National Family Caregiver Day: A conversation with ALS Caregiver Jonathan Corber
Jonathan Corber is an ALS Canada Ambassador. After his mother, Wendy, was diagnosed with ALS in February 2016, Jonathan became one of her primary caregivers and stayed in this role through to the end of her journey. Jonathan took some time to connect with us recently to share his experience as his mother’s caregiver for National Family Caregiver Day. Thank you, Jonathan, for sharing your experience as a caregiver with the ALS Canada community.
Could you tell us about your mom, Wendy?
She was the most selfless person I knew, always putting others ahead of herself – her family, her friends, and her clients. Whenever you went to her for advice, she would be happy to share her opinion and help you deal with the situation. She also worked full-time as a Care Coordinator on the Palliative Team at a Community Care Access Centre, and so she had patients who were living with ALS. Her patients would call in the evenings, mornings, weekends, and she would always be happy to answer the call. Although she had been experiencing symptoms for a year and a half, she continued to work until she was officially diagnosed with ALS. Usually she would go visit clients in their home, but after she became sick she would Skype with the doctor and family so that she was involved in the conversation.
What was your relationship with her like?
It was a unique relationship. Even before she got sick I would speak to her numerous times of day, often going to her for advice or just to say hi. It was good to hear her voice. Then when she got sick, if I wasn’t there throughout the day, I would be touching base probably within the hour or every two hours to make sure she was comfortable.
What were some of the responsibilities of being your mother’s caregiver?
I was one of her main caregivers along with my wife and father. I would dress and feed her, assist with her bedtime routine, transfers and toileting. I would also set up and clean her assistive devices, ensure her medication was being taken and that she was comfortable (she would rarely complain). I would also communicate with the physical therapist, occupational therapist and personal support worker, and advocate on her behalf.
How did you balance your role as a family caregiver with other responsibilities and demands of life?
I was able to balance my role as a caregiver by having other people who I felt comfortable with and trusted taking care of my mom. Having my father and wife assist with the daily responsibilities of being a caregiver helped me find balance, as well as having my sisters come in from out of town on a regular basis. I was always thinking of her though, and would call to make sure she was okay when I wasn’t there in person.
What did you find was the most challenging part of being a caregiver?
Balance was the most challenging part of being a caregiver. Everyone needs to find a good balance to care for themselves so they can care for a loved one. I had trouble finding balance and always wanted to be with her to make sure she was getting the proper care.
What did it mean to you to be a caregiver to your mom?
My mom was ALWAYS there for me my entire life, even as she battled the disease. So knowing that I could be there for her and advocate on her behalf gave me satisfaction. It felt good knowing I was able to help improve her quality of life as much as I possibly could.
Do you have any advice or tips to share with other family caregivers?
Be open with one another, whether caregiver to patient or caregiver to caregiver. Also, try to find balance in your own life, because it can take a toll on you and it’s easy to get run down and sick. Then you’re in a position where you can’t take care of anyone else.
How has your experience affected how you approach your role as an ALS Canada Ambassador?
Sharing my mom’s journey makes me feel good and helps with the grieving process. I’m hoping to give other caregivers some insight into how they can improve the quality of life of an ALS patient. My mom always said to be proactive; she was always one step ahead of the game. I want to encourage families to be proactive and advocate for their loved ones. I am excited to be able to be a part of the ALS community. Before my mom passed, I told her that I wanted to support the work of ALS Canada and she was very supportive.