07/02/2026
We talk about family caregiving a lot; it's our mainstay on this page. It's a definite role: caregiver, care partner... From those who give physical care to loved ones, are employed or volunteer as caregivers through to our friends who visit family or friends in facilities and are their advocates; it's a very broad role.
But where are the edges? I know that to me and to many of our friends it's an overwhelming experience. The physical and the emotional impacts can be devastating. I often felt that the Kraken savaged me daily while he feasted on George. That maybe George was just the main course and, once he'd picked his teeth, we would be dessert.
I can remember days, turning into weeks and then becoming months of bobbing about listlessly in a leaky and very flimsy boat. The Kraken stirring the depths with a relentless energy and a wrecker's intent.
Everything seemed negative, there was little to be positive about and no reasons to be cheerful. My permanent status was tired and broken on the wheel.
I know I lacked empathy at times. In the days before I learned to separate George and the Kraken; I unfairly disliked both of them equally. Family stressors and those idle members who found plenty of mean spirited spanners to throw into the works, made an already bad situation much worse.
Were those who decided they could only offer so much and safeguarded what was precious to them right? Faced with a foe such as the Kraken, the natural 'fight or flight' response was bound to kick in. Escape probably was the only truly sensible response; it was fortunate that I've never been big on self preservation and neither has my partner.
Over the three years of family caregiving painting myself into a corner became my specialist skill. People often talk about what they would do differently if they could go back in time. For me, it would be saying no to some of the family's requests sooner, getting outside help in earlier and having more disability friendly adaptations in the house.
Drawing a definitive line in the sand where our roles as caregivers end is impossible. Things are always blurred by the tides of love, obligation and expectation. We sometimes see the city limits of our strength and the outpost that marks the absolute end of our tether on a daily basis. But it's impossible to draw a line that can't be crossed; every day dementia changes the perimeters and no two days are the same. So many caregivers end up burnt out and unwell; exhausted by endless bouts of shadowboxing with an unseen and relentless foe.
Post caregiving it's impossible to draw the line when it comes to grief, self doubt, guilt or regret. By sharing our stories we can try to push back and erase the Kraken's residual territory bit by bit~Gabi
