The 'living grief' as mum's dementia took hold

Cassandra Farren has written a book about dementia called I've Lost My Mum

Cassandra Farren has written a book about dementia called I've Lost My Mum - Credit: HUNTS POST

When Cassandra (Cassie) Farren's mum was diagnosed with dementia in 2014, she began to document the heart-breaking experience and eventually she wrote a book.

Here, for our We Need To Talk...Dementia feature, Cassie talks candidly about the early days when her mum just seemed a little forgetful and then she talks about what she describes as the "living grief" of her mum's descent to a place where she failed to recognise her family.

Cassie, aged 41, who grew up in St Neots and attended Longsands School, describes dementia as "soul-destroying for the person who is diagnosed and anyone who loves and cares about them".

Her mum Linda was a teacher and it wasn't until after she had retired that a few tell-tale signs began to emerge. 

"She started to repeat herself a lot, but she would say to us that she had to relax her brain now that she wasn’t working. We suspected there was more to it than that and eventually, we convinced her to visit the doctor," explains Cassie.

The official diagnosis came in 2014 via a letter which confirmed Linda, then aged 67, had dementia.

"I searched on the internet for dementia support and found a forum which asked me if I wanted help with the early, middle or end-of-life stages of dementia? This is how I found out that my mum had a terminal condition, for which there was no treatment and there was no cure."

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Cassie says over the next six years, the situation veered from calm to complete chaos. Her mum became withdrawn, scared, and anxious. She could no longer speak clearly or get her sentences out and she was often paranoid and frightened.

"She wouldn’t let my dad out of her sight, so he lost his independence, too. Mum went missing and we had to call the police. One day she went downstairs to make a cup of tea, but let herself out of the back gate and was found at 7am in her pyjamas and a pair of socks.

"I was 30 miles away, trying to bring up my two children on my own, trying to run a business, trying to work two separate freelance jobs to make ends meet and trying to support my dad emotionally."

There came a day when her mum forgot how to put her shoes on, or perhaps why she needed shoes, and Cassie says another time when she watched as he mum took her house keys out but couldn’t remember how to unlock her front door. 

Cassie recalls the day in 2018 when her mum telephoned as she was having a panic attack and she knew her mum was no longer safe.

"When I ended the call, I completely broke down. If you had seen me in this state, you would have thought that my mum had died, she hadn’t died, but I was grieving.
"It was then that I knew I had to have the hardest conversation of my life with my dad and my sister. I told them that I didn’t feel it was safe for mum to live at home any more, and that we needed permanent help.

"Mum had begged me never to leave her in a care home, and told me that she would rather die than be left in an 'institution'. She made me swear on her life that I would never do this, but tragically, the woman whose wishes we were trying to honour, was gone.

"The hardest day of my life was when I collected my mum from the house where she had lived for 30 years, for the very last time."

"Nobody sees these moments and not many people speak about them, which is why we need to talk about the harrowing and lonely journey of dementia and living grief."

Cassie's mum Linda, died from dementia in December 2020. Cassie decided to share her  journey as she wants to end the stigma that surrounds dementia and openly share the truth of loving someone who is lost between worlds.

Cassie''s book I’ve Lost My Mum is available from Amazon on Kindle, paperback and audiobook.