In her 15 years working with the ALS community, Sarah McGuire, Director of Community Services at ALS Canada, has seen how the holiday season can bring unique challenges. That’s why Sarah and her team of Community Leads work closely with the people they support ahead of time to anticipate needs and prevent gaps in care. The time of year can sometimes amplify feelings of isolation or disrupt routines, but with planning and support, many families find ways to enjoy the holidays safely and meaningfully.
“This time of year, many people are also experiencing a sense of isolation,” Sarah says. “Maybe they’re not able to get to family, or family aren’t able to come to them.”
In Ontario, ALS Canada’s Community Leads help fill that gap, working directly with people affected by ALS to navigate the healthcare system, troubleshoot care challenges, and provide emotional support, says Sarah.
“They’re a point of contact that can come into the home, build relationships, and become a trusted person within the support circle for them,” she explains. “They’re a friendly face — as well as boots on the ground to help.”
Navigating gaps in care
While Community Leads provide support year-round, their help leading up to the holidays can be crucial.
Often this involves managing logistics, such as finding options to bridge gaps in care when personal support workers (PSWs) take time off, and clinics and equipment vendors close for the holidays.
Solutions could include adjusting a client’s routine to make it easier for their caregiver to handle independently, asking family members for help, or sourcing specialized medical devices.
“If you have fewer hands on deck, sometimes there’s a piece of equipment that can help you get out and about,” Sarah says. “We can work with different health providers ahead of time to figure out a solution.”
Beyond planning for interruptions in care, Community Leads can also help ensure that pre-holiday appointments are booked, and work with health teams to develop emergency plans, strategize ways to make holiday travel or family visits accessible, make home setups more comfortable, and source equipment.
“We ask them, what are your goals?” Sarah says. “Don’t wait — if there’s something you need, let’s get it now.” From these conversations, Community Leads can work with health teams to identify services or equipment to support them.
Planning ahead for the holidays provides more than reassurance; it can mean the difference between a safe and enjoyable holiday and a trip to the emergency room.
“When these services aren’t in place, and a caregiver is trying to handle everything themselves, it can put them both at risk,” Sarah says. “We can see major falls, and we can see injuries to caregivers, like rotator cuff injuries or fractures, from trying to catch someone if they fall.”
Improving quality of life
Sometimes getting extra support can help make the holidays just a bit brighter. For some people, the season is about finding ways to share special moments and pass on traditions in meaningful ways. Even when physical limitations make baking cookies or wrapping gifts impossible, many people use this time to teach family members how to carry on those traditions together.
Sarah recalls one person living with ALS who had been bedridden and unable to speak. Because of his room’s size and layout, most medical equipment and wheelchairs didn’t fit, and he was almost completely confined to his room. The previous Christmas, his wife didn’t put up decorations, since he couldn’t share them with her.
“She didn’t see the point,” she says.
Sarah set up a system to help the man communicate, then worked with healthcare providers to find a specialized lift and wheelchair to fit his space, allowing him to leave his room for the first time in 18 months.
“His wife is planning to put up the decorations again,” Sarah said. “He’ll be able to be in the living room so they can watch Christmas movies and spend time together enjoying the decorations and the spirit of the holidays. That’s a real win for all of us.”