This month held both great sadness and great joy for me; I gained a beautiful grandchild, but also lost a dear friend. The friend had dementia; her daughter lives abroad and I’ve long had “extra daughter” status and been Power of Attorney. 

I’ll really miss Joyce – a thoroughly sweet and loving lady who always wanted to care for those around her. What was therefore poignant was that she was cared for at the end in a Butterfly Scheme member hospital and her Butterfly symbol alerted the very caring staff team to the specific care approach they needed to take. When I left after visiting, it really was very reassuring to me that the entire team knew her care needs and would meet those needs.

As I sat there by her bedside, filling in the carer sheet with all those special things about Joyce that would help the staff team care for her appropriately, it really brought home to me how far the campaigning had taken the hospital experience of someone living with dementia. The staff now knew which names would comfort Joyce, what she liked and disliked, what would soothe her and what was important to her. At that moment, it really hits you in the face just how individual we all are and how important it is that hospital teams understand our specific situations, especially if we can no longer let them know for ourselves.

In addition, though, something rather remarkable happened: I was given my Butterfly Carer Passport! Imagine – something that had been a dream all those years ago, something I’d campaigned for and co-developed with member hospitals, suddenly applied to me personally! My Carer Passport ensured I was treated as a valued part of the care team – and it was the practical acknowledgements and support that smoothed the way through a stressful and upsetting time. I was given mugs of tea when the trolley was doing its rounds, so I could stay and care for Joyce and not have to go off to find drinks.

I didn’t need to worry about visiting hours, but instead was welcomed onto the ward whenever I felt it was appropriate to be there. Another potential worry was set aside because the Carer Passport entitled me to free parking, so I didn’t need to be clock-watching when what I wanted and needed to be doing was helping care for Joyce. I always knew that these things would really help carers and, in turn, help the hospital team, but it was a really powerful experience to have that status myself.

Another potential worry was set aside because the Carer Passport entitled me to free parking, so I didn’t need to be clock-watching when what I wanted and needed to be doing was helping care for Joyce. I always knew that these things would really help carers and, in turn, help the hospital team, but it was a really powerful experience to have that status myself.

Despite the sad outcome, that hospital stay ensured the calmest of final days for a much-loved friend. In years to come, my new grandchild will be told about her – and I’ll always value the very practical support I was given at such an emotional time