Husband. Partner. Lifelong friend. Grace had known Randy since he was a teenager, and over time he had become all of these things to her. The couple had been married for almost 50 years before Randy passed away from ALS in March 2016, and Grace recounts that they had built “a beautiful life” together in the years they had.

Grace and Randy never shied away from the challenges that life threw their way. They had two children, a son and a daughter. When their daughter was born, they discovered she had a rare and serious condition called Prader-Willi Syndrome, and would need constant care throughout her lifetime. It was recommended that she be institutionalized, but Grace and Randy made the conscious decision that they would care for and love her no matter what. Grace firmly believes that their lives were enriched every day because of their daughter and she never abandoned these values when she became a primary caregiver for her husband in September 2015. While she acknowledges the difficulties of being a caregiver, and knows that not everyone is in the position to be able to provide care at home, she says she was never burdened by her role.

There is no doubt that caring for someone with ALS comes with its challenges. Grace recalls that she had shattered her leg around the same time that Randy had lost his mobility, but his needs took precedence over her own.

“I was exhausted and sleep deprived,” she recalls. “I couldn’t leave the house very often because he needed me 24/7. When you’re unable to do things for yourself, you rely on others to carry out even the smallest tasks. But it was my pleasure to do it.”

When Randy’s condition had progressed far enough that he was no longer able to go upstairs, they set up a hospital bed on the main level with help from ALS Canada’s equipment program. They found ways to adapt – for example, Grace continued to sleep upstairs, but whenever Randy needed her, he would turn up the volume on the television to signal that he needed her help. Grace chooses to focus on the positive and shares that being a caregiver for her husband was as rewarding as it was challenging.

“The most rewarding part for me was being able to give my husband my total love and support,” she expresses emotionally. “As difficult as it was for me to see him like that, I know that it was far more difficult for him.”

Grace describes her husband as the kind of man who loved to be outdoors and spend time with others. He was so loved by the community that friends, family and neighbours rallied together to help when he was diagnosed, offering to do groceries, cut the grass and clear the snow.

“People commented that Randy had brought such joy into their lives,” Grace shares. “He was so kind and he helped so many people. This was their way of giving back.”

One of Randy’s dreams was to build fairy gardens at the couple’s trailer in the forest for children to enjoy. Before they could begin, Randy was diagnosed and the pursuit was eclipsed. Their adult granddaughter, Emerald, decided to paint a fairy door to represent her grandfather’s dream, and Grace had hoped to share one more season with her husband (and the fairy door) at the trailer. Randy passed away before the dream could become a reality.

Grace expresses that both she and her husband had strong faith. While the end of their time together is not what either of them would have chosen, she believes that they were able to live with dignity and respect. Rather than dwelling on the negative, Grace decided to publish a children’s book, Journey into the Forest, about a whimsical forest to honour her husband’s memory, and to donate proceeds from the book sales to ALS Canada.

“It’s the small things that I miss,” she reflects. “I miss the chance to have a cup of tea with my husband and just talk with one another.”

Grace encourages others going through an ALS diagnosis to reach out to other people for support. Seven months after Randy’s passing, Grace joined a grief support group where she met other women dealing with a similar loss. “When you lose someone you love,” she says, “it doesn’t matter what they died from.” Grace continues to attend those support groups today, and says that sharing her grief has provided her with a network of support that carries her through her darker days.

During the month of June for ALS Awareness Month, we will be sharing the stories of people living with and affected by ALS who have chosen to seize each day in whatever way they can. You can also share your own stories and reflections on Facebook, Twitter and Instagram and hashtag #SeizeTodayALS.

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