C's Story

C provides care to her son’s father, her ex-husband, following his stroke in 2022. This comes with many challenges, especially as she is multiply disabled herself.

I am a caregiver to my ex-husband, who is my son’s father. I have been providing care since he had a stroke in 2022.

I am multiply disabled myself, with chronic pain, neurodivergent conditions and mental health issues, which increase the challenges involved in providing care. I also contribute to community groups, hospital participation projects and more.

I do a lot of the day to day support for my ex-husband, with other people taking care of administrative and decision making responsibilities, as well as intimate/ personal care. As a caregiver, I do things like serve them their food, help them take medication, or make them comfortable in bed. I might also help with their clothing, or other small tasks. 

“Culturally, it is important that I contribute to his care, and members of my community understand this. My caregiving role exists at the intersectionality of race, caring status and disability.”

The relationship between myself and my ex can be a tricky dynamic to navigate. I am connected to this man via my son, who doesn’t live in London, and so I am the closest family member, in terms of distance. Additionally, I know my ex-husband better than the professionals and support staff, so I understand certain intricacies of his characteristics and personality better than them. I can feed into any conversations to do with his care and treatment from a place of knowledge and personal history.

When it comes to his medical and social care, I am not a decision maker– working with institutions and organisations responsible for his treatment is the role of his key caregiver and my son. This can be challenging, because I am dealing with the minutiae of the day to day, but have limited input in choices that will directly impact that.

Initially, I did not realise that I counted as eligible for carer support services, but my social prescriber and I had a long conversation about my situation. Through them, I found Carers’ Hub.

“I have received a lot of support from Carers’ Hub. They have been amazing.”

I am very passionate about Carers’ Hub. I cannot have anybody saying anything bad about the charity, because they've helped me so much. I think a lot of the staff members fit hand in glove with every single task they do, and can be so effective and supportive.

I have attended peer support groups and found comfort in finding others who had been through some of the same challenges as me. I have also got to do some fun activities, like arts and crafts and even went on a day trip to Brighton!

The one to one support has been crucial to me. Once I visited the office to have a meeting with a previous staff member, called James, and he noticed that my shoes would not go another mile. Without having to ask, he ensured that I would be able to leave with a cost of living voucher. I went to Marks and Spencer, and I purchased new shoes that I couldn’t otherwise afford. I treasure them to this day.

On another occasion, I mentioned to another team member that I hadn’t been sleeping well and my back hurt, because I had been sleeping on a bed frame held up by two encyclopaedias and a piece of wood. Rachel helped me to apply for grant funding from the League of Helping Hands and the South London Relief in Sickness Fund. We were successful and I got a new bed and mattress. 

Other staff have been able to help me through emotional support and guidance on multiple occasions. When my disabilities have led to dysregulation and stress, the kindness of the Carers’ Hub Team has helped me to recentre and figure out how to move forward. 

“I can always expect to see a friendly face whenever I visit 336 Brixton Road. The support I have received has helped me find a better balance between all of my different roles and responsibilities. 

Don’t get me wrong- things are still hard, with daily life, DWP conflicts, a lack of accessibility across public spaces and the cost of living crisis. But I am also at a point where I’ve been able to take on a leadership role for a community delivery group, to do some of the racialized work regarding health inequalities. I am able to contribute to my community, and know that there are people who have my back, who can help me in other facets of my life. 

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