Honouring All Carers
Every caring role is different and every one deserves recognition, support, and someone to truly listen.
Theme: The Beauty, Broken and Burnout
This is my story, not a template. Last and Found shares my lived experience, not a ‘right way.’ I’m still in the middle of this journey, learning as I go.
Every caring role is different and all are hard. Relationships, circumstances, health, and the dementia itself shape our journey in ways that can’t be compared or ranked.
My stories are told in the now and I try to honour Milly and the reality of care, offering all that I find along the way, not answers.
I hope that, in Last and Found, no-one feels I’m comparing or claiming a ‘better way’. I’m certainly not - I’m still somewhere in the middle of my journey.
Last and Found comes from my personal experience caring for my mother, Milly, for the last five years. She is ninety-years-old and currently in the middle to later stages of mixed dementia, Vascular and Alzheimer’s. She suffers regular confusion and forgetfulness - but also periods of clarity and connection. She’s had multiple falls over the last few years and after breaking her leg she moved in with my husband and me as she could not care for herself, not least because she has no insight into her abilities and her safety.
This journey is often overwhelming, but I recognize that caring for a parent feels different from caring for a spouse, sibling, child, or close friend. The grief and exhaustion of losing someone you’ve built a life with - or someone whose future you once held - can be a very different kind of heartbreak.
Around one in 33 adults in the UK are caring for someone over the age of 65 who has dementia.
Our experiences as carers can vary widely - not just because of our different lifestyles, such as balancing work alongside caring responsibilities, but also due to our age, our own health, and the nature of our relationship with the person we care for. Sometimes that relationship may always have been a challenging one. Mothers and daughters - Milly and me - a complicated bond. And that’s another story!
The type and stage of dementia also play a big part in how we progress, While most specialists agree that care, calmness and understanding can help ease some of the difficult behaviours linked to dementia - such as agitation, restlessness or shouting - there are times when aggression or violence may occur and cannot simply be soothed away with reassurance.
As carers, we are constantly assessing what might be triggering our loved one’s confusion or distress. Could there be a physical cause, such as pain or infection? Is the environment too noisy or overwhelming? Might paranoia or hallucinations mean a medical review is needed?
And I know it may be easier for me to find moments of hope and positivity because I’m caring for my mother - someone from an earlier generation, where the role of caregiver feels more expected or accepted.
While I try to look for what lasts and what can still be found, when I celebrate a success or find a solution, I share with humility: this is simply my perspective, not a suggestion that this work is easy.
Before dementia changed our world, my mother was a carer - my first carer. She held me, taught me and stayed with me through every version of myself. Now the roles have shifted and I hope Last and Found isn’t perceived as an act of disrespect. I feel it’s a way of recognising the care we’ve given each other over the years.
I understand any instinct that my stories should only be shared after Milly has died, but I think that telling them while they’re happening really matters.
Caring for my mother is a real, daily experience, and sharing it in the moment reflects its truth. Its about what care looks like as its lived, not only remembered.
The pain, the grief, and the struggle run deep no matter who you care for. My hope with Last and Found is to consider new ways of seeing dementia, to share learning, and to find some lightness - but always with respect for the reality that this is a hard, often heart breaking journey.
If you are here and facing your own challenge, I would recommend other sites - see my blog page Life-Line - and meantime I send you hope in the burnout
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