I am not a Florence Nightingale. I'm just a caregiver trying to do my best

This First Person column is written by Sushila Samy who provides care to her husband in Beaumont, Alta. For more information about CBC's First Person stories, please see the FAQ.

My husband has an unwanted companion — an inflammatory bowel disease called ulcerative colitis — that has been with him for over 30 years. It creates a burden on me, too.

When Canadians think about caregiving, I think we imagine a perfect Florence Nightingale selflessly checking on patients in the dead of night. My reality is far different and I am not always perfect. 

As the spouse and caregiver, I go through a rollercoaster of emotions and I struggle with feelings of worry, irritation, sadness and guilt. I fear that I'd be judged as selfish or uncaring.

My husband and I are both retired. We enjoy the simple pleasures of life — cooking, watching movies, gardening and spending time with friends and family.

Our lives follow a pattern; I take care of the finances while he maintains the cars and the house. We share the cooking and cleaning. That still works when he is in remission. But when he has a relapse, I take on all the responsibilities. 

Last year, he had a bad flare up and none of the medications were working. He had terrible stomach pain, diarrhea and bleeding which left him exhausted. So I prepared the food, ensured he had his medications and took care of the household.

One evening, I was cleaning the kitchen after making and serving his evening meal. It was my last chore of the day, and I was already thinking of my large beige chaise with the embossed flowers. I was dreaming of how I was going to stretch out into it with a hot drink and a book. 

I made our drinks of Ovaltine and took them to the TV room. He was sleeping, covered with the quilt and the blanket I had put over him. I put one mug on the TV table by his couch and the other by my chaise. 

I sank into the chaise and stretched my feet, picked up the pink fleece throw and covered myself. I glanced at him; he was breathing evenly and still sleeping. I was so comfortable; I felt I could not move an inch.  

I took a sip of my hot drink, picked up my book, The Nightingale, and sank deeper into my chaise. 

But I had hardly read the first page when he woke up and said he was very cold and in pain. He asked me to warm up the magic bag — a heat pack, which I had already warmed four times that evening.  

The warmth of the magic bag comforts him when he is in pain. But I was annoyed. 

I snapped, "OK."