Reflections on being carer

 As I prepare presentation about our Staff Carers Network group for tomorrows online Caring Together summit for different NHS organisation, I reflect on my life as a carer, as well as on conversations I had with people I met, stories I heard... 

I have been inspired by many people I met... 

I am thankful for all whom I met through different networks, many very special people from very diverse walks of life....

My story is about being a carer and about loosing and finding connections. 

I have been in number of caring roles: as young university student and newly qualified Child Psychologist caring for Grandma with dementia, blind and bedbound, later caring for another Grandma suffering from dementia. I was caring and supporting my Dad while he was very ill on intensive care unit. From family caring roles I moved to work/community caring roles, working with adults with LD in Canada and UK, working as TA, as Suport Worker, as Assistant Psychologist.

 Becoming Mum to autistic child brought new challenges and new gifts. Over the number of years I encountered both special moments of joy as well as pain and faced my own vulnerability through deterioration of my physical health and discovering my own neurodiversity. 

My career choices reflected the primary focus on family and care as well as juggling my own “spoons”, my disabilities and long term health conditions. 

spoon-theory-chronic-illness-explained

I was looking for creative ways to use my transferable skills and gifts, but it was not easy and I often felt lonely and disconnected, especially during Covid Pandemic. 

At the beginning of Covid I was identified as Clinically Extremely Vulnerable due to the range of my health conditions and was asked to shield. My world that already seemed very limited first shrank completely… 

However as I started to attend weekly online Shielding Forum group, organized by our HR, I began to connect with people from variety of profession and wide range of Bands, from bottom to the top of NHS Hierarchy. 

We were coming to our online group to share our experience of either shielding ourselves or being a carer for family member who had been shielding. I felt sense of connection, mutual peer support and I felt that people from HR actually listened to us when they visited forum to hear our views. I felt encouraged and empowered and began to see new openings, new possibilities to use my skills, my passion, my enthusiasm for networking,  researching, empowering people to discover beauty in them  - values that were always important to me, values that brought me to work and live in England in community with people with LD 25 years ago. 

I became actively involved in launching our trusts Disability SNG and in introduction of Workplace Adjustment and Wellbeing Passport. I became involved  in LGBT SNG and in admin side of Rainbow Badge training and I was involved in supporting BAME staff members in network and preparing Annual conference. Working from home, while shielding, learning to use MS  Teams for virtual meetings, networking, storing and sharing resources opened very new possibilities for me – especially with the permission to work flexibly around my disabilities and around my caring responsibilities. 

I kept saying to people who started Shielding forum that attending the forum became a time of personal transformation for me – I rediscovered who I was and that there was place for me in our organization to be involved and share my skills and my enthusiasm, my lived experience. 

As I became more and more involved in 4 staff network groups I realized that there were staff who were carers like me, balancing work and care but there was not a one specific network, peer support group for staff who are carers…. 

I met staff carers in Shielding forum, which was temporary group and in Disability SNG, when staff were both disabled and carers, I met staff carers in BAME, now Ethnically diverse SNG…. But not having one specific group for staff who are carers really bothered me and I wrote emails to our leadership team asking for support to begin Staff Carers Network. Our leadership team gave me support  to begin our new Staff Carers Network group…..

I share painting about Connections and Viewpoints I created in September 2021 and that expressed in creative way my sense of lost and found connections through Covid, online working, working from home….