I never truly understood the word ‘caregiver’ until my husband was diagnosed with ALS | Canada Voices

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By the time Daniel’s electric wheelchair arrived, I was pregnant with our son. We were so happy and excited to be parents, our hearts were filled with joy, but the arrival of the wheelchair was a reminder that our time together was disappearing.

I used the word “caregiver” many times before my husband was diagnosed with amyotrophic lateral sclerosis, ALS. With his diagnosis, I learned that I did not truly understand the meaning of the word, not until several months after I was told I would be his caregiver.

My husband was 45 years old when he died and I was his caregiver for the last years of his life.

ALS or Lou Gehrig’s disease is a disorder that causes the loss of motor neurons that normally control the muscles in the body. The patient loses all control of their body but the mind and awareness of what is happening is not impacted. Some cannot speak or swallow, but for some reason my husband was able to speak and eat to the end.

One may think that the weight of having to do everything for someone else can be difficult. ALS robbed Daniel of his ability to get dressed by himself, put on his shoes, walk, shower and feed himself. For me the physical aspect of caring was easy, as I was young and strong. It was the emotional side of the caring that became excruciating and painful. Daniel had an incredible spirit. He was so loving that even in the worst days, I felt I was the luckiest woman on Earth. He made me laugh every day and our house was full of joy. But we both knew that we had to make the most of every moment we had together. ALS had spread a dark shadow over our future.

Doctors had told us that a young person diagnosed with ALS could live for three to five years and that the debilitating atrophy of the muscles would continue. Daniel was falling down as he was trying to get up the stairs in the house we lived in so we moved to an apartment. As time went on, he needed leg-braces and then a walker. I was afraid he would fall in the bathroom so we installed a seat in the shower and an elevated toilet seat to help him get up. As his muscles deteriorated further, we received an electric wheelchair from the ALS Society of Canada.

Every day that I cared for my husband I was not able to see how his body was changing. I was too involved in the process of living each day and completing daily tasks. Every moment we had together I felt more in love with him, his mind and his spirit. In turn, every step and every new tool was a surprise, a blow to my heart.

During an appointment the doctor suggested that my husband would have to take anti-depressants and sleeping pills. I knew Daniel was dealing with a lot – he was not afraid of dying but of leaving his wife and son alone. It was painful for him to think that he would not be alive when we needed him. We talked about the doctor’s suggestion. The time we had together was so special to us that for Daniel to take a pill to manage the pain but not be able to feel as much, was not an option he was willing to accept.

We cried a lot together but we also laughed. Sleepless nights became an opportunity to hold each other in bed. We knew that most likely he would die in his sleep so we spent hours together as if that would be our last night. We realized that it was not what we were feeling that needed to change, rather, it was the ability to make every moment in life precious with all the energy we had left.

Nobody knows when they will die. The only difference between everyone else and us was that we were living with a debilitating disease. That’s when I understood the meaning of caregiving. It’s when someone needs you physically and emotionally to have a life with purpose, to feel loved. I helped my husband live with dignity and intention and I know he felt loved each day that we had together.

A “caregiver” knows life is precious and that every moment has to be cherished, but this is hard on the heart. I felt the fragility of life for the first time and I had to look at what it meant to lose someone you love. My experience caring for my husband completely changed me. Daniel’s love and joy for life opened my heart completely, and he made me a caregiver, a writer and a mom.

A few days after Daniel died, a technician came to pick up the electric wheelchair. It was the last piece of equipment that reminded us of the disease but it was painful to let it go because it also embodied the life we once had together.

Dr. Daniel Timmons, PhD, died in his sleep in 2005. Our son is in his third year at university.

Sunny Fernandez lives in Toronto