was to come. they also learned about resources, such as the availability of a physiotherapist, occupational therapist, respirologist, and an equipment loan program, which they would soon avail themselves of. as the disease has progressed, mary jo’s legs have further weakened, to the point where she at first used walking sticks, then a walker, and now a motorized wheelchair on loan for use inside, and another that michael purchased for use outside.

life as a caregiver for als

as her primary caregiver, michael’s day is full. in the morning, he moves her out of the hospital bed they’ve installed in their bedroom and into the bathroom with the help of a hoyer lift, a mobility device that helps transfer patients from one point to another. after he gets her showered and dressed, he wheels her into the kitchen where he makes and serves breakfast.

he then follows the physiotherapist’s instructions for moving mary jo’s limbs to prevent them from seizing, and then gets her settled in her chair with a book before cleaning up the kitchen. soon it’s time to prepare and eat lunch. then, once she’s again settled and comfortable, michael takes a nap or some quiet time to himself to read or catch up with family. he’s also practiced qigong, similar to tai chi, for several years and tries to fit in an online session each day to re-energize.

later on he’ll do laundry or pop out to the grocery store or drug store to pick up prescriptions. while there are three health canada approved therapies — edaravone, albrioza, and riluzole — for als, mary jo is on none of them, since her decline has been too steep to benefit. she is only on drugs to help with painful muscle cramping and seizing.

in the evening, after michael has prepared and cleaned up from dinner, the two of them will relax in front of the tv for about an hour, then, around 11 p.m., it’s time to get ready for bed. after mary jo is asleep, michael stays up for about an hour to read and catch up with emails, then he starts setting up for the next morning’s breakfast, when the routine begins again.

michael doesn’t consider his care for mary jo to be heroic. “i moved many times, domestically and internationally, with my family during my career,” he says. “we probably developed skills related to adapting to change and uncertainty, to become more resilient to supporting each other that might be coming into play as i now support mary jo. although we became quite self-reliant as we moved to different places, more recently we have learned to be better at accepting help from others.”

a home support worker now comes twice a week for about five hours each time to help mary jo with her physiotherapy and other needs. neighbours will often stop by on their way to a store to see if they need anything.

michael says mary jo keeps her spirits up by watching funny videos or comedy shows. “and sometimes we go out but it’s a challenge in winter. this is a good time of year to go to a market close to us where there are familiar vendor faces, so we’ll stop to chat, have coffee. we don’t plan activities days or weeks ahead anymore. if she is feeling well enough on the day, we’ll go on an outing. we approach each day as it comes.”

preparing for the future with als

to prepare for the future, an occupational therapist recommended alterations to parts of their home, including the bathroom. mary jo’s wheelchair can make it through the door but not into the shower. so they hired a contractor to make the renovations. they also installed a motorized wheelchair lift, on loan from the als society, that helps mary jo from their home’s main floor to the garage.

to connect with others living with the disease, both michael and mary jo access the als society’s support groups over zoom. “every couple of weeks mary jo participates in a two-hour zoom call for als patients,” says michael. “she enjoys the people she’s come to know there. once a month there’s one for caregivers but i haven’t done it lately. i think it’s useful, but i don’t participate as much because of schedule conflicts.”

as for advice for others who find themselves in a caregiving role, he says, “it’s better to be prepared before you need something, like a walker or a cane or a lift, rather than try to catch up later. when mary jo lost the use of both her legs, i got the hoyer lift. i had to try and figure out how to use it right away, whereas it would have been better to have had it ahead of time.

“it’s also helpful to be adaptive and flexible, and to have a backup plan if there’s an equipment failure, or if there’s a change in your loved one’s ability. we have different wheelchairs so if one stops we have a power wheelchair. if both stop, i have one to push.”

recognizing the needs of the caregiver

a serious disease affects not just the patients, but everyone around them, especially the caregivers. the toll it takes, physically and emotionally, can be immense. they can experience exhaustion, depression, hopelessness, helplessness and eventual burnout. they may even become ill themselves. which is why it’s vitally important that caregivers are cared for themselves.

taking time out, whether it’s going for a walk, visiting with friends and family, going to a gym, getting a massage, even seeing a therapist to unburden themselves and learn coping strategies, restores their energy and wards off mental and physical breakdowns. a healthy caregiver is an effective caregiver.

according to the canadian centre for caregiving excellence, one in four canadians is a caregiver; one in two will become one. nearly eight million canadians provide about 20 hours a week of unpaid care. that work amounts to 5.7 billion hours, valued at $97.1 billion annually. a further $1 billion is lost in productivity every year, equivalent to more than half a million employees dropping out of the workforce.

the centre warns that we are in a caregiving crisis, and continually lobbies federal and provincial governments to develop a stronger support system, including financial aid and leaves of absence protections.

michael says he’s connected with caregivers alberta, which offers programs and events specifically geared toward caregivers, including educational and respite-focused in-person workshops, as well as online webinars designed to provide supports and other resources, including advocating for caregiver-friendly workplaces.

“look for organizations in your area that could be a resource,” michael advises. “the als society of alberta has been so helpful for us, and they could be for others.”

robin roberts is a vancouver-based writer.

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