Lived Experience

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

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

Financial Support for Carers in the UK: Benefits, Applications, and Funding Options Explained

Caring for a loved one can bring joy, but it also comes with its share of challenges. In the UK, many individuals take on caregiving roles without completely understanding the financial support available to them. This blog post highlights various funding options, benefits, and the application process for carers, so you can navigate your financial support options confidently. Understanding Carer’s Allowance Carer’s Allowance is one of the primary benefits available for carers

Sep 23, 20254 min read

“People Just Stared”: Facing Stigma While Caring for My Dad in Public

When my dad was diagnosed with dementia, I knew life would change—but I didn’t realise how much harder it would get once we stepped outside the front door. Inside the house, I could manage the routines, the refusals, the memory lapses. But out in public? That was a different battlefield. One I wasn’t prepared for. This blog is about the stigma. The looks. The whispers. The outright laughter. And how I learned—slowly, painfully—not to let it break me. The First Time It Happene

Sep 10, 20254 min read

“I Don’t Need Your Help”: Navigating My Dad’s Dementia and Personal Care Refusals

When my dad was diagnosed with dementia, I thought the hardest part would be the memory loss. I braced myself for forgotten birthdays, misplaced keys, and the slow erosion of shared stories. What I didn’t expect—what no one really prepares you for—was the resistance. The flat-out refusal to let me help with the basics. Personal care became a battleground, and I was caught between wanting to preserve his dignity and needing to keep him safe. This is my story. Not polished or c

Sep 10, 20254 min read

Navigating Incontinence: A Caregiver's Journey

Understanding Incontinence Incontinence is a condition that affects many individuals, especially the elderly. It can be a sensitive topic, often shrouded in stigma. However, understanding it is the first step toward managing it effectively. Incontinence Statistics in the UK Incontinence is more common than we often realize. According to the UK National Health Service (NHS), approximately 3 million adults in the UK experience some form of urinary incontinence. The prevalence i

Sep 1, 20255 min read

Empowering Carers in the UK: Essential Support Resources and Community Connections

Caring for a loved one can feel both rewarding and overwhelming. In the UK, around 6.5 million individuals take on caring roles, providing vital support to family members and friends who are elderly, ill, or disabled. This responsibility can lead to feelings of isolation, stress, and burnout among carers. It is crucial to explore the support resources and community connections available to empower carers, ensuring they receive the help they need. Understanding the Role of Ca

Sep 1, 20253 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