My husband got sick and the burden of care landed on me. I'm not always selfless

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." 

He picked up on my tone immediately. 

"Sorry, I am causing you so much trouble." 

His words, rather than making me feel better, made me feel guilty and I immediately regretted my tone. I went downstairs and put the magic bag in the microwave. 

As my irritation dissipated, I was able to think.

My husband and I love and care for each other a lot. He has good days and bad days, sometimes good and bad months. On his good days, he still makes me laugh with his crazy jokes; we cook together and go for long car rides.  

When I went upstairs, my husband was sitting up. I gave him the bag and a kiss. He smiled and thanked me. We got ready to watch a movie.

This is a long journey. I have learned that caregiving brings with it a myriad of complex emotions.

I have found it easy to talk about my physical health but not my mental and emotional wellbeing. Now I'm coming to understand that I am the only one responsible for my emotions and I can choose how to deal with them. 

By sharing my feelings with those close to me, they have come to better understand the difficulties I face in providing care. I'm learning that it is OK to express my feelings, that I am not violating any caregiving code. I realize that I am the harshest critic of myself and I do not have to be perfect. This has been so freeing for me and my feelings about providing care have changed. 

The CBC team in Alberta is focusing this month on family caregivers — the husbands, wives, children and others who take on care of loved ones. Visit cbc.ca/familycare to read more.

If you have a compelling personal story on this topic or others, the CBC First Person team wants to hear from you. Here's more info on how to pitch.