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Lived Experience
Written from the heart, carers reflect on some of the key memories and learning from their own lived experience.
"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
Brain scan day
Several weeks later, following Mum's doctor's visit, the MRI appointment finally arrived. In the car, Mum and I discussed her worries. I reassured her that whatever the outcome, we would see it through together. But first, we needed to find out what was happening and why she was feeling the way she was. Mum knew where this was heading; I was sure she did, and it was frightening for her. She requested that I stay with her during the MRI scan, but I was unable to do so. I infor
Nov 3, 20252 min read
Who cares for the carers?
Who cares for the carers? I felt like no one did unless you knew where to look, and often by the time you find it, it's too late. I was passed from one person to another while desperately seeking help for myself and my Mum. Without support, you'll exhaust yourself and burn out. Some say 'you can't pour from an empty cup'. It makes sense. I knew I needed help, but wasn't sure what kind, just that I needed something. I was tired, impatient and starting to feel very depressed. O
Nov 3, 20252 min read
Why I took away her freedom
The most heartbreaking decision so far I have had to make for my Mum is, 'taking away Mum's freedom'. Let me explain... Mum was an avid walker and would do so, unattended, umpteen times a day! This went through phases over the course of 5 years, of her being 100% safe and road aware, down to 50%, and evidently leading to 0%. As her carer and more importantly, her Daughter, her safety is paramount, and the most important duty I could do for her. I introduced a GPS device, so I
Nov 3, 20253 min read
Grieving a loved one, when they're still alive
The reality of grieving someone whilst they're still living, is strange. Certainly something I never would've understood years ago. I guess, only people in my situation could really relate. I miss my Mum in the simplest of things; her cooking, her voice, her humour, her smell, the softness of her facial features, her calm presence and so on. She is still very much alive to this day, but sadly, not as I remember her. I still find myself going to her, with good news or stories
Nov 3, 20253 min read
The hard days
Some mornings I'd wake up to screams loud enough to strip the paint off our walls. I'm surprised the doors in my home still hang on their hinges. Can you imagine being woken up from a deep sleep by such things? My heart would be in my throat. Unpredictable rage with no visible cause, was something I had no choice but get used to. The most I could put it down to was Mum had a nightmare. Alzheimer's sure does the most brutal damage to a person, I will never forget these days in
Nov 3, 20252 min read
The importance of Plan B
After receiving Mum's diagnosis and facing some challenges in caring for her, I realised the importance of discussing 'Plan B' with my other family members, in case something happened to me. Unfortunately, I wasn't reassured that anyone could take over my 'role'. Instead, Mum would likely be placed into a care home. I felt sad for Mum, but I had to understand everyone has their own reasons, and wants for their own lives. So, I did what I could to cover myself in the event of
Nov 3, 20251 min read
When you don't know what you need
Addressing mental health struggles, whether they're your own or someone else's, or dealing with mental illness as someones carer, should not be taken lightly, and is not something one person can handle alone. There is no shame in seeking help, but many people struggle to know what to ask for, as I discovered while caring for my Mum. There are countless questions I'd love answers to, but when it comes time to ask, the words just don't come. The frustration is real. How can you
Nov 3, 20252 min read
"The Quiet Between Us" – Living With Mum and the Loneliness That Comes With Love
The house is quiet now. Mum’s asleep on the sofa. It’s strange how loud silence can feel when you’ve spent all day speaking, repeating the same reassurances: “It’s okay, Mum.” “I’m here.” “You’re safe.” I live with my mum, who’s in the middle stages of Alzheimer’s. Some days, she’s chatty and even laughs at old jokes she’s told me a hundred times. Other days, she looks right through me, her eyes searching for someone she can’t quite find. And then there are days like today —
Nov 3, 20252 min read
Letting Go of the Need for Everyone to Understand
When I first became Mum’s carer, I spent so much energy trying to explain what it was like — the exhaustion, the fear, the constant feeling of grief. I thought if my family and friends truly understood, they’d somehow ease the weight of it. But over time, I’ve realised something hard and strangely freeing: not everyone can understand, and that’s okay. When Mum was first diagnosed with Alzheimer's. The phone rang often, the messages poured in. But as the months turned into ye
Oct 30, 20252 min read
Home is a feeling
Whilst I have been caring for my mum, one sentence that she often says during moments of distress is, "I want to go home." I found that telling her, "You are home, Mum," never worked. There was clearly a 'need' that had to be fulfilled, but sometimes it was extremely hard to determine what that was. It could be something as simple as hunger, thirst, feeling cold, or needing the loo, so these were always my first options to consider. If it wasn't any of those, it became a game
Oct 30, 20252 min read
Caring through chaos
Within two years post-diagnosis, the changes in Mum became more noticeable and challenging, continuing to this day. She experiences daily physical and verbal outbursts at irregular and unpredictable intervals, both in timing and severity. Mum will bang on household objects, slam cupboard and fridge doors, and hit the windows, damaging the seals. Entering and exiting doors often results in multiple bruises from her lashing about, with damage also inflicted on the paintwork and
Oct 20, 20253 min read
Masking behaviour
While caring for my mum, I often observed how her behaviour varied with each person she interacted with. As her Daughter and primary carer, I spend every day with her since we live together. I help her with everything, preparing all her meals and handling all the tasks a carer typically undertakes, which allows me to witness every emotion and change in behaviour. I started to notice that when family members visited, Mum would act like her 'normal' self—eating properly, using
Oct 20, 20252 min read
How I handled free time
In the beginning, it was possible to have some free time for myself, but only once Mum was asleep and settled. I used to leave notes around the house incase she woke up for any reason and forgot where I was, reminding her that I was out and when I would be returning home. These notes were helpful in the early days of her diagnosis. Over time, she began waking up in fits of panic, realising I was out, leaving the house to look for me, locking herself out, and needing assistanc
Oct 19, 20252 min read
How I'm treated as a carer by others
I am fortunate to be surrounded by some very understanding and supportive people—those who ensure I am taking care of myself as well as my Mum. They offer unlimited reassurances, saying, "If you need anything, just ask," while also giving me the space to talk about anything I need to and offering advice. On a different note, I have received one or two comments from certain individuals, such as, "Make sure you look after your Mum; she needs you," during my moments of despair w
Oct 19, 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
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