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[I]n the twenty-first century, becoming a caregiver is a transformation that comes at us because today the ‘call to care’ is at odds with the imperative of work and the call to individual achievement. Being a caregiver is not something most people think or dream about, let alone prepare for, even though it’s a role many of us will inhabit, since there are approximately 43 million informal caregivers in the United States and 6.5 million caregivers in the United Kingdom.

When a loved one becomes a caregiver everything changes, including responsibilities, beliefs, hopes, expectations and relationships. Caregiving is always different than we imagine it to be, largely because so few of us think through our care roles in advance. The disorientation associated with these roles can be deep, intense, and isolating because it entails a series of paradoxes, including an ongoing tension that becomes difficult to reconcile: this is a relationship you may not want but feel you must accept.

In the resulting process of transformation, your loved one’s story, your story, your relationship story, and the ‘cure’ story you have mapped out in your head can betray you when what happens isn’t what you thought would happen – or should. It’s as if someone steals the script you have been working from your whole life through.

Read more on Open Democracy.

Written by Donna Thomson
Donna Thomson began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author, consultant and writer. Donna is the Special Advisor for Caregiving at Tyze Personal Networks and is the International Advisor to the PLAN Institute for Caring Citizenship. She is the co-founder of Lifetime Networks Ottawa, a PLAN affiliate and is a member of the Cambridge University Capability Approach Network. Donna is also an instructor at the Advocacy School (Ottawa, Canada), teaching families how to employ best practice political advocacy tools when advocating for care. Donna holds degrees in Fine Art (Theatre), Education and Theatre in Education. Donna’s interest in new modes of social engagement for marginalised families led her to sit on numerous boards, such as the London International Festival of Theatre, Women for Women International Leadership Circle and Dovercourt Community Association. Donna has spoken on disability and family wellbeing extensively, including at the London School of Economics, the Skoll World Forum, and the International Centre for Evidence in Disability.

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