A personal reflection - #ExpOfCare 19

Tuesday 23rd April 2019 by @SusanShears3

Susan Shears, Experience of Care Programme Coordinator, shares her personal relationship with care and how you can access help if you're in a similar situation.

Experience of Care Week makes me realise how care is delivered by so many in so many ways, from specialist clinical care to domiciliary care as well as care provided by a loved one. 

My mum who despite being 88 years old and frail with arthritis shone bright. She maintained her intellect, continued to dress with style and above all openly expressed her love and was always empathetic towards her beloved family and especially to me, her only daughter.    

Then overnight things changed and following a scan my dear mum was diagnosed with vascular dementia. I knew very little about the illness, the symptoms and the long-term prognosis. As the sole carer for my mum I realised I was going to learn very quickly how I could best support her.

Over the following months it was clear that I now had a very different mum and I went through a mini grieving process for the mum I once had. I'm strong and I will be strong for her. Although, I'm a daughter who cares and not a daughter who is a professional carer so I had many sleepless nights pondering how I was going to cope mentally.

Mum’s imagination is now vibrant, living in a world where she is absolutely convinced experiences are real. Mum’s condition certainly has me dancing to its tune, testing my patience, making me both laugh and cry. Parenting the parent is not something I ever thought about, yet it's exactly how it has evolved for me and my mum. It’s what I do now. My tireless protection of her will remain and we will make the decisions and face the future together.  

I've had a good experience of care as care workers visit my mum twice a day.  These visits will be increased until it's no longer safe for mum to be at home.  Having the reassurance that there are those who provide professional support and who provide me with the knowledge that she's consistently monitored is hugely beneficial to us both.

This allows me to have quality time together for simply holding her hand or talking about her childhood and helps me still feel close to her. I'm fortunate to work for an organisation which is committed to supporting carers, including promoting a positive working environment for colleagues to thrive while managing their caring responsibilities. 

There are many ways you can access help too.

Take a look at the carers toolkit which promotes collaborative working between health and social care services. Find out how The Carers Trust works to improve support and the vision that unpaid carers count and can access the help they need to live their lives.Carers UK also provides expert information and advice that’s tailored to the needs of the individual carer.

Please join us throughout the week on Twitter using the hashtage #ExpOfCare. Make sure you use this week as an opportunity to share your story, support and highlight all the good work being done.




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