top of page
Lived Experience
Written from the heart, carers reflect on some of the key memories and learning from their own lived experience.
Choose peace, not war
I was minding my own business, browsing on my laptop, doing as we are told to do as carers and 'not react'. I picked my battles this particular day and chose peace, not war. Mum was on one of her raging bull outbursts, and my gosh, was she going for it. In the blink of an eye, a freshly made cup of tea came hurling at me, spilling all over our hardwood floor, the rug, and smashing into one of Mum's much-loved elephant ornaments. 'Please don't do that, Mum, that's dangerous.'
Nov 3, 20251 min read
Explaining to the little ones, what's happening to Nanny
I remember the first change my Niece noticed in Mum. We were all sitting and watching TV in the early afternoon. Mum liked antique programmes at the time and didn't mind conversations going on in the room while she watched them, especially from the kids. My Niece asked a simple question, and Mum turned, scowled at her, and told her to "be quiet!!" This was surprising because Mum never spoke that way, especially to her Grandchildren. My Niece laughed it off, saying, "You're no
Nov 3, 20252 min read
Forgotten but still loved
While I have been caring for my Mum, there are many moments that stick in my mind, one of which is when Mum first forgot my name. It was an ordinary day at home. Mum and I were talking; perhaps I was speaking too quickly or hadn't noticed that she wasn't following what I was saying too well. I don't know. There was a pause, and she said, "Who are you anyway?" At first, I didn't really know how to take it. I thought it was banter and that she was just joking, but I also notice
Nov 3, 20252 min read
Things that help me care for my Mum
Nostalgic memories - those little reminders of the past that can truly warm Mum's heart. They can stimulate all sorts of experiences, such as the smell of her favourite childhood meals, photos that capture special moments, TV shows that shaped her views, and those cherished items that hold so much meaning. When it comes to relationships, especially with those who might be dealing with cognitive challenges, being present and genuinely listening to her is incredibly importan
Nov 3, 20253 min read
Full moon week and Mum
During the week of the full moon, Mum's behaviour would worsen and she would do the strangest things during the night. Things such as; walking around our living room with our flat screen tv in her hand, pulling pictures off the wall that had never been bothered with before, dragging her mirror along with all her bits and bobs off her dressing table, onto the floor, and sitting on the floor in the random areas of the house. This odd behaviour only seemed to surface around a fu
Nov 3, 20251 min read
Feelings of resentment
Feelings of resentment as a full-time carer are real. I break it down in my mind as not disliking the person, but rather the situation the disease creates. I love my Mum with all my heart, but the dementia version of my Mum, not as much. It took a lot for me to come to terms with this, separating the two people when all I saw was one. I felt immense guilt when describing my Mum in ways I never thought I would. My 'Mum' loves me, encourages me, and shaped me into who I am toda
Nov 3, 20253 min read
Things I find hard whilst caring for Mum
Negative Changes in Myself I’ve noticed that my mood has changed, and I often feel angry without warning. This isn’t just a small annoyance; I react more strongly to things that used to bother me less. This makes it hard to stay calm. I feel frustrated and guilty because I’m not the person I used to be, which creates a cycle of anger and regret. Losing My Sense of Self I struggle with feeling disconnected from who I once was. The things that used to make me happy now feel emp
Nov 3, 20253 min read
“The Great Café Showdown”
Outings with Mum are different every time; you never know what is going to happen. This particular experience is from one of Mum's regular outings with her carer, who is fantastic with her. In our community, we have a few wonderful places that provide a change of scenery for Mum without requiring extensive travel. She has visited this particular place multiple times before and is well-known there, as is her carer. Mum typically goes out for about an hour. I waved her off at t
Nov 3, 20252 min read
Holding the home together
In our household, cleaning was the sole task that Mum completed daily from the very beginning. Sadly, this became much more challenging throughout her diagnosis. To this day it is one of the hardest jobs to complete in my house, as the noise distractions from the vacuum cleaner often agitate her, resulting in the hoovering being postponed day after day. Clumps of dog fur, cobwebs, and dusty windowsills that were once unheard of soon became a common sight in our home. I couldn
Nov 3, 20252 min read
'The cost of caring'- dealing with compassion fatigue
Compassion fatigue is a form of emotional and physical exhaustion that can affect individuals who care deeply for others — particularly those in caregiving roles such as family carers, nurses, social workers, or hospice volunteers. It is often described as the “cost of caring” — when you invest so much empathy and support into others that your own emotional reserves become depleted. This condition manifests when caring starts to hurt more than it helps — when the emotiona
Nov 3, 20251 min read
My experience of 'helplines'
The first time I tried calling dementia-related helplines, I found that the people on the other end of the line lacked compassion, in my experience. They offered no sense of comfort and nothing constructive to help me. I thought these helplines were there to assist, but I discovered that they often provided more textbook responses, or the individuals on the line would vent their own frustrations. The lines were frequently unanswered; instead, I regularly encountered an answer
Nov 3, 20252 min read
Walks with my Mum
Walking is something my Mum loves to do and used to do on her own. Sadly, through no fault of her own, she is no longer safe to do this alone, so I accompany her twice a day. What starts out as a nice and relaxed outing—looking at birds in the trees, petting people's dogs, and talking to those we meet—eventually turns into a source of dread. Mum's hand would start squeezing my arm tightly, her pace would increase, and she would become agitated, constantly shouting, "I want to
Nov 3, 20252 min read
Seasonal shifts
If the person you're caring for is anything like my Mum, you will understand when I say, "Brace yourself, winter's coming!" as the seasons change. If not, here is an insight into what seasonal changes look like in my household, where I live with my Mum, who has mid-stage Alzheimer's. An extra hour in bed? What's that? Darker mornings and nights drawing in lead to all sorts of fun and games. The moment the leaves start to fall, even before they touch the ground, I notice an im
Nov 3, 20253 min read
The follow up appointment after diagnosis
The specialist nurse visited our home two weeks after we received Mum's diagnosis. Her approach felt very clinical and lacked genuine emotion. It seemed scripted, like sending a child to the door with a wallet full of brochures containing numbers and mind-numbing information that I still haven't read. After handing me Mum's paperwork, she asked Mum a few set questions from a sheet of paper, which she would then pass on to the specialist to assess Mum's capacity since her diag
Nov 3, 20251 min read
"The Supermarket Encounter: A Lesson in Patience and Perspective"
My brother and I took Mum to the supermarket this day, something we could do weekly with her until very recently due to her becoming overwhelmed in busy environments. With Alzheimer's, a person living with the condition can start having trouble recognising people's faces. In Mum's case, it went a step further; she thought she knew everyone, even complete strangers! Yes, she believed she had known them for years. We hadn't been in the supermarket for five minutes when she spot
Nov 3, 20251 min read
Boost Your Caregiving Journey with Support
Caring for an elderly relative is a journey filled with love, patience, and sometimes, unexpected challenges. It’s a role that asks so much of us, often without a clear roadmap. But you don’t have to walk this path alone. There are ways to make your caregiving experience more manageable and fulfilling. By embracing effective caregiver support strategies, you can nurture both your loved one’s wellbeing and your own. Let’s explore how to boost your caregiving journey with pract
Nov 3, 20254 min read
Introducing carers
In our home, having a carer was always a big ‘NO,’ as far as my Mum was concerned, rooted in old-fashioned values of strong independence, and the belief that needing help was a weakness. We all know that's not true; asking for help is brave and can lift a huge burden. I tried discussing with Mum the idea of incorporating some help into our daily routines, but she always responded with denial and anger, saying things like; ‘this is my house’ and ‘I can do it myself.’ I underst
Nov 3, 20252 min read
This is me...a personal bio of a carer
I'm a 39-year-old woman. My Dad passed away from heart failure when I was 26, and my Mum was diagnosed with Alzheimer's just as I turned 34. What a life, right? I have two older Brothers, one living in the UK and the other abroad. My family in general is not very big. I have no children and never married. I'm a huge animal lover, I used to work as a Receptionist/PA. I lived an active social life and loved spending time with my friends. I was happy and content. During the peak
Nov 3, 20253 min read
Something's not right...leading up to diagnosis
Initially, small changes appeared with Mum such as: misplacing items, repeating stories or memories, and neglecting personal appearance. She suddenly stopped caring about her greying hair, skipped wearing daily mascara, didn't moisturize her hands and face, didn't bathe every day, neglected trimming and cleaning her nails, and no longer discarded socks with holes. She developed an unusual routine, resembling OCD. She mispronounced words, struggled to find the right ones, expe
Nov 3, 20252 min read
Living with the one you're caring for
A subtle difference I noticed in some people I spoke to about caring for Mum, was how I seemed to have a lot more stress and worry on my shoulders, than others that had cared for someone with dementia. Yes, we spoke a lot about similar things we'd experienced as being carers. We shared stories of how we dealt with certain situations, talked of the stresses and worries, but something still lacked in my eyes. I hadn't met someone yet, who had LIVED in the same house, 24/7, as t
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
bottom of page