Written by Sarah Swindells, Health and Wellbeing Lead at Dimensions and Co-applicant on The Victoria and Stuart Project
I spend a lot of my time thinking and talking about death. Sounds morbid? I was recently asked by someone:
"How do you cope? Would you rather not be focussing on happier topics? Is it not a gloomy part of your role?"
Quite the opposite, I responded.
Of course, it is awfully sad that someone has died and I feel a real sense of privilege and honour as I listen to colleagues and family members of the person speak to me about the impact of the death of the person that they’ve supported and known for many years (or in family cases, all of their life). I am reminded regularly what deep and meaningful relationships we form in our roles with the people we are supporting. How colleagues, the person’s friends and their families are experts on the person; knowing the detailed intricacies of the wishes and needs of the person.
I am inspired by my colleagues who support people in a sincerely person-centred way to live a better life. They tell me stories of midnight tuk-tuk travels (with requests that the music volume be louder!), football stadium visits, donkey therapy and the comfort this brought, I listen carefully as I am told of beloved pets (who had too many treats), the person’s love of gardening, motorbikes and meeting friends locally on a Friday night. Sometimes we are laughing hysterically at a fond memory that is retold with passion and joy, other times we are crying together as I am told how sorely missed they are and what a hole they have left in colleagues' lives and hearts. Colleagues, families, friends share their bereavement with me and have strong emotional reactions because they have invested so deeply in a compassionate, kind and long relationship (the longest serving colleague knew a person for 44 years).
It tells me that people are living a life with depth, that people are valued, that people are loved. That people are never ‘a job’. After discovering the health inequalities that people face, the saddening statistics that come out in annual reports, the collective journey and responsibility that we all have ahead of us in getting this right for people and the actions for change that are needed. The stories I am fortunate enough to hear, fill me with a sense of renewed hope; people are loved citizens, cared about profoundly and that life really is for living, loving and it always comes back to relationships.
Before I finish, I will share one story that has stuck with me many years later. It is about a lady that had progressive dementia, diagnosed in her mid 40s. She had worked in a bakery all her life and when her dementia was in the earlier stages, colleagues supporting her continued to take her to the bakery, to listen to the hustle, to smell the freshly baked goods, to be in a familiar environment surrounded by warmth and love of the people that still worked there. There came a time where the lady was not able to go to the bakery anymore – so colleagues bought the bakery to her. Songs that the bakery played were humming in the background of her room, freshly baked goods were bought into the room so that the smells continued to fill the air. Friends, her bakery colleagues and family visited often and sang to her, held her hand and reminisced on the most beautiful stories with her. Absolutely everything was done to ensure she had a dignified, ‘good death’ right up to the very last moment.
I am proud to work on The Victoria & Stuart project, I am proud to be in the role I am in, I am proud to be in the organisation I work for, I am proud of (the not so) ‘gloomy part’ of my role. I am proud of the people that I meet, the colleagues I work alongside, the families I listen to, the stories that I hear (which keep me going), and shout from the rooftops how incredible our roles in Social Care are, how privileged we are and what an impact we can make daily on the lives of people. In response to living longer lives? Yes, there is a lot to do, a lot of inequalities we need to tackle head on, a lot of learning that needs to turn quicker into action. I have said this before in a previous blog but thought pertinent to repeat: our time is up for discussing and talking. The research is out there, the stats are uncomfortable to read but the recommendations are clear. We all need to work together. We all need to take responsibility, accountability and action. That time is now!