Dorothy has been caring for her brother, John, for 24 years after he experienced a brain hemorrhage which left him unable to carry out household tasks independently. Since he was diagnosed with various other conditions, including dementia, prostate cancer and lung and kidney problems, she is dedicated to ensuring he receives the care and support he needs.
Dorothy supports John with hospital appointments, sorting through letters, finances, and ensuring he takes his medication. She tries to maintain some independence for him by showing him how to complete administrative tasks, which also would allow her to have some time back for herself. Dorothy initially had suspicions that something was different about his behaviours, which helped them to receive a diagnosis for John:
“Before he was diagnosed with dementia, I realised he wasn’t taking care of himself. I thought something wasn’t right, so I looked into dementia. I realised that he needed help, I struggled for a good two years to get someone to come in to help with cleaning the house, as he would not allow me to get a cleaner, so this was something I was spending time doing.”
Despite numerous attempts to access support from social services, Dorothy and John did not receive the help they wanted and rarely had communication or responses back from them.
“He had a hospital social worker after his brain hemorrhage. On one occasion they asked me to help him when they were not available, after that they never contacted me again. Therefore, I tried my best to find help, finally obtaining a job which he could manage to do right up to the pandemic after which his role was no longer required. I then contacted Croydon Social Services, who recommended a Personal Independence Team consultation, this resulted in my seeking new voluntary work for him which led us to MIND in Croydon. He still helps there even with the Dementia diagnosis in 2025."
Since connecting with different carer support groups, including ones in Croydon, Dorothy has felt more supported and as though she can share her feelings with others who truly understand,
“I had a conversation with someone at the carers centre in Croydon. I attend a carers group, that has been a bit helpful. I also attend a carers group with Age UK and I’m finding it very helpful hearing other people’s stories.”
There are moments when Dorothy is able to do something for herself, rather than focusing on caring for her brother, such as when there are gaps in hospital appointments. She’s also very involved in her local church, and takes comfort in knowing that she can express herself through her spirituality, despite how physically and mentally tiring caring can be at times. She expresses how she wishes she had the time and energy to do more of the things she loves, like day trips.
Having been her brother’s carer for 24 years, Dorothy feels a sense of responsibility to be there for him. While support from systems like social services would be appreciated, she has always felt as though it is her duty as a sister to be there for John, “I just accepted to be his carer, I’ve never said I can’t manage. Even though there have been times where I can’t. I have never asked for help with anything. Just to know he’s safe and he gets the help he needs with me being his carer, is rewarding for me. Also, there are times when I feel I want to go off on my own and do something. Most of my time is accounted for, for my brother. We have a sister who is willing to help, however I find it difficult to ask for help from her because she works full time and I am retired.”
On top of managing John’s medical appointments, Dorothy also suffers with hip and back pain, for which she has needed an operation but continually postponed in order to help her brother out. She acknowledges that this has been a turning point and helped her to realise that accepting help from others and organisations is necessary for her own benefit as well as John’s.
For so many carers, their energy is spent on ensuring the person they care for is looked after. It’s essential to make time for yourself, when possible, even if it is just speaking to a friend, which Dorothy enjoys doing. Reaching out to carer groups has been a lifeline for Dorothy and lets her know that she is not alone in her experiences.
Dorothy wants people to understand that, while caring has its rewarding aspects, “your life becomes that person’s life. You haven’t got your life anymore. His needs come first, and mine are in the back. Your life revolves around the person you’re caring for and it’s not always easy.”
Dorothy’s story is one of true strength and determination to ensure her brother, John, receives the care he needs. Like many carers, putting her own needs first is not always easy or possible, however she recognises that maintaining her own life and desires is just as important and necessary.
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