Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK.

This week, Carers Week is 5-11 June and the theme is 'Recognising and supporting carers in the community'.

Elaine Deehan is a member of the National Dementia Carers Action Network (NDCAN) and in a special blog for Carers Week 2023, she has shared her personal experience of caring for a loved one whilst working,  

Elaine and her mum
Elaine and her mum

Caring for mum

My mum has vascular dementia. I became a carer when my father died suddenly in 2012. My parents were co-dependent on each other, and mum’s routine was changed overnight. 

I was living in the South of England and working full time as a Nurse Manager managing two departments. During the next two years I travelled up to Scotland often, meeting with social workers, carers, her GP and the bank, shopping for mum and gardening. This affected my mental health as I was doing too much. I changed jobs to a less demanding Monday to Friday role and cut my hours.  This meant dropping a pay scale.

I started to receive more phone calls about mum from concerned neighbours, strangers and the police. This distressed me to think of her alone, I considered moving her in with me, but she loved walking and visiting local cafes. I lived in the city - she would have got lost. She had a good community support network. Along with my partner, we made the decision to move in with mum in 2015. This was a huge decision for my partner, but he understood my distress. He also gave up a job he loved and left his friends behind.  I managed to get a part time post at the local hospital, again reducing my pay.  Nursing is paid on a Band system; I had been a Band 7 and had to reduce to a Band 5 as it was a community hospital with very few job prospects.

Moving to Scotland

We sold our home as I felt unable to manage renting the property from 500 miles away. I regret that decision to this day, but realistically we had little choice.  

Within a month of us moving up mum’s dementia deteriorated suddenly after a fall in the street while I was at work. Overnight she became doubly incontinent and needed around the clock care, I gave up work to look after her.  My employer was understanding and kept me on a temporary post.  I suddenly had little income and my partner couldn’t find work in a rural community.
I withdrew my pension early so that I would have an income.  I would not have considered this if I had not been in this situation, but carers allowance was a pittance.  We decided it best if my partner claimed the carers allowance so that I could work (when I could) around my caring role.

Moving forward

Eight years on my mum is now in care and is self-funding. We had reached crisis point in trying our best with caring, but it was exhausting with no other family support, and we were both becoming ill.  Now, I get to spend quality time with mum without all the stress.  I am 63 years old, too late to take out another mortgage. We are in the situation where we are living in mum’s home which will pay for her care home fees. We do not have sufficient savings to buy our own home and we feel very uncertain about our future and feel that our lives are on hold. The emotional impact on carers cannot be underestimated. 

Carers everywhere are in similar situations, which is why I campaign. The care system is broken, families need support and carers should not be penalised for caring for someone they love. 

We desperately need more government funding and restructuring of the care system with fair pay and education for our carers everywhere who do the most important job in the world. The way we treat the most vulnerable reflects on us as a society. Please support our Fair Dementia Care Campaign at Alzheimer Scotland.