“I was born in Pakistan in 1962 and came to England when I was four years old. I had a lot of fun growing up in Pakistan but coming to England was a great adventure. 

“My caring journey started the day my brother, Saeed, was born in 1969 and this changed everything in our lives. He was born with Microcephaly, a condition where the baby’s head is smaller than expected, which can occur because the baby’s brain hasn’t developed properly during pregnancy or has stopped growing after they are born. 

“My parents struggled to cope and, without realising it, at eight years old I became a sibling carer. All I wanted was to please my parents and take away some of their burden. I tried not to make any demands for their attention, but I also felt invisible to them.  

“I assumed my caring role from a young age, playing with my younger siblings, feeding them, changing their nappies and seeing to their every need. As a family we did not receive any financial help as my parents didn’t know what support was available. 

“I grew up quickly and looked after myself, but I struggled to juggle schoolwork and home life. If I went to the library or played with friends, my three siblings came with me. Picture me at 12 years old responsible for two children and my disabled brother, Saeed, in the buggy. I missed out on so much.  

“When I was 15, Mum was expecting again so my father took me out of education and we travelled to Pakistan. I was angry; I did not want to leave at such a vital time in my education. When my brother Irfan was born, I knew straight away that he also had Microcephaly. The Pakistan experience was challenging. The community came to stare at my brother, which hurt me, as I discovered that my own people could be so cruel. This is when I realised that disabled people are not valued.  

“At 22 years old I was so happy when my parents arranged my marriage to my first cousin. At last, no more caring! Or so I thought. I still supported Mum and cared for my brothers during evenings and at weekends to give her a break. Only I could see the day-to-day difficulties she faced with minimal support.  

“I encouraged Mum to allow Saeed to move into care. At that time there weren’t person-centred care plans, nor were his needs and wishes considered. It felt as if Saeed was plucked from his home and placed into the first available residential home. As a family we were naive and trusted the care system. 

“Saeed was so unhappy; he stopped eating, didn’t allow personal care and showed challenging behaviour. This is not what we expected or wanted for him. We made regular visits, but it broke our hearts to see him. He was not the Saeed we knew and loved.  

“My husband couldn’t bear it any longer and said we had to get Saeed out of there; he asked me if Saeed could come and live with us. I told him how much responsibility I had from a young age and that I didn’t want that life anymore, but I didn’t like seeing my brother in distress. I made it clear that it would be extremely hard to take on this responsibility and I couldn’t do it on my own. He said he would support me and share the responsibility, so Saeed came to live with us. Six months later Irfan’s future was being decided and my husband and I didn’t want him to go through the same process, so he moved in with us too.  

“These decisions changed our lives. It felt like all my hopes and dreams were diminished. I was working full time as a nursery officer and had two young children. Trying to juggle work, family and caring for two young men with learning disabilities, challenging behaviour, epilepsy and elements of autism was very hard. My brothers’ care plan said they needed constant one-to-one support, yet here I was doing it all on my own. Putting the right care package in place and building a good routine took years of work, but my priority was my brothers having a happy and meaningful life. The only support I received was two weeks of respite when my third child was born, after which I returned to work for six months before realising it was too much, so I made the difficult decision to give up work. 

“My family were demanding of my time and always criticised me. My father didn’t want me to be a carer as he felt that it was my Mum’s responsibility. My community stereotyped me saying ‘she gets a lot of money and social services help her with everything’. 

“This made me determined to show everyone that my brothers do have a place in society and are beautiful human beings, which cannot be measured by money. 

“By 2003 the health of both of my parents had deteriorated. My father had to wear a breathing mask and take an oxygen tank everywhere he went. I worried how I would explain to my brothers should anything happen to him. Would they understand? When my dad passed away, I had no time to mourn for him as my worry was how my brothers would take his loss. At the funeral, family and friends ignored my brothers and didn’t even convey their condolences to them. This hurt so much. 

“Mum died from bowel cancer and after witnessing both of my parents’ deaths I have decided that my brothers should live independently of me. But it would need to be in the right supported living environment for them, where their cultural and religious needs will be met, and close enough for me and my children to pop over and give a helping hand. I know it’s the right thing to do but it is very hard as a sibling to let go of the strong bond that ties us together for life. 

“Caring has been stressful and fatiguing. There have been many crises and the lack of extended family and professional support has, at times, left me at breaking point. But being a lifelong carer has also led to many positive experiences and opportunities for me to grow and develop. I recently discovered Sibs, who are a charity for siblings of disabled children and adults, and they have helped me recognise myself and be proud to be a sibling carer. 

"As their carer, I became a mother to my brothers. I am looking forward to becoming their sister again.”