The story behind it all

Towards the end of 2019 my beautiful mum Nina, who was also the most devoted grandma to my then two young children, begun to show signs of confusion and memory loss. At only 65 years old, and previously very fit and healthy, Doctors struggled to reach a definitive diagnosis of her condition but could see clear neurodegenerative signs. Without a diagnosis we had no specific support to tap into and were left alone and inexperienced trying to manage memory loss and changes in her behaviour, which quickly progressed to her losing the ability to swallow. As time went on, the symptoms progressed and we had to feed her through a tube into her stomach. She would wake up and be in a “different scenario” every day, thinking it was her wedding day or needing to get to school, causing us and her so much distress. The aggressive nature of the physical and neurological degeneration meant she very quickly becoming a shadow of her former self. Our relationship changed, I was now caring for my mum.

In a desperate bid to try a get some kind of diagnosis and to therefore get targeted support, we sought opinions from different doctors with different specialisms, and mum undertook multiple memory tests and brain scans. After some time, it was decided the condition was causing a rare dementia called Frontotemporal Dementia (FTD), a term that is now becoming more prevalent being the same condition that Bruce Willis is suffering with.

After researching support and help for such a devastating condition, I thankfully came across The Contended Dementia Trust. The Trust has a book that outlines a management strategy called the SPECAL method. I found I could relate to the method described and therefore booked onto their two hour course to get trained on SPECAL. From this point forward The Contented Dementia Trust became an immense support helping us to implement the SPECAL method when caring for mum, and also just listening and supporting as mum's symptoms got worse. I gave up my job to become a primary carer alongside my dad. We found implementing the methods we learnt gave us structure and direction for managing mum's care ultimately making the heartbreaking journey that bit easier.

I fell pregnant with my third child and after having difficult recoveries from my previous births, I knew I wouldn’t be able to care for mum especially as her deterioration was fast. With the help and support of The Contented Dementia Trust, at 39 weeks pregnant I settled mum into a care home again using their SPECAL method. This was the hardest thing I’ve ever done and I was so grateful for their support.

My mum passed away last year on the Queens Golden Jubliee, in her last hours she was enjoying her favourite past-time, dancing away at the care home’s celebrations. We lost her twice, once to the FTD and then again physically. The Contented Dementia Trust has continued to support us out of the goodness of their hearts and I honestly couldn’t have done it without them.

I am desperate to give something back to this amazing charity. I want to make sure the charity can thrive and help even more people as so many struggle on without knowing such support is available. Any contribution you are able to make would be so appreciated.