I accompanied my mom through the extremely difficult journey of dementia. My mom died 8 years ago. During that time I learned so much about the challenges families face on this journey and I learned even more about love.

I had the complex role of caregiver, advocate and daughter. I walked side by side with my mom through her illness and was committed not only to her care but also her dignity and independence.

Walking side by side meant so many different things; doctor’s appointments, hospital stays, outings, reminding her who her children were, nursing homes, healthcare decisions, overwhelming and complex grief as my mom no longer recognized me and burnout.

I hovered protectively over my mom as her capacity diminished almost daring anyone to treat her with anything less than kindness, respect and dignity. It wasn’t easy and it broke my heart a million times but as many things in life I couldn’t possibly have done anything else.

My heart was and is still intricately connected to my mom’s heart.

Our hearts beat as one in the beginning of my life and it beat as one at the end of her life.

I had never really heard her breathe.

At least not until the last 5 days

when her breathing was all that

really mattered.

Sleeping on a cot at the end of her bed.

I matched my breath to hers in the

hope that if I kept breathing

she would too.

Since my mom’s death I’ve been able to reflect on my mom’s illness and grieve her passing. It’s expanded me in a way that I can’t even begin to explain. Apart from the very arduous and all consuming every-day demands of this life-limiting condition there is an emotional component that I don’t believe anyone can ever be fully prepared for.

Dementia cracked my heart wide open. What I began to notice as time went by was that my heart began to open to my mom in a way that I was not prepared for. My relationship with my mom was complicated and for the most part I would say my heart was closed to her.

It’s impossible to watch someone go through dementia with a closed heart.

Towards the end of my mom’s long battle with dementia she didn’t know if she was my mom or I was her mom. She would hold my face in her hands and say, “do you know who I am” and I would say “yes you’re my mom” and she would respond with “and you’re my mom”.

The roles didn’t matter anymore because there was so much love.

I’ve often said that dementia took my mom’s mind and opened my heart.

I never knew I was capable of so much tenderness and so much heartbreak. Our lives are designed to crack us open and they will. We will resist that opening in so many ways because it hurts and it’s vulnerable and it’s messy but in the end love will have us because love is who we are. 

If someone you love has dementia and you are in need of support please inquire into my private sessions.  I would be happy to support you.

All of Candace’s services are Trauma, PTSD, Complex Grief, Chronic Illness and Benzo withdrawal symptom sensitive.

Candace Kirby, Counsellor

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