When my husband, Don, was diagnosed with ALS in 2021, one of the things I immediately felt was that I was no longer in a safe space. Don had been my anchor since we met when I was barely 20 years old. If I had a bad day and couldn’t give 100%, he’d take over the rest. That goes away when you become a caregiver. You always feel like you must be at 110%. I had another caregiver tell me once, “I just keep moving, because if I stop to rest, I might fall over,” and that’s nothing short of the truth. Long before ALS takes your loved one from you, you have already begun to lose them. You lose dreams about the future; you lose everyday normalcy, and suddenly you’re thrust into this very scary and uncertain place.
MAID (Medical Assistance in Dying) is often used in the context of people opting for it due to lack of support and resources. However, there are several individuals living with ALS who opt for MAID because they want to. MAID is sometimes referred to as “dying with dignity,” and some choose this option to say that they have had enough and that they are ready to end their ALS journey on their own terms.
Don chose to opt for MAID within hours of diagnosis. He has a demarcation point of what he is willing to lose to the disease and what he isn’t. Don focuses on quality of life and not quantity. He wants to be supported by his caregivers but doesn’t want to rely on them – he does not want to be fed or dressed, live in a wheelchair, use a feeding tube, or rely on breathing assistance. He wants to live independently. He is focused more on his family than himself. He doesn’t want me to give up my career or strain our family finances for things that he believes are short–lived.
As far as caregiving goes, Don’s decision to opt for MAID changes things. I don’t have to provide care in the most traditional sense. My level of caregiving involves taking on all of the family and household responsibilities and maintaining income for our family. I have to be a lot more creative because I’m not trying to sustain his life, I’m trying to sustain his independence because when that is gone, he will be too.
When people think about someone close to death, they don’t imagine someone who is able to walk around the house, eat normally, or talk and breathe without assistance. Everything people tell you to prepare for with ALS are things that our family will never experience. We have to prepare for things such as when he will choose to die. I am prepared for him to die soon. Others still see him as having a long way to go.
As humans, we tend to look for similar stories or experiences to relay our fears and make us feel less alone. When I went looking for stories, I found many. However, I noticed that the published stories were so different from the lived experience of many of us. These stories were positive. They talked about taking early retirement to be together, completing bucket list items with their families, running one last marathon, writing a book, and even getting married. They didn’t talk about anticipatory grief, financial hardships, losing your spouse before you lose them, or worrying about an uncertain future. It made me feel like we were dealing with it all wrong. That is until I got involved in several areas of advocacy across Canada and started to meet more people going through the same thing we were. I remember meeting another woman whose husband had been newly diagnosed. She reached out to hug me while shouting through tears, “You understand it, you’re the first person to understand it.”
I want people to remember that not every family’s experience facing ALS is the same. There is no right or wrong way to do this. There is no playbook. We may all be in the same storm, but each one of us is navigating it in a different vessel.