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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.
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
7 days ago2 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
Memory boosters
Photos of family members over the years enhance Mum’s memory. We discovered that having a small assortment, including images of her throughout the years, was beneficial in triggering happy memories, albeit for a brief period. Often, she would confuse pictures of me with those of her, and herself with my Nan, due to her facial recognition not being as sharp as it once was. We make a conscious effort to keep up with the ever-changing faces as everyone grows, especially her Gran
Nov 3, 20252 min read
Mum stopped eating
At least once a year Mum would take on voluntarily not eating. This was terrifying, her weight would plummet. In our situation she never fell past 8 stone when she did this. However, in Mum's world this was a lot! as she usually hovered around the 10 stone mark, so a 2 stone weight loss, looked very obvious on her small frame. I would panic as the days went on. I tried all sorts of different ways to get her to eat; homemade smoothies to get her 5 a day sweeter foods to bulk
Nov 3, 20252 min read
I have had enough
I remember being 3 years into caring for Mum, often feeling stressed and exhausted. The most common thought I had was, "I've had enough; I can't do this anymore." I have lost count of how many times I thought this. The daily abuse, the lack of appreciation, and the loss of my own life became overwhelming; my cup was officially empty!. What now? I felt stuck. I was having no luck with the NHS, and Mum was rejecting any approach to hiring carers. No one wanted to step into my s
Nov 3, 20252 min read
Creating my village of support
Caring for an elderly person or those who are unwell and vulnerable is a role that cannot be undertaken alone. It takes a village to care for someone, and by that, I mean family members, healthcare professionals, social workers, pharmacists, GPs, specialists, nurses, and carers—you name it; we need them all!. As a family carer, I know my Mum inside out and understand how she feels about being cared for, as well as what she does and doesn't want for her future when she started
Nov 3, 20252 min read
A seat for Mum
Going out for lunch was something Mum and I loved to do together. It provided us with quality time and the opportunity to eat at some really lovely restaurants. Once Mum was diagnosed with Alzheimer's, we could still go out as normal for a short period, but as the months went on, this became a little trickier than I was used to. The timing of our outings became crucial to avoid overly busy restaurants at peak times. I often opted for a first sitting as the restaurants were op
Nov 3, 20253 min read
Sometimes you just need a hug from your Mum
Personal struggles and reminiscing about better days before Alzheimer's started to take over became increasingly difficult when I couldn't receive that much-needed hug from my Mum. She would push me away if her mood shifted. Whenever I was visibly upset, I tried to hide my face from her, to save upsetting her too. How I longed for a trip into the city to enjoy lunch at that Italian café we loved so much and to engage in the usual banter with the owner, who I was sure had a so
Nov 3, 20251 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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