By Hannah C, whose mother has a diagnosis of LBD After my mother’s first diagnosis, I realised I knew nothing. There was no escape from the fact that I was now responsible for my Mum, and I had to learn how I could help. I bought books. I joined websites. I scrolled through forums, but found them overwhelming, and lacking information specific to mum and our situation.
I’ve found that becoming that expert in Mum, what she needs, has been my approach. Learning a new way to communicate has been key, based on emotion and need, not fact and logic. It’s hard, and is another sort of loss, but ultimately rewarding. Since we started out, I wanted this organisation to be genuinely led by the people it aims to help. And until now, despite extremely limited time and resources, we’ve been able to do that in some small way. However, Esther and I feel that if we are to really start delivering on our aims, the time has come to make some notable changes.
By Esther Boyd, who began the Lewy Buddy UK peer support group, now part of LBSNUK. Esther cared for her husband who was diagnosed with LBD in 2011, until his death in 2019.
|