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 listen to her hourly struggles in order to navigate through a world she has never truly understood or felt part of. Everyone wants to feel needed but this was a different need, an endless one with no reward.
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. Sometimes they did not listen to how traumatising the situation had become and other times they just shrugged and said the prognosis was negative and that was it.
She was so mentally unwell that I honestly did not think she would be around when I graduated university. But we made it through (just) and after moving her into three different properties within a year, she currently resides within a sheltered housing facility and is getting on OK in comparison to previous years.
Most days I felt desperately sad that I couldn’t help her and then some days I felt overwhelmed with frustration at the anger and destructive behaviour that was constantly thrown my way. Then other times I felt so much guilt at the thought of not giving up my life to adhere to her every need.
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 honestly made such a difference. The assessment went smoothly and I really embraced the hour-length appointment that I was able to express my experience. It really helped and receiving the validation of my caring role made a significantly positive difference.
I still feel deep heartache for my mum. I am so sorry she lives with such deep 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 then that’s all I can ask for.
My strongest piece of advice for others in similar positions is to really know that you are in fact superheroes! It may not seem it at times but you really are. Supporting someone with a long-term condition can be so unbelievably tough and I truly believe in ensuring that you reward yourself as much as you can, especially when you encounter really challenging times.