Living With, and Alongside, Dementia: Two Metaphors That Stay With You

At Young At Heart ULO CIC, we’re privileged to hear the real stories behind the diagnosis—stories full of love, frustration, humour, heartbreak, and hope. Every now and then, a carer or a person living with dementia shares something so striking, so raw and relatable, that it stays with us long after the session ends.

Today, we want to share two powerful metaphors that capture what it can feel like to live with dementia—or to care for someone who does.

The Shark in the Water – A Carer’s Perspective

This first metaphor came from a story I heard some years ago—shared by a carer describing the emotional toll of supporting their mother with early-onset Alzheimer’s. The original author is sadly unknown, but the words are unforgettable:

“About 5 years into my mum’s diagnosis, a friend at a party asked me how I was doing. My standard reply was “I’m fine, it’s harder on my family” but, as I went to say it, a truer thought hit me. 

Having a parent with Alzheimer’s is like living inside a horror movie that is playing out in real time. It’s as horrifying and awful as it is tedious and mundane. It’d be like you lived in the movie ‘Jaws’; you’re happily swimming in the ocean and then everyone starts screaming “SHARK”, you start to panic but then someone else yells that the shark is 20 miles away so you calm down a little. But, then a third person gets on the bullhorn and says that you’re not allowed to get out of the water ever again. So you start panicking and flailing and fighting and yelling for help. You scream about how unfair it is, you having to be out in the ocean with this killer shark alone while all of these other people get to be on the beach. You scream until your voice is hoarse and nobody responds. You finally start to accept that it is your fate but then you start thinking everything that touches you is the shark. You can’t calm down because you can’t stop reacting to the things that aren’t there. You grab wildly at anything that looks like a weapon but every time it turns out to be seaweed. Boats go by filled with happy families enjoying the sun. you hate them all so much it makes you feel sick and then you get really tired and you cry so hard that you think your head will burst. and then finally you gather all of your strength and turn to look at the shark. Now it it’s 19.8 miles away, it’s the slowest shark in history but you know it is coming right for you. After five years in the water you start routing for the shark.”

This analogy speaks to the emotional exhaustion many carers quietly carry. It captures the ever-present fear, the anger, the resentment, the helplessness, and the sheer duration of caring for a loved one with a progressive illness.

It’s not a comfortable image—but it’s a truthful one. And in that truth, many carers find a strange sense of validation: I’m not alone in feeling this way.

Falling Behind Myself – A Person Living With Dementia

The second metaphor comes from the perspective of someone living with dementia, possibly from a personal blog or radio interview:

“Imagine I am me, but looking at myself. At the beginning I am just me—whole and complete. But then I start to notice that I am walking behind the image of myself, and over time that image of myself is getting further ahead. I am falling more and more behind.”

This haunting image conveys the lived experience of dementia with startling clarity. It reflects the inner experience of self-awareness in decline—the feeling of slipping away from one’s former self while still being present enough to notice.

It’s not just about memory loss. It’s about identity, autonomy, and the deep grief of being able to see the changes as they happen.

Holding Space for Difficult Truths

Both metaphors are heavy. They are honest and unflinching. But they are also gifts—offered by people who have lived through (or are living through) the unspeakable, and are willing to give it words.

At Young At Heart, we believe it’s important to hold space for the whole truth of dementia—not just the hopeful moments and happy memories, but the pain, fear, and complexity too.

These metaphors can be used in training. They can open conversations. They can help carers say, “yes, that’s exactly how it feels”, and help professionals see beyond the checklists and care plans.

And perhaps, in time, we’ll balance them with new metaphors—ones that speak of resilience, connection, creativity, and meaning in the midst of change.

Have you ever come across a metaphor or image that helped you understand your own experience of dementia or caring for someone else? We’d love to hear from you.

Acknowledgement:

These metaphors were heard and written down some years ago and have remained with me ever since. Despite best efforts to trace the original authors, their identities remain unknown. No claim is made to ownership of these words—they are shared here with the deepest respect and gratitude to those who voiced them. If you recognise the source, please do get in touch so we can give proper credit.