Ina’s story

I have been a carer for my 19 year old daughter since her birth. She was born with a severe muscle weakness. It became obvious within weeks that there were some issues with her strength and that her hips were dislocated. The first year was filled with tests, medical and physio appointments. She was operated on her hips at 10 months old. We had a diagnosis at 11 months although that did not give us a clear idea of the degree of her weakness. Although she was expected to only have a delay in her motor development, she did not learn to walk or stand.

“I have been a carer for my 19 year old daughter since her birth…The first year was filled with tests, medical and physio appointments.”

I started exploring wheelchairs when my daughter was 2 1/2 years old. Wheelchair services said that she would not be allowed out in the chair which completely defied the purpose of getting her one. We started fundraising privately and trying out different chairs. My daughter was four when she finally got her wheelchair. By then she was utterly fed up with sitting in her buggy. It was the single best thing we did for her – the night the wheelchair arrived, she said that she loved it so much she wanted to hug it. It was the first time she could go anywhere she wanted when she wanted and she loved the independence it gave her. I still see her tearing down our street, with her fist raised in the air, lost in an imaginary game. She also loved freaking me out by driving the chair right up to the decking in our garden, nearly crashing into it.

Becoming a carer – although it took a long time to call myself that – took over too much of my life. Looking back I wish somebody would have REALLY impressed on me that I was at the very start of a marathon and that I needed to learn to let things go, take breaks, look after my back, be efficient rather than assess every detail before making a decision, stop myself obsessing over problems and concentrate on the joys in life more.

“Being a carer can feel lonely.”

I stayed home and became the admin and project manager for everything related to electric wheelchairs. Being disabled or a carer means that your life is suddenly filled with appointments with health professionals and local services – equipment, wheelchair, education, community and social services. Getting my daughter into mainstream playgroup and primary school involved endless meetings, getting a statement (equivalent to an EHCP now) to have funding for constant 1:1 support and adaptations to buildings that weren’t wheelchair accessible. There were services and professionals who were great – my forever champions are the community physios who made a lot of inclusion possible, Parent Partnership (now IAS), Contact (a charity that helps families with children) and the wonderful Outreach Service from Lancasterian School (LOIS). Institutions such as the Donkey Sanctuary and Charnwood (a mixed ability nursery that had playgroups) helped me find my feet, supported my daughter’s social and physical development and gave me a break from mainstream walking world. Being a carer can feel lonely. Friends and family often first need to find out about the barriers one faces on a daily basis and it feels like constantly asking for special treatment. I learned so much from all of these professionals with regards to inclusion and how to advocate for my daughter.

“Looking back I wish somebody would have REALLY impressed on me that I was at the very start of a marathon and that I needed to learn to let things go, take breaks…stop myself obsessing over problems and concentrate on the joys in life more.”

At times, I experienced the inability of medical consultants to find humane ways of communicating – my favorite: ‘We’ll see if she is a walker before we decide whether to operate’ from a surgeon. He forgot to mention that she would never learn to walk with a muscle weakness if she had two displaced hips. Enabling my daughter to be included often became stressful and overwhelming. Services at times were amazingly unaware of the facts – favourite here: ‘can’t you bump your daughter’s wheelchair into your house?’ – no, it’s electric and weighs 100 kg (close to double my own weight). The good thing was that I always found allies who helped me to find a way forward. I enjoyed coming to grips with all these different projects, despite the stress and tiredness. In later years I learned to pencil in breaks – pilates, swimming, friends, activities and creative courses with Carers Manchester. I realise that I was priviledged to afford to stay home since my husband earned enough – a choice that many do not have.

My daughter has gone to university. She is enjoying uni life. We are still facing challenges, and we continue to support her but I have a lot more time. I have become involved with the Lived Experience Panel which is a group of carers who work on different projects related to carer services in Manchester. It’s a great experience and I have finally come to the point where I feel proud to call myself a carer. I still battle with the perception of carers, that I often encounter, though – as people who are a bit downtrodden and need pity and lots of positive feedback. Caring is quite the ride but it also enriches your life. I wish it was easier and that more people would understand the barries that carers and their loved ones face better. I wish that more services would be able to be supportive and not hindered by health and safety regulations and lack of funding. Most of all I wish that social services were not in such a mess!

“I have become involved with the Lived Experience Panel which is a group of carers who work on different projects related to carer services in Manchester. It’s a great experience and I have finally come to the point where I feel proud to call myself a carer.”

I know that my caring experience differs from those who have children who remain dependent on them. I recently attended a meeting with a carer’s group who were approaching their 60s and 70s and still had their adult children at home. They felt dispirited by the lack of support after their children left education. Unpaid carer’s lives are often relentless despite their enourmous contribution to society. The Centre for Care research found that the economic value of the support provided by unpaid carers in the UK is now £184 billion a year. They deserve better support, rather than being relied on to work without breaks and little support. Despite the challenges they face, carers are resilient and experienced. They have a lot they can contribute. I am very encouraged by the fact that this is starting to be seen more and carers are involved in shaping services and policies.

“The Centre for Care research found that the economic value of the support provided by unpaid carers in the UK is now £184 billion a year. They deserve better support, rather than being relied on to work without breaks and little support.”