In the shoes of… Barbara Hodkinson | Founder of the Butterfly Scheme – Part 1…

When Betty, my Mum-in-law, was in hospital – sadly for the last few months of her life – it would have made a huge difference if there had been a discreet butterfly symbol at the top of her bed. Not the butterfly symbol itself of course. Symbols mean nothing. What I mean is the full meaning of the fabulous Butterfly Scheme. A discreet way of identifying people living with dementia and ensuring that well trained staff know that this person needs a little more attention, a little more understanding. A little more delving to find out how the person is feeling. Quite probably,  frightened, bewildered and totally disorientated.

In the later stages in particular, people with dementia can be desperately confused by being in hospital. A vicious spiral is set up and decline can be very rapid – I wish with all my heart that we could have avoided this fate for Betty but she had broken her coccyx. The apparently innocuous fall (she told us at the time she just ‘sat down’) occurred while Betty was walking back from the shops – ironically struggling with a trolley full of shopping she didn’t need but bought every week due to her OCD.
But that’s another story.

In one particularly windowless, grim hospital ward, Betty was convinced she was in ‘the basement.’ Only ‘logic’ told me that her reality was ‘wrong.’ The Butterfly Scheme helps a person who can perhaps no longer express their feelings and desires but who nonetheless has these feelings and desires. Just like any human being…

This is a particularly fitting time to feature a guest blog from Barbara Hodkinson, Founder of the Butterfly Scheme, as part of Dementia Awareness Week and as the 100th hospital takes up the scheme! Congratulations Barbara!

Here, in Part 1 of her blog, Barbara tells us more…

Barbara Hodkinson P1000160Fifteen years ago, my mother received a dementia diagnosis and I became her carer. She moved from seventy miles away to live in a flat next to me and we settled into this new way of life. At that stage, I was a busy mum of girls aged nine and seven, teaching German part-time and always on the go. Mum was soon happy; it all seemed relatively simple.

When Mum – still that same, loving mum and grandma – died of dementia two years ago, she’d been in a care home, two minutes away, for over three years. When was the moment, during the thirteen years since diagnosis,  that it became untenable to continue at home? Ah – now that’s a question I’ll never be able to answer.

For me, like so many thousands of carers, the changes had come along so gradually that they were rarely noticed. The first time something new happens, it’s dealt with as a one-off, then it happens again, then again, and it becomes accepted as part of the new normality; the straws keep being added to the camel’s back and the camel copes. The carer learns so many new skills along the way – so many insights, so many techniques – but often doesn’t realise how enormous that skills-base has become.

Life was good. That’s to say, I was determined that Mum’s life would be good. In her home setting, and at the brilliant, zingy, make-you-feel-fab day centre that in the later years became her second home (thank you, Bay Tree!), things went relatively smoothly.

Of course, sometimes we’re not at home; for example, we all need hospitals from time to time. As soon as I started taking Mum to hospital appointments, I realised that things went wrong there because of her memory. Soon, I could tell you in advance what would definitely go wrong during a hospital visit because of her memory – or rather, because the hospitals didn’t have a way of adapting the system to her memory-status. One particular hospitalisation gave me twenty-two days (instead of the expected five to seven days) to reflect on what typically, routinely, relentlessly goes wrong, and why – and, more to the point, how that situation could be turned around. I realised that hard-working, well-meaning hospital care was often inappropriate and potentially dangerous to a person with memory-impairment but that, routinely, hospital staff were delivering that care without ever knowing that their well-meant actions were directly contributing to the extended length of stay that is so typical for people with dementia.

And why would anyone expect that to be otherwise? After all, it had taken me years to learn the techniques I’d acquired – and a lifetime to know this lady so well that I could tune into all the nuances of her actions, reactions and needs. Why do any of us expect hospital staff to know something they’ve never been taught? As a teacher – and a skills teacher at that – I began to form a plan …

To be continued…

About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives.
This entry was posted in compassion, dementia, education, Guest blog, health, personalisation, safeguarding, social care, TLAP - Making It Real, well-being and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

1 Response to In the shoes of… Barbara Hodkinson | Founder of the Butterfly Scheme – Part 1…

  1. Pingback: In the shoes of… Barbara Hodkinson | Founder of the Butterfly Scheme – Part 2 | Whose Shoes?

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