More than four decades of caring
Anna is a member of Islington Carers Hub. She has been caring for her daughter, who was diagnosed with kidney failure from birth. Speaking at the Islington Carers Hub event on Carers Rights Day, she shared her family’s story – the challenges of working full time while raising both her children, alongside the intensive caring responsibilities required to support her daughter in managing her condition. She also shares some of the joy of being a carer and the closeness they still have as a family.
The rollercoaster of the early years
Her daughter is now in her forties. For the first seven years of her life, Anna managed her dialysis at home. At seven years old, her daughter had a transplant, but heartbreakingly, it did not take. Six months later, she received a second transplant, which lasted for seven years. At fifteen, she returned to dialysis.
As Anna’s daughter grew older, she was able to take over her own dialysis. Hugely independent and determined, she went on to earn a degree with honours and then a master’s from London universities.
“She wanted to be equal to everyone and didn’t tell people about her condition. It was only at the end that her tutors knew. When she was studying, it wasn’t practical for her to do dialysis every day. Instead, she would go to the hospital every other day for a five-hour procedure.”
Anna kept a record of everything, including statistics, creatinine levels and the ups and downs. “As a carer, you live with the agony, the stress of every single day when it’s your child. There were other problems along the way – anaemia was often an issue and for a while my daughter would only eat very small amounts.”
The challenges of working full time as a carer
She also described the realities of combining caring responsibilities with working. “When my daughter was young, I worked as the manager of a Mothercare branch in Hackney. The dialysis needed to be done four times a day. Living in Islington, I would drive home at lunchtime from Hackney, then get back for 6pm to do the third procedure, have dinner, and at midnight, complete the final one. I would use up all my holidays managing the condition and attending hospital visits.”
“Mothercare, my employer for nearly ten years, was very sympathetic. I remember a time when I had to park for an appointment and my car was towed away. Incredibly, our area manager arranged for me to have a company car until mine was released. I don’t know how I would have continued to cope without that gesture of support.”
Caring as a family effort
Anna’s son also played a significant role. “As a teenager, he sometimes took my daughter to hospital appointments and did the laundry – taking it to the launderette every week, drying it, folding it all up. He went on to study at Imperial College and is now a civil engineer. I have been blessed with very good children. I do, however, feel very sad that my son didn’t really have a teenage life in the same way as others his age.”
“Looking back, I wonder how I managed, but as a mother you just step up to what’s needed for the welfare of your children. We just had to take each day as it came.”
Facing struggles with the medical system, with some wins
“Caring for my daughter, we’ve faced many struggles with doctors, hospitals, and the wider medical system. For example, every time we went to the hospital. Every time we went to hospital in an emergency because my daughter was feeling really unwell, we had to go through A&E and endure a four- or five-hour wait. The staff there are generalists rather than specialists, so they often tried to insert a cannula into veins that weren’t suitable, and they did it without using a scan. This would damage the vein. We campaigned for a medical passport for people with long-term illnesses to bring to hospital, so staff would be aware of important details like this. At Guy’s Hospital, they now have a specialist renal unit where we can go directly.”
The frustration of not being able to pursue a career
Today, Anna’s daughter does haemodialysis which she does every two days. The procedure lasts 5 hours, leaving her exhausted for the rest of the day. On the other day, she generally feels unwell and because of her condition, she feels she hasn’t been able to get back what she put into her education. She has also done charity work during times when she hasn’t been working which is rewarding but not being able to advance in a career of her choice in finance, economics and management has taken its toll on her emotionally.”
The closeness of our family ties
“My daughter lives with her husband, who is a lovely man and very supportive. But they still need a lot of support. I still accompany my daughter to hospital visits and help them with the day-to-day chores of life. We are as close as ever.”
“My whole life has been for my children. I have periods of sadness and depression, but it’s good to look back and see how I’ve helped them get to where they are now. As a Greek woman, I felt a stigma around looking after my children on my own when my husband was abroad working. This probably made me even more protective. We also had a lot of fun though. In the summer we’d do things like have picnics in the park and go to museums in the winter. I am also incredibly grateful for the support that we have received through the NHS.”
Enjoying retirement and finding new connections
Asked how she describes retirement, Anna said, “Heaven! “Now I have more time for myself, I am trying different things every day. I saw an event in the Islington Carers Hub newsletter and started going to St Luke’s Community Centre every Tuesday. I’m also taking part in the regular Islington Carers Hub Strategy Steering Group, which meets every two months, to share some of my experience as a carer.”
Reflections on sharing
Reflecting on sharing her story, Anna said, “When I was younger, I avoided talking about my caring experience because I didn’t want anyone to feel sorry for me. As I’ve grown older, I’ve become more comfortable opening up and I hope others will find it helpful. We’ve faced many challenges, and this article touches on some of them. One day, I feel I should write a book to share the full story.”
Do any of these themes seem familiar to you?
If you are a carer for a member of your family, or partner, do get in touch with Islington Carers Hub – 020 7281 3319, info@islingtoncarershub.org or add your details to the Contact Us form.
It’s a gateway to meeting a network of other Islington carers and local support.
