Caregiving for a loved one is complicated. It’s a tight intersection of compassion and caring, expectation and guilt, exhaustion and will. It’s rewarding and frustrating at the same time.

I love my mother. I know she loves me. We say “I love you” to each other every time we see each other. But it’s been a tiring schedule to stick to. So why do I do it? Love, discipline, guilt, a sense of responsibility. The reason is a complicated cocktail of all of the above. During Covid she was one of the few people I saw, outside of my own home and two co-workers. Evening and weekend visits were a nice change, often filled with laughter and interesting conversations. We talked about “the old days”, with stories of her brothers and sister, of her childhood in Italy and her first few years in Canada as a new immigrant. We talked about her ship landing at Ellis Island, in November 1957, on a cold, late fall day, with heels and a not-very-warm coat.

But now that life has returned to a relative normal, it is getting harder to maintain the schedule when there are so many other things to do. The idea of continuing in this manner for many more years to come is daunting and sometimes feels impossible. And with these feelings comes an even worse one to carry around: guilt.

Caregiving for a loved one is complicated and an emotional roller coaster. Lately I’ve been reading about one emotion in particular: caregiver guilt. It turns out I’m not the only person struggling with this issue. In the article “Dealing With Caregiver Guilt” on Today’s Caregiver blog, Malika Brown writes about the reasons caregivers experience feelings of guilt related to their caregiving responsibilities.

“There are two kinds of guilt. The kind that drowns you until you’re useless, and the kind that fires your soul to purpose.”

sabaa tahir, An ember in the ashes

The article outlines a number of reasons caregivers experience guilt.

The first reason is the caregiver is feeling bitter for having to devote time towards being a caregiver. We know that the majority of caregivers are family members, who care for their loved ones without pay or being reimbursed for lost opportunities or leaving their children to go care for their family member. Even though my caregiving hours have diminished over the four plus years, this feeling of bitterness is growing rather than diminishing. The guilt is layered on top of the bitterness because it feels wrong to even think these thoughts.

A caregiver might feel guilt is for having unkind thoughts about the person they are caring for. So often social media posts tell us we should be enjoying and treasuring our time with our loved ones because the days we can spend time with them are slowly dwindling. Personal histories of disagreements and personality conflicts between the carer and the cared for are often magnified and brought to the surface when they spend so much time together.

Another reason for guilt is related to the previous two: feeling guilty for so-called “selfish” thoughts in our minds. Thoughts about not having enough “me time”. Wanting to be anywhere but with our loved one. Wanting our loved one to do more for themselves so they’re not so dependent on us can be prevalent. The idea that other people manage to be caregivers for years and seemingly without complaints makes me think, why can’t I?

You have to accept whatever comes, and the only important thing is to meet it with the best you have to give.

eleanor roosevelt

I try to work through my guilt by talking about it. Laughing about it. Trying to find time in my days for the other things I enjoy. And just accepting that it’s ok to feel bitterness and guilt sometimes. It doesn’t mean I care less about my loved one, bit it’s almost like a validation that the situation is difficult for me.

Am I giving enough? Am I caring and compassionate enough? Am I working hard enough? Am I doing what needs to be done? Am I too selfish? Am I putting my needs ahead of my loved one? I think most caregivers have asked themselves these questions. I have the feeling that for many of us, the answers change from day to day. Some days are good ones, we are calm and generous and compassionate, while others days are not so good. Some days we’re able to give freely of ourselves, while other days we have to reach in and pull it out, because the act of giving of ourselves is overwhelming and draining.

I had always imagined that once my kids were older I would have a lot more time to pursue hobbies and interests, but it seems I am back in serious caretaking mode once again. I am taking it day by day and week by week, taking consolation in my conversations with my fellow caregiver sister and working in my hobbies whenever I can.

Caregiving for a loved one is complicated, so how do you cope with your caregiving responsibilities? Do you have any tips to share with the rest of us?

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