Cupcakes, butterflies, favourite books and china mugs
Three friends at St George’s Church in Shrewsbury have personal experience of supporting family and friends living with dementia. Bobbie Nugent, Joan Benford and Isobel Ankers are glad to be part of a church family which is actively engaging with dementia, supporting one another in responding to the challenges. It can be so hard to see family and friends struggling as dementia advances and patterns change.
Recently, the church ran a “cupcake day” event and raised a magnificent total of £400 for the Alzheimer’s Society. Bobbie Nugent, who has been at St George’s for 37 years, said, “Never before have I seen the vicar have to go and get extra tables and chairs!”
Joan added, “It was always cancer – the big C. Now it’s dementia. Thank goodness we now get to talk about it - years ago nobody talked about dementia.”
Isobel’s experience of hospital care has been variable. The Dementia Support Worker did a wonderful job – also caring for the family. But when it was a mealtime, sometimes staff would leave the food for the person with dementia, when in fact she needed someone to sit and help with feeding her. As it says on the Shrewsbury and Telford Hospital website:
“A quarter of patients in our hospitals live with a dementia or some form of confusion. We are working to ensure that these people and carers receive the individualised and sensitive care that is appropriate to their needs, and that they therefore stay in hospital for as short a time as possible… The work of the Dementia Support Workers includes promotion and use of the Butterfly Scheme. This scheme helps us to identify people with dementia and/or confusion by using a Butterfly (solid for a diagnosis of dementia and an outline of a butterfly for those patients with confusion). These stickers are placed on the headboards, the “patient status at a glance” board on the wards/notes/wristbands, and on investigation requests, such as to X-ray. Patients choose whether to opt into this scheme and there is information available on each ward for all patients and carers.”
Now people at St George’s are busy knitting blankets for the hospital: a colourful blanket on your bed may help you to identify your own bed – and you can take it home when you leave hospital.
There are cherished moments when someone is recognised for who they are. So Bobbie was shopping in Home Bargains with her friend who lives with dementia, when the person on the till recognised and greeted Bobbie’s friend. She used to be a teacher and it turned out that she had taught the Home Bargains staff member to read and write – and introduced her to “The Lion, the Witch and The Wardrobe”, which remains her favourite book to this day.
In church, we may need to be a bit more flexible, accepting different responses. So Bobbie commented of her friend, “She’s got it to a tee – as soon as the vicar gets in the pulpit she falls asleep”. And the vicar’s been able to respond, saying, “When I see you sitting there, it fills my heart with joy”. Equally, at coffee after the service at St George’s, when a teacup became difficult to manage the solution was to go out and get a lovely china mug, which works really well.
There’s a journey from facts to feelings, from the head to the heart, as dementia progresses – and it’s heartening to hear the ways the church family is adapting and stay in step as patterns change, noticing and affirming the light shining though in a different pattern, at this stage of life.