Mother and daughter caregiving team reach out with love and compassion

When Emma and Tom Belen decided to share the tragic news of Tom’s ALS diagnosis with their two daughters at a Sunday lunch gathering in March 2011, their eldest daughter, Stephanie, surprised them both. She decided to announce her pregnancy even though she and her husband hadn’t planned on telling anyone before the end of her first trimester. “As you can imagine, tears were flowing,” says Emma, “but Stephanie felt it was important for her dad to know there was this life coming.”

Nothing makes up for the grief of losing her husband to ALS. Nevertheless, Emma is thankful Tom lived long enough to experience the joy of holding his first grandchild and spending time with her during the first year and a half of her life.

In addition to hoping to see the birth of his grandchild, Tom also expressed his desire to remain at home until the end. Between Emma, whose employer allowed her to work from home four days a week, and her youngest daughter, Allison, who was still living with her parents, there was always a family member at home with Tom. “We made it work,” says Emma. “There was so much love for him. We wanted to be a source of strength for him.”

While he was still physically strong enough to leave the house, Tom also found comfort attending ALS Canada support groups. “The support group was like a family to us,” says Emma. In fact, she and Allison have continued to attend groups for caregivers even though Tom passed away five years ago. By sharing first-hand experience, Emma and Allison help other families by offering their personal perspective on sensitive and difficult subjects such as decisions about feeding tubes and ventilators and funeral planning.

Between face-to-face monthly meetings, Emma has also visited caregivers in their homes to provide a break in their routine and answer questions that may not have been raised at the support group.

Along the way, Emma and her daughters have also participated in different fundraising events for ALS Canada including the WALK for ALS, the annual Plane Pull, and a moksha yoga fundraiser organized by Allison. “Losing my husband to ALS did not make the disease go away,” says Emma. “Instead it heightened the importance of continuing to raise awareness about the devastating impact on families and the need for resources to help them through it.”

Emma would like the general public to have a better understanding of the devastating impact of this disease. “If we can do more to educate people about this horrendous disease, then I believe the money will flow in,” she says. “And we can stay hopeful for a cure.” At the same time, knowing how Tom felt, she respects the fact that people may wish to remain private about the extent to which ALS robs them of their quality of life.

For now, Emma continues to do what she can. “If I am able to make a difference to a caregiver to help them understand the challenges of looking after their loved one and find the strength to support them through it,” she says, “then I will know I have contributed to the community in a good way.”