Experiences of Lewy body dementia can differ but for everyone, it is life-changing.
We are sharing the personal stories of people who are living with a diagnosis, their family members and friends to inspire and instil confidence in others in a similar situation and educate those who are less familiar.
My partner Chris was diagnosed with early-onset Lewy body dementia at the age of 60.
Chris is a very active campaigner, gives lots of talks and is an ambassador for several charities, including The Lewy Body Society. I want to support her to do these things and live her life as she wants to, but the support she requires has significantly increased since the pandemic.
Chris has gone from being a person being able to travel to meetings on her own and giving talks, to now needing much more support to do this. She needs someone to accompany her and needs reassurance.
Chris was classed as clinically vulnerable and wasn’t allowed to leave the house for significant periods of time, not even to have a walk. Due to this her mood and symptoms have declined, and she has lost confidence. This directly impacts on the time I have to look after my own well-being.
I care for my dad who was diagnosed with Lewy body dementia in 2020 at the age of 74, having previously being diagnosed with Parkinson’s disease. Dad has always been very active. He was a semi-professional footballer and a bricklayer, and he and Mum have been married for 55 years. Mum is Dad’s main carer, but my sister and I visit every week and take it in turns to stay over weekends to help mum, as night times are very difficult. I work full time as a design manager. My employer is supportive, but it is a lot to manage.
During the periods of full lockdown there was no support available, so Mum was left entirely responsible for Dad’s care. As a result, her own health suffered severely, and my sister and I had to take time off work to look after both Mum and Dad until Mum was well enough to care for Dad again. We were desperate for restrictions to ease to allow care and support in the home, and also for local support groups to open back up.
There’s a quote from Roald Dahl’s ‘Danny the Champion of the World’ which Dad used to read to me as a child and which I recently re-read to him. Danny says: “What I’ve been trying so hard to tell you all is simply that my father…was the most marvellous and exciting father any child ever had.”
Well Danny, mine too and, despite the best efforts of Lewy Body Dementia (LBD), it’ll never take away the greatness of dear Dad. Caring for him was one of the greatest privileges of my life and also one of the toughest.
After an unexpected three-month stint in hospital (swallowing food incorrectly resulted in bacterial pneumonia and sepsis), we managed to get Dad back home. I moved back in with Mum to help take care of him as he was now bed-bound and I confess, I had no idea about what caring for someone involved.
The district nurse said once “I don’t think any of us expected him to last very long but it just shows what home care and love can do”. I am so grateful to her for that.
Caring for someone is A LOT.
If you or a loved one has been affected by Lewy body dementia, share your story with us. Your experiences can help raise awareness about the disease and inspire others to get involved in the fight against it.