The reality of being a carer

Guest post by Rebecca Fuller

Rebecca Fuller is a public speaker and writer promoting understanding about wellbeing, dementia and support for carers. Rebecca is a former carer for her mum and shared her story with Care for the Cares to mark this year’s Carers Week.

“I was at university when I felt the full force of caring for my mum. She had struggled with mental illness and autistic spectrum disorder throughout my life; however, it was at this point that she had her worst emotional breakdown and the role reversal truly began. I became mum to my mum.

Caring for her consisted of trying to fulfil a continuous need. She needed to hear my voice, gain my reassurance, my support and for me to guide her through her hourly struggles, in order to navigate through a world she has never understood or felt part of.

I received desperate phone calls from her daily about how much she did not want this life anymore. I took her to endless appointments with mental health teams, psychiatrists, social workers, psychologists, GPs, housing officers, all in a bid to try and improve her quality of life, with little avail. In the majority of appointments no one listened to how truly traumatising the situation had become and other times they just shrugged and said the prognosis was negative and it would not improve. I would often see my mum’s life flash before my eyes, as well as my own. Acceptance of her conditions and acknowledging my own grief has been beyond challenging and the knock-on effect from caring for her has felt as though it has obliterated me.

She was so mentally unwell that I thought she would take her own life and I lived in constant panic. But we made it through and after moving her into three different properties within a year, she currently resides within an assisted housing facility and is getting on better in comparison to previous years.

So many emotions

Some days I am desperately sad that I haven’t been able help her have a better quality of life, other days I feel overwhelmed with frustration at the anger and destructive behaviour constantly aimed in my direction. Then other times there is the overbearing guilt at not giving up my life to adhere to her every need.

What has helped?

In one of the many appointments with social workers, somebody must have noticed the pain in my face and offered me a carer’s assessment. This was the first time my role had been acknowledged and it made such a difference. The assessment went smoothly, and I really embraced the hour-length appointment where I was able to express the reality of my experience. The person carrying out the assessment shared such strong empathy and gained a real grasp on my experience which was hugely validating. I can honestly say that conversation changed my life. It affirmed that I have really done my best to care for my mum, even though it has been impossible.

My advice

My strongest piece of advice for others in similar positions is, please know that you are not alone and that you are doing your best, even though it may not feel that way! There are support services for carers available and they can be so helpful. Being in a space where you feel comfortable to share your own experience and also hear from others may be useful in reducing your isolation.

Supporting someone with a long-term condition is so unbelievably tough and I truly believe in ensuring that you look after yourself as much as you can, especially when you encounter those really challenging times.

I still feel deep heartache for my mum. I always will. I am so sorry she lives with such overwhelming emotional pain, worry and confusion. Nothing will really ever make me feel better to see someone struggle so much and encounter so many continuous difficulties, but if I can help even a little bit by sharing my experience, then that’s all I can ask for.”

Thank you Rebecca, for sharing your story. If you are a carer and would like to know more about getting a Carers Assessment, or the support available to you then please do contact us on 01323 738390 or info@cftc.org.uk, we are here to help so that no one is left to care alone.