Working together to help as many people as possible
For 10 years, I stood by my husband, who was diagnosed with the cruel degenerative neuromuscular disease amyotrophic lateral sclerosis. ALS causes muscle atrophy in the arms and legs. Eventually, the person can no longer walk, use his hands, feed or dress himself; in the end stages, he stops talking, eating, and, finally, breathing.
The diagnosis was a challenge for me and my husband; we weren’t at all prepared to deal with it. Overnight, our lives were turned upside down—his as the patient, and mine as his wife, suddenly thrust into the role of caregiver.
You see all your hopes and dreams go up in smoke, and then you slowly start losing your freedom, until you find yourself planning your life around his needs. The disease can take anywhere from two to five years to claim its victims; how long will you be able to bear your new responsibilities?
I think we were very emotionally strong not to give up from the outset. We cried a lot and talked for hours about how the disease was going to progress. We realized that we had to take things one step at a time.
The CLSC was there from the start to meet our physical needs and to refer us to other professionals as the disease raged on. Thanks to their palliative care team, I was blessed to be able to fulfil my husband’s wish of dying peacefully and with dignity in the comfort of our home, surrounded by his children and bathed in our love.
The ALS Society was a very valuable source of psychological support, as well as information about the disease. We got involved with the ALS Society from the first fundraising walk, because we wanted to do our part to advance the research, but also support the ALS Society in providing more services to patients and their family members. We participated in all the walks, helping to educate many people about the disease.
We also attended many information sessions, which the ALS Society holds monthly. This information was precious to us and it helped sustain us through the process.
My husband wanted to meet other people with ALS, to talk to them about their feelings and experiences with the disease. He shared with them his love of life and his determination not to give up. His philosophy was to take one day at a time and to live fully in the moment.
The network is there to allow us to vent our frustrations and to help us keep moving forward. You learn to live with the losses and put them in perspective.
I know that spending time with other people touched by ALS and sharing our stories with them was very good for us on our journey toward the ultimate loss: the death of a loved one.
Today, I’m still involved with the ALS Society as a mentor for patients and family members. As part of this extraordinary new service, I had the opportunity to get to know a woman who lived alone and needed help. Her beautiful smile and her bright blue eyes spoke volumes about what she was feeling, despite the fact that she was no longer able to talk. She left our world very peacefully, like many others with this horrific disease.
I believe it’s so important to work together to support as many people as possible living with amyotrophic lateral sclerosis