Share your story

My husband was diagnosed with Parkinson’s in 2008. Followed in 2018 with Alzheimer’s and Parkinson’s dementia with psychosis. In 2019 caring for him at home was no longer an option as he became violent which was totally out of character and I was no longer safe.
He went into a nursing home but from his violence he ended up being admitted to a psychiatric hospital for 5 months before returning to nursing home.
I have watched him disappear and die a bit more everyday until he died in March of Alzheimer’s.
Without the nursing home our lives would have been impossible their lives and support for both of us and our family was invaluable and made the lady 5 years bearable for us all.

I loved my mum enormously. I still do, although she has now passed away.
I started to notice signs of mum’s dementia quite a while before the GP agreed with me. Mum was very intelligent, and was good at masking her failing memory and inability to complete everyday tasks and activities. The greatest difficulty in getting a diagnosis was mum’s inability / reluctance to recognise or admit that there was anything wrong. This continued throughout her Alzheimer’s journey. I had to find alternative language to encourage her to accept the need to seek help. I certainly couldn’t ever take her to a ‘dementia cafe’. She didn’t really want to mix with groups of people as she found it too confusing, and she wouldn’t allow anyone but me to care for her. However, she experienced bouts of paranoia, which were very stressful for both of us - particularly prior to her diagnosis, as I felt that onlookers might misunderstand what was happening. A diagnosis was key, as I knew that there may come a time when I would need to enlist additional support, and mum needed others to be aware of her circumstances and adjust their behaviour in order to be more empathetic.
When the diagnosis process eventually took place, it was very challenging and stressful, as it involved travelling to hospitals, and a brain scan, which caused a lot of fear and anger in my otherwise lovely mum. I feel it’s important to recognise that some people who experience dementia may not ever recognise or accept it, and that we need to find a way of talking to them which won’t induce fear or frustration. Carers also need more support in relation to finding the least disruptive way of seeking a diagnosis, and we need to acknowledge the physical and emotional toll that caring for a loved one with dementia can have. In my case, it triggered a severe physical reaction that resulted in permanent physical disability. People with dementia need to be supported within their individual familial context, and individual personalities should always be taken into account.

My mother was diagnosed with dementia in 2015, the pathway to diagnosis was quite smooth, GP to memory clinic, consultant assessment at home, MRI scan which diagnosed the Dementia and then medication after which my mum attended a day centre called Bright Shadow for dementia doing music and crafts

Funding is needed for The community based groups whether craft or music to help with stimulation and slowing down the process and providing some fun and enjoyment for those living with Dementia is essential as there are some dark and stressful days sometimes

However, my father’s experience was poor, although he had signs of dementia he was never diagnosed. Admitted to hospital a couple of times with promises of being referred and although chased this it never happened this was during the pandemic . Both patents have since died ❤️

The impact on knowing your loved ones have dementia is devastating. Seeing them lose their independence becoming frail, unable to do the things they enjoy is heartbreaking . Both my parents were pillars of the community and had their own business and were very well liked , helping people all the time. They are very much loved and missed by their family ❤️