Being a Carer: Patricia's Story

Invisible Army is an organisation dedicated to shining a light on unpaid carers. They want to make the challenges and joys carers cope with every day visible.

We are supporting their mission by sharing some of their stories. In the hope that it connects our carers’, knowing they are not alone.

This is Patricia’s story.

Patricia is a carer for her 15-year-old son, Dumisani. Due to his complex additional needs, Dumisani needs the constant presence of his mum to support him to be safe, happy and healthy.

A few years ago, after Dumisani had major surgery, Patricia was told that her son had a short lifespan and that they were almost at a point where it would have been kinder to let him pass away, as the surgeon feared Dumisani would have a poor quality of life after the surgery.

This gave Patricia the determination to work hard, gain her Mental Health Nursing degree, and work as many hours as possible to save enough to take her son on trips and holidays. She did just that. They went swimming with dolphins, kayaking, jet skiing and so much more, packing in so many memories.

Patricia wasn’t sure if she’d be able to finish her degree, as during her studies, Dumisani became very ill and other people were scared to look after him and feed him through his feeding tube. However, Patricia was determined: "Am I going to do this? Yes!"

One night while Patricia was working as a nurse on a Psychiatric ward, earning money to pay for their next trip away, it suddenly felt to her that the lights went out. She tried the light switch, but they didn’t seem to turn back on. She went into the corridor and to her it seemed the other staff had turned all the lights off; Patricia thought this may have been for the patients to sleep. She was worried as the ward seemed darker than usual. She headed to the office as the lights remained on in there 24/7, but on her arrival, the room was pitch black. Trying to remain calm to not alarm the other staff and patients she sat at her computer and closed her eyes, hoping that in a few minutes her sight would return. It didn't. Patricia's world was now dark; she could see nothing at all. She began to cry: 'Something has gone wrong’: her first thought was: ‘My son! How am I going to care for my son?!”

After a taxi home, a next-day appointment at the eye hospital, a 6-hour operation on her left eye, then the following day another operation on her right eye, some of Patricia's sight returned. She is still unable to see more than a metre in front of her, everything is grey and blurry, and to see anything clearly it needs to be magnified and held up close to her eyes.

This sudden and traumatic change to her sight led Patricia into a depression. Many tears were shed. For numerous months Patricia and her son spent many hours on their sofa together, Patricia holding her son's leg or lying down with their legs linked to know that he is nearby and safe. Travelling together stopped as Patricia felt too scared to leave her front door alone. She lost all her confidence.

After being asked: 'how are you now so positive?’ that Dumisani had only cried a handful of times since birth, however when she was struggling she cried a lot, and when she cried, Dumisani cried. She shared: I have to pull myself together for him, who is going to be there for him otherwise? No one.”

Patricia conveys that she is: 'Getting used to it now’ and that she has developed “little tricks” to help her continue to care for Dumisani. These tricks include: Cooking with the nose, taking a photo of a plate of food on her phone and zooming in to see it, and running her fingers along the walls to know her path. Patricia believes that Dumisani understands that his mum's eyes no longer work like they used to. If Patricia spends too long in the kitchen, Dumisani will come to her and put his hand on her, as if to say: ’Do you need any help?’

To get Dumisani dressed, Patricia explained that this is a time when his Autistic traits are helpful: he would take anything off that was not right, therefore if Patricia put his shoes on the wrong way, he would take them off and they would keep doing this until he is dressed correctly.

Patricia is confident within her home now but is trying to transfer that confidence to when she is outside her home. She is nonetheless happy that Dumisani is happy, safe and getting stronger.