Lived Experience

Written from the heart, carers reflect on some of the key memories and learning from their own lived experience.

Becoming a Carer - Thrown in From the Word Go

When a loved one receives a diagnosis of Alzheimer’s, there is no manual handed to you. One moment, they are themselves; the next, you find yourself stepping into the role of their carer, navigating a world you never anticipated, expected to know what to do, armed only with leaflets and phone numbers that often go unanswered. It’s 2 a.m., and panic sets in. Mum is agitated, wandering, and confused. At first, I couldn’t tell if her behaviour was normal, dangerous, or a medical

22 hours ago3 min read

When Winter Loosens Its Grip

Every year, I tell myself I’ll be ready for the shift of spring, that loosening of winter’s grip when the days stretch longer. But in our house, spring bursts in and shakes everything up. One afternoon in late February, I notice the sun lingering past five, sneaking through the blinds and landing on Mum’s sofa. She squints and asks, “Are we going out?” I remind her it’s almost tea time. For someone with dementia, light can be confusing; dark winter days meant rest, but now da

Mar 63 min read

The Price of Consistency

There’s a role no one prepares you for, the one where you become the consistent one . The steady voice. The repeated reminder. The safe place. The memory holder. As an adult daughter caring full time for my mum with Alzheimer’s, consistency becomes your identity. Not because you chose it, but because someone has to. And that someone is you. Alzheimer’s doesn’t just steal memories. It quietly rearranges the family structure. Your mum, the woman who once reminded you to take yo

Feb 273 min read

The Longest 4 Minutes of my Life

Being an adult daughter and a carer to my mum has taught me many things: patience, grief, resilience, and the strange art of living in constant uncertainty. You learn to expect change. You tell yourself you’re prepared, but the truth is, you’re never really prepared. Recently, my mum experienced her first seizure. One moment, life was carrying on in its familiar, fragile rhythm. The next, everything stopped. Time compressed into a single terrifying moment where all I could th

Feb 172 min read

Everything I Do, I Do for Her

Caring for my mum, who is living with middle-stage Alzheimer’s, is a journey that is hard to fully understand unless you've experienced it yourself. Some days, it feels like I’m in a world that has turned upside down, a place where familiar things seem strange, where memories fade away like mist, and where my mum, the woman who once guided me through life's challenges, sometimes struggles to hold onto her own memories. People often ask me, “How do you manage?” or “Aren’t you

Feb 22 min read

What Being a Carer Can Look Like to Those on The Outside

Caring for a family member with dementia can be much tougher than it appears from the outside. It’s not just about completing tasks and making difficult choices; it's also about remaining vigilant and adapting to constant changes. Whilst many may think that a significant portion of my day involves watching television with Mum, preparing meals, walking around our village, cleaning spills, and monitoring toilet visits, there are countless little things they don't see. These inc

Jan 243 min read

Melton Police Receive Award For Helping A Man With Dementia

The kind and heroic actions of two officers from Melton Mowbray in rescuing a man with dementia during severe flooding in Bottesford has attracted the praise of an off duty chief inspector from Nottinghamshire Police. PC Dan Daley and Sergeant Jon Martin were on patrol last year, when a storm and significant rainfall led to the worse flooding Bottesford had seen in recent history. The officers were responding to a call from a neighbour of an elderly gentleman with dementia wh

Jan 132 min read

A New Year as a Daughter Caring for a Parent with Alzheimer's

The new year arrives quietly in our house. There’s no champagne countdown, no big plans scribbled into fresh diaries. Instead, there’s medication to organise, routines to protect, and the hope that tonight will be a “good night” rather than a confusing one. For my mum, the new year doesn’t mean anything at all. January looks exactly like December. The calendar turning doesn’t register when dementia has already loosened its grip on time, and yet—for me—it still carries weight

Dec 31, 20252 min read

Shadowing in Dementia

Shadowing in dementia is a behaviour where a person with the condition constantly follows their primary carer, often driven by fear, anxiety, or a need for reassurance. It can manifest as following from room to room, becoming agitated when separated, or invading personal space. This behaviour stems from insecurity and a feeling of being alone, and it can be managed by providing a safe and reassuring environment. Mum 'shadowed' me everywhere! To be completely honest, as much a

Dec 9, 20252 min read

How Much Longer Will This Go On

I’m 39, and most days I feel like I’m living two lives—one where I’m trying to hold my own world together, and another where I’m holding my mum’s world from falling apart. Mum is 76, and Alzheimer’s has already taken so much from her. And from us. People don’t talk enough about the “in-between” years of this disease—the years where your loved one is still here, still able to walk, still able to talk, still able to smile… but slowly slipping away. Some days I catch myself wond

Dec 9, 20252 min read

Preparing for Christmas

Mum and I have always loved Christmas; it is the holiday we cherish the most, filled with delicious food and time spent with our loved ones. Sadly, as the years have passed and family members have passed away, our family has inevitably become smaller and smaller. Consequently, Christmas now looks significantly different from what I was once used to. Now, with Alzheimer’s added into the mix, things have changed even more. What should be a holiday to look forward to, a time to

Nov 27, 20253 min read

A Small Victory

As Mum's main carer, I face daily battles with numerous challenges while caring for her. So, when a small victory arises, it reminds me that even on the hardest of days, good will come. My main areas of difficulty are personal care and sleep with my Mum. I have always told myself that I will never dictate her life; it is her own, and I am there to support it, not control it. If Mum wishes to nap or go to bed when she wants, she does just that. I try to align my schedule with

Nov 17, 20251 min read

Finding Humour in Small Mishaps

There are times when you simply have to laugh. One thing that always brings a chuckle or helps me see the lighter side of a tough day is when my Mum adopts different accents during her outbursts. Sometimes she reverts to a Cockney accent, at other times she sounds like she’s from the Deep South, and occasionally she turns Irish! How or why this happens, I will never know, but it makes me laugh every time. If I were to get technical, we have family heritage from Ireland, relat

Nov 17, 20251 min read

Signs Starting to Appear

On this particular day, I came home from work and glanced into the living room before greeting Mum. She was sitting on the sofa with our family dog, watching her usual TV shows. Everything looked 'normal' so far, but something told me to look closer that day. I noticed her face appeared empty and drawn, lacking expression, with insufficient muscle tone to convey any emotion, and seeming too relaxed for someone who was awake. Had she had a minor stroke? Was this the beginning?

Nov 17, 20252 min read

Me, Them and Everyone I Love

How being a carer affects my relationships... Personal Relationships I haven't been in a relationship for a long time, and honestly, I'm a bit nervous about it, especially since I'm taking care of my Mum now. I worry about whether I’ll have the time for someone else and if my Mum's circumstances will make things complicated. Will anyone want to deal with my situation? All she ever wanted was for me to find someone nice who treats me well. Whether she’d understand if that ha

Nov 7, 20253 min read

"How to Talk to a Parent with Alzheimer’s: Lessons Learned the Hard Way"

When my mum was first diagnosed with Alzheimer’s, I would correct her when she got details wrong, fill in her memories, and try to bring her back to the present. It didn’t take long to realise how exhausting and heartbreaking that approach was for both of us. Alzheimer’s doesn’t just steal memories; it rearranges communication itself. The rhythms, the logic, and the give-and-take of conversation change. I had to unlearn almost everything I thought I knew about how to talk to

Nov 7, 20252 min read

“Affordable Self-Care Ideas When You Can’t Get Away”

Caring for a mum with Alzheimer’s changes everything. The days can blur together — meals, medications, doctor’s visits, gentle reminders, and those endless small moments of redirection and reassurance. You love her deeply, but you’re tired, stretched thin, and sometimes you wonder if there’s anything left for you. We’re told to “take time for self-care,” but what if you can’t get away? What if respite care isn’t available, or your budget won’t stretch to a weekend off? The tr

Nov 6, 20253 min read

A Day in The Life of Me

Good morning — or at least, I think it’s morning. I have been awake since 3:30 am. It was very dark when I was woken up. I lie there for a moment, listening. Somewhere between the kitchen and her bedroom, Mum wanders from room to room, searching for who knows what. Surely it can't be time for breakfast; it feels as though I have only been asleep for an hour. When I sit up, I have to remind myself: do I really want to start the day now? Mornings are tricky. Mum no longer recog

Nov 6, 20252 min read

Taking a break doesn't mean giving up

I used to think that stepping away, even for a moment, meant I was letting Mum down. That if I really loved her — if I was strong enough, patient enough, devoted enough — I wouldn’t need a break. But Alzheimer's doesn’t just change the person you love. It changes you, too. Somewhere between the endless cups of tea, the repeated questions, and the sleepless nights, I began to disappear a little. The Guilt That Follows You Everywhere The first time I took a full afternoon off,

Nov 4, 20252 min read

Mum before Alzheimer's

Mum was a very laid-back person, shy around unfamiliar people, and mostly kept to herself. She had an amazing sense of humour and never took herself too seriously. Many people wanted to get to know her, but she only spent a small amount of time with others outside her family. She was never one for being overly sociable, but that was just how she liked it. Always busy, you would often find her doing something or going somewhere. She is, and always will be, very family-oriented

Nov 3, 20252 min read

Disclaimer:
The blog posts featured on this site are written by volunteers and carers who generously share their personal experiences, reflections, and insights. These accounts are deeply individual and may not reflect the views or circumstances of all carers or care recipients. We recognise that each journey is unique, and readers may have different perspectives or experiences. The content is intended to foster understanding, connection, and dialogue—not to offer clinical advice or definitive guidance