How support services are changing

In the wake of the COVID-19 pandemic, our number one priority was to support the safety of the ALS community and our staff, and as a result, we quickly pivoted to moving all ALS Canada office staff to working remotely from home and made changes to our service model to include more virtual and remote support services in place of in-person visits.

Now, with more regions throughout Ontario moving into Phases 2 and 3, many of you have been asking how ALS Canada’s services will evolve. For the foreseeable future, here is what our services will look like:

• Individual support. ALS Canada will be providing virtual and remote support in place of in-person visits. Regional Managers will continue to communicate with people and families living with ALS through videoconferencing, phone, email and/or text. We have received feedback from the community that this model has been working well.
• Support groups. Support groups are now being offered virtually through videoconferencing technology removing geographical barriers, enabling increased participation. These sessions will continue to be offered in this format. For more information about upcoming support groups, please contact your Regional Manager.
• Educational webinars. Webinars featuring a range of expert speakers on a broad range of topics will continue to be developed. Initially, the webinars were created with a focus on the impact of COVID-19 and will now transition to key topics of interest to the ALS community. To access previous sessions, please visit ALS Canada’s archived webinar playlist on YouTube.
• ALS Canada Equipment Program. We will continue to provide mobility and accessibility equipment working in partnership with vendors from across the province with practices informed by recommendations provided by public health experts. We are currently accepting equipment donations prioritizing items of greatest need to our community.

Support services survey results

Given how much has changed in the past few months, in May we emailed a survey to people and families who access our services to collect feedback about the level of support they are receiving during the COVID-19 pandemic. We are pleased to report that:

These have been challenging times and unchartered waters for all of us. Our commitment to innovation and your openness to changes in how we deliver support have resulted in an understanding that the way we support the ALS community and the way in which you need our support had to evolve. Even as COVID-19 restrictions are lifted, we know that the virus is still a risk and that the ALS community is considered a vulnerable population. The health and safety of our community and employees continues to be of utmost importance to us.

With all of this in mind, along with financial shortfalls that will be faced across the charitable sector, we are embracing the opportunity to do things differently going forward. We know that there will still be times when in-person support will be optimal and we hope to reintroduce it for specific circumstances (e.g. someone recently diagnosed with ALS, complex advocacy or support situations that are challenging to discuss virtually, etc.) in the fall, based on consideration of public health officials’ recommendations.

We appreciate your understanding and flexibility as our service model evolves to meet the needs of the ALS community while those needs and the external environment continue to change.

What do you give someone living with ALS to show you care? There’s no ‘one-size-fits-all’ gift that works for everyone, but there are special ways to say “I am thinking of you.” The holiday season can be a perfect time to do just that. We recognize that it’s not always easy to know how to help, so we recently canvassed our regional managers and our online community for their gift ideas. They came back to us with practical suggestions, many of them suitable for someone regardless of where they are in the progression of their disease. Here’s what they had to say.

The gift of time

The gift of time was the number one response from across the board. Gail Renshaw, whose husband, Cliff, passed away from ALS in August, stressed the importance of sharing time together. “The most important thing for Cliff was to spend time with family and friends. Since his diagnosis two years ago, we planned and enjoyed many themed dinner parties to make things fun. ‘Spaghetti Western Night’ was his favourite. Everyone had to come dressed as a cowboy. We watched spaghetti western movies, ate spaghetti, cowboy beans, ribs and corn bread. We made some wonderful memories that we can cherish forever.”

Precious time together can take many forms. It can be a private moment between the two of you or a larger gathering among friends or family. Going out for dinner, or to a sports event or music concert can be a way to maintain connection and enjoy your time together in a different way. When planning a social outing, make sure to consider accessibility if the person you are with uses a cane, a walker, or a wheelchair. A gift of time can also be as simple as reading a newspaper or book aloud if someone you know with ALS is no longer able to turn the pages. Simply offering your company can provide comfort and support to a friend or loved one who is too tired to communicate, but would welcome a caring presence by their side. For the full-time caregiver, offering to spend an hour or so with the person with ALS can also provide some much-needed respite.

The gift of words

Another way to create cherished memories is to help videotape special messages or write letters for loved ones. If someone in your life has ALS and has expressed interest in documenting their feelings, hopes and desires, you could offer to help them by setting up a camera or typing out a message they dictate.

The gift of food

Many respondents also suggested preparing and freezing meals for the family as a way to reduce the load on caregivers. Heather Cockerline, whose dad had ALS, talks about what a relief it was for her parents to have help with cooking meals. “While he was sick, his care was the priority which made meal preparation daunting on some days. What Mom and Dad enjoyed was a steady supply of homemade soups and healthy meals. All they had to do was warm them up.”

The gift of service

The burden of completing daily chores can become overwhelming for a caregiver who is focused on attending to the needs of a loved one with ALS. Relieving some of the stress by offering your services is a wonderful way to help. Some of the most popular suggestions offered by our respondents included snow-shoveling, grass-cutting, babysitting, picking kids up from school, dog-walking, doing laundry, filling out forms, sending emails, and shopping. Housekeeping services were also high on the list, whether it was paid help on a regular basis or an offer from a friend to come and clean the house themselves.

The gift of relaxation

Stephanie Marshall-White suggested offering gift cards for physiotherapy, massage, manicures or pedicures. “My mom recently passed away from ALS and throughout her diagnosis she really liked physiotherapy or massage. I think it would be a great gift to be able to donate an hour of massage or whatever it might be. It really made her feel so much better.”

The gift of entertainment

Carol Skinner, ALS Canada Ambassador and someone who is living with ALS, describes the boredom she experienced as she lost mobility. She also struggles with the physical tiredness that accompanies the progression of the disease. She suggests offering to pay for streaming services such as Netflix, Spotify, or Apple Music to help pass the time. She also suggested smart devices such as smart thermostats, wireless lighting, and wireless speakers and home sound systems that enable a person to control the temperature, lights, and music in the house from their phone without having to get up.

The gift of flowers

Finally, respondents suggested a weekly flower delivery service as a cheerful gift to brighten the house. When you are housebound, a fresh bouquet of flowers every week can be a welcome sight to behold.