Helen: My life as a carer

Helen is a carer for her adult daughter, who is 26. Helen and her husband also have a 28-year-old son who lives in London. As a family, their caring responsibilities have changed as she has grown, along with the support available.

‘My daughter is a very determined young lady. She was born with microcephaly and also has a learning disability and Generalised Anxiety Disorder. On a weekly basis, she is out and about, taking the bus to her volunteering role at a café, walking her dog Daisy and going to the gym.’

These activities are only possible due to her mum Helen organising and supporting her daughter with her timetable.

‘Her colleagues describe her as a ‘breath of fresh air’; with her good people skills and – currently – purple hair, she certainly is! She is very aware of her situation and abilities, which can be frustrating for her as she knows her own mind and is keen to live independently and explore a role in working with animals.

‘As a family carer of my adult child, I’m both a mum and a carer. I’ve had a lifetime of experience working with social workers and advocating for my daughter in different situations, which has given me a lot of patience! When your child grows up, you perhaps expect things to be easier, but for those caring for an adult child, another layer of stress is added in trying to set things up for their adult life. When my daughter was sixteen, the transition to adult care started.

‘My husband and I were both working parents and our son was also a teenager, which meant we already had a lot on our plates, and suddenly had to learn how to advocate for our daughter in a seemingly completely different system. From navigating a new financial system, battling to ensure the level of support continued and applying for the right type of supported housing; what most people have to do once we have had to re-do multiple times due to the inconsistencies and lack of understanding in the administration.

‘Now we are getting the support we need, and a lot of that is because of Sini, our Carers Advocate, and the Carers Forum. Although the family carers I meet through the Carers Forum are all in different situations, with different needs, we’ve all had a lifetime of caring, so our focus is on finding solutions and ways to work together with the professionals. Sini invites guest speakers to our sessions, for example from the Council, and is great at keeping everyone emotionally level; she really gets it. Having an advocate who knows how things work is invaluable – without her support I’d really feel a lot more lost and alone!’

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