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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.
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
Is that where the mad woman lives?
Mum has lived in her family home for over 40 years. She is known by many in the village where we reside, long before Alzheimer's set in. She used to volunteer at the local primary school, delivering hot meals to the elderly and vulnerable. I even accompanied her during my school holidays. I remember that a couple of the people she delivered meals to were living with dementia themselves. Before we entered their homes, Mum would brief me that sometimes their behaviour could be
Oct 16, 20252 min read
It was time to give back
After learning about Mum's diagnosis, I had many thoughts about becoming her carer. How would I manage? How would this impact my life? How difficult would things become? Am I capable of being a carer? And so on...After all, dementia of any kind affects each individual, differently. My thoughts always returned to one thing: 'to give back.' While I hadn't chosen to be her Daughter, she chose to be my Mum, and she is a good one. I understand that many people, for their own reaso
Oct 14, 20252 min read
Diagnosis day - Receiving an official Alzheimer's diagnosis.
On 21 November, 2020, the phone line was unclear. All I heard was, ‘Are you OK with receiving your Mum's results over the phone, or would you prefer to wait until you're home?’. Distracted by the noise of a busy supermarket, I responded, ‘No, it’s fine, you can tell me now, and I can share the details with Mum, once we’re home.’ We assumed she might have had a stroke at most. The next sentence was a shock: ‘Right!... She has what we call “Alzheimer’s in dementia.” Mum often j
Oct 6, 20253 min read
Incontinence, the good, the bad and the runny...
Let's be honest, discussing bowel habits isn't pleasant, but there was a point when it felt like it was all I talked about. Understanding the Signs Initially, I noticed subtle signs with Mum, aside from the obvious wet spot on her trousers. A faint smell here and there made me question whether or not she'd had an accident. She frequently adjusted her underwear, which raised my concerns. Mum had three children, so her bladder wasn't as strong as it once was. Panty liners were
Sep 23, 20254 min read
It's not just a quick fix
I found that the more I spoke to people who had no experience of being a carer, nor living with or being around someone with dementia, the most common thing I heard was 'you moan a lot but do nothing about it to make YOUR life easier' or...'put her in a care home, you need to have your life.' When you feel overwhelmed with stress, it's very hard to take that first step to seek help. You have so many emotions of grief, guilt, anger, etc., and sometimes just an understanding ea
Sep 23, 20253 min read
The Comprehensive Guide to Employing a Carer in the UK: Pros, Cons, and Essential Considerations
Finding the right care for a relative can feel overwhelming, especially when faced with age-related challenges, illness, or disabilities. In the UK, many families are navigating the complex decision of hiring a carer. This guide provides a detailed overview of the benefits and drawbacks, how to find the right carer, what qualifications to look for, and the legal obligations involved in this process. Pros of Employing a Carer Personalised Care One of the biggest benefits of hi
Sep 23, 20255 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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