They say with Alzheimer’s, you lose someone twice.
First, when they begin to forget, who they are, who you are and all the moments that shaped your life together. The emotional and mental connection begins to unravel. Names slip away. Stories become scattered fragments. Recognition fades. Eventually, even a glance or a smile feels unfamiliar. Communication becomes fractured, then falls silent. You search their eyes for something, anything that says I remember you. However, more often than not, you come away empty handed.
The second loss is the physical one, when the body follows the mind. When they can no longer walk or feed themselves. When even a simple gesture or word becomes impossible. Their decline becomes a kind of slow vanishing. You find yourself standing at a painful crossroads, holding memories in one hand, while watching the person you love slip further away in the other.
In May, my brother-in-law died, after a rapid and painful decline. His Alzheimer’s had already begun reshaping our expectations of time with him, but the cancer diagnosis hastened everything. What started as occasional forgetfulness became disorientation. Then came wandering, confusion and eventually the complete loss of speech and mobility. It felt as if we were losing pieces of him day by day, until there was little left but a shell.
He was a complicated character, prickly at times, full of contradictions. Relationships with him were layered and not always easy, but he was ours, part of the fabric of our family, a thread in the tapestry of our shared lives. His presence mattered and now his absence echoes through us.
What often goes unsaid in stories like these is the immense, quiet and often unacknowledged work of caregiving. In this case, my sister bore the weight of it, she became his advocate, his voice, his nurse, his anchor. Her world narrowed to his needs. Every decision revolved around his care. Her identity slowly became tethered to his illness. There was no clocking out, no break room, no applause.
And when he died, she didn’t just grieve the loss of her husband, her life partner, she grieved the loss of her role, her rhythm, her sense of purpose. That gaping hole where “we” once lived became a chasm of what now?
This experience has served as another harsh reminder of how fleeting and fragile life really is. We are so quick to postpone joy. We delay rest. We hold off on dreams, waiting for a better time, next year, when work slows down, after the kids grow up, when we retire.
But sometimes, that time never comes.
So I’ve made a quiet pact with myself, a kind of personal manifesto. Maybe you’ll join me?
Be present. Love the people in your life, even when it’s messy, even when they’re complicated. Forgive quickly. Say the words that matter. Recognise and honour the incredible work of carers, their strength, resilience, and grace. Live now. Not when it’s convenient, not someday, next month, in a few years….
Life isn’t a dress rehearsal. There are no retakes. No pause buttons.
So grab hold of it. Live. Fully. NOW!
“You are not promised tomorrow. So live today as if it’s your last, love like you’ve never been hurt and dance like no one is watching.”— Unknown
