Caregiving and the Invisible Cape

You wear a cape every day. That is what a good friend wrote to me at the beginning of self-isolation after I had reached out to check in on her and wish her a happy birthday.

Interestingly enough, I was surprised by her comment. You see, after a decade of caregiving in the privacy of my own home, I feel so invisible sometimes. While I try to involve Summer in physical activities outside of the house, going out in the community and participating in family errands, my daughter’s most challenging behaviour always seems to be saved for me once we return home and the door is closed.

While my presence online often includes me advocating for caregiver self-care and autism support for my daughter, I rarely share the daily challenges of caring for a child who has an intellectual disability, limited speech and behavioural issues.

When I do share a snapshot of my life via online posts, it usually includes a humorous post regarding Summer’s behaviour as that is my coping mechanism……laughter. Because, if I didn’t laugh at the absurdity of the task handed to me some days, I know that I would simply cry. I can at least release some of the overwhelm through a laugh, a smile and a shake of my head.

Imagine how overwhelmingly depressing my posts would be if I actually shared the bad moments of my reality. Furthermore, could non-caregivers even relate to my experiences IF I wanted to share them?

This is when I try to have compassion as I remind myself that I in fact had no idea of the enormity of the task of being a family caregiver until I had become one myself.

It is quite the double-edged sword. I want people to understand; yet deep down I know that they can never truly understand until they’re living it.

That is why community is so important. My mission is to change the conversation around caregiving to focus on the journey and to celebrate all that it brings us. I believe this change can only be accomplished by connecting with other caregivers like yourself and offering a space to share the reality of our experiences; yet to hold space that is surrounded by hope, support and guidance towards a better experience.

This starts with looking in the mirror, acknowledging that you are wearing a cape and knowing that you are a frigging super hero.

We need to be the ones who see are our greatness first. I know that when you first start looking in the mirror, other emotions and feelings will appear. Remember. You are strong in your invisible cape. You are a caregiver!

Please share your thoughts about your invisible cape in the comments below. Do you agree with me? I would love to hear from you. 

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