TAUREEF MOHAMMED

A CAREGIVER'S story is one of those stories that needs to be told. Sally's story, although fictional, was inspired by my encounters with caregivers.

'And how have you been managing?' the geriatrician asked.

Up until the question, Sally had appeared to have everything together. She had a pen, notepad and a type-written list of the dozen medications her father was on. She had other important documents - blood results, prescriptions, notes from previous visits - in a plastic envelope which she took to every doctor's appointment. And her father, who had advanced dementia and had lost the ability to do basic activities of daily living like dressing, looked impeccable.

But now that she was separated from her father - who was busy in another room doing the Montreal Cognitive Assessment exercise with the geriatric nurse - and now that the focus shifted to her, she felt no pressure to make everything appear fine. So, when the doctor asked the question, 'How have you been managing?' she broke down.

She had a full-time job and a family of her own - both had seen less of her over the last year. She was contemplating early retirement. Her father moved in with her a year ago, not long after her mother - her father's previous caregiver - died. As she rattled off her daily duties, those that involved her, her job at the university, her children, her father - just saying everything out loud lightened up the weight a bit - it became clear she had at least three full-time jobs.

She had siblings, but every time their father's care came up as a topic, the discussion always turned into an argument and the conclusion was always the same: it is what it is.

To make matters worse, she felt many people didn't have a clue what 'it' was. Having read the brochures from the Alzheimer's Society and completed the online training classes for caregivers of people with dementia, she knew dementia was not 'normal' ageing. She knew that caring for a person with advanced dementia required skilled care, a lot of attention, money.

And because she knew dementia was a disease that required special care - just like heart failure and kidney failure - she knew her faith, which said to honour your parents, was not enough to lean on. She needed help from other family members; she needed help from the healthcare system; she needed help from society. When it came to faith and love, she had enough to share.

And when she was finished telling her story - making sure to point out it was not all doom and gloom, that there were moments when she felt she would not swap her role for the world - the doctor diagnosed her: she had caregiver burden. And to stage the level of burden - none, mild, moderate, high - a social worker asked her 12 direct questions about her feelings, a process called the Zarit Burden Interview. On a scale of one to four, she graded each feeling. And with a total score of 30, it became clear why she broke down: high caregiver burden.

Unpaid caregivers like Sally do more for a functionally-impaired person li