Wayne, caring for his mother

I was the primary caregiver for my mom during her most challenging years as she advanced with dementia. I was a corporate retailer for almost 40 years working as a divisional VP for luxury goods. My corporate role allowed me to constantly travel the world. I was always on the go. It was a wonderful job, and I loved every second of it. However, five years ago something happened that transformed me from a corporate person to an active compassionate community leader and primary caregiver to my mom.

Five years ago, our dog died and two days later, my only brother died of a heart attack. The following Wednesday we moved my mom to a long-term care centre after her dementia was progressing. Ten months later my father was diagnosed with stage 4 lung cancer and passed away 6 weeks after. Needless to say, it was a horrible time. I stopped and thought who was going to take care of mom? It was time I led with my heart and not my head, so I left my corporate job on my own and took on caregiving and it has really been my favourite job.

I had spent my whole career making quality experiences for customers and I wanted to make quality experiences for my mom now. Caregiving is a serious job with constantly changing expectations. I spent two days a week for the past four and a half years taking care of my mom from Toronto. I went out to Calgary four to five times a year spending over 100 days in total there. I felt caring for her was my duty. I wasn’t prepared for it, as everyone, I was just thrown in, but I knew that it was time to parent my mom because she parented us our whole lives.

I attended her health care meetings, discussed my mom’s care with the long-term care staff, took her to the optometrist, bought her clothes, and personal care products. I also managed her investments and her finances. On top of that, cultivated great relationships with the Nurses, LPNs, Social Workers and PSWs at my mom’s nursing home. One of the PSWs that would dress my mom every morning told me that when I’m not there my mom is a part of their family. That really touched my heart. They are beautiful and kind people that took care of my mom when I wasn’t there. I am very grateful to them and some close family and friends who also helped out. I couldn’t do it alone.

Towards the end of her life, my mom had become blind and was non-verbal. I don’t know how she stayed but she did. I told her several times she could go but she held on. I felt all of the emotions under the sun. And now that she’s gone, I miss her terribly. I also lost the job that I came to love so much.

If I can leave some advice, it would be to be an advocate. During the first year of your loved one’s diagnosis or their time in a long-term care home, you are in such an unfamiliar and foreign space. You don’t speak up because you believe the nurses, PSWs, doctors and staff at the long-term care home know better, but this is not always the case. When we initially saw my mother’s dementia getting worse, we took her to see her doctor. He was looking at his screen during the whole appointment telling me and since my mom was taking a different medication, she was showing signs of great improvement. I pushed back and asked the doctor to really look at my mom. I knew she was not doing better.

Don’t give up, stay engaged, be concerned and lead with the awareness that if you raise a concern you will have to follow up to see if it was taken care of, I call it “politely probing”. Caregiving taught me that we have to care for those who cannot care for themselves. It is our duty.

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