Steve lives and cares for his mum in Croydon, after she was diagnosed with Alzheimer’s 6 – 7 years ago. He speaks about the challenges of caring for someone, and how this can affect you emotionally, physically and financially.
Steve first began caring for his mum after her Alzheimer’s diagnosis, although she now lives in a care home. Whilst her initial diagnosis meant that she only needed a low level of care and support from Steve, Steve’s mum became non-responsive one day, calling for urgent help from paramedics. The recovery period was difficult, and Steve found himself spending more hours during the day to care for his mum as she couldn’t do as many tasks for herself due to being bedridden. She would also experience hallucinations at times which would distress both her and Steve. They also had paid carers visiting four times a day to support Steve’s mum.
It wasn’t until the paramedics asked Steve about whether he had heard of a carer’s assessment or had one completed, that he realised he could be receiving further support for his role in caring for his mum. He was then referred directly from the paramedics to Carers First Croydon. Steve shared how he was aware of some support and benefits that unpaid carers could receive but never gave it much thought until he became a carer himself.
“I knew of support for carers through a radio station, I knew a little bit before I became a carer. I didn’t know I would become a carer.”
Seeing his mother’s health and memory deteriorate had a big impact on Steve’s wellbeing and he experienced a role reversal where he had to be the one responsible for her, “When caring for someone with Alzheimer’s or Dementia, it feels like you start off with a full jigsaw, and you’re losing bits of it every day and every week.”
During the time in which Steve was caring full-time for his mum, his only source of income was £50 a week, and he couldn’t commit to searching for a job due to his caring responsibilities, which is something many carers can relate to. When his mum was eventually moved into a care home, Steve admits that he struggled to get references when applying for jobs as being his mum’s full-time carer left an employment gap, which many employers questioned. Whilst being a carer should be recognised as employment due to spending 35+ hours fulfilling your role, this is often unfortunately overlooked by many employers due to lack of understanding and appreciation of how much work being a carer takes. Steve currently volunteers in a charity shop, which he finds rewarding and enjoys doing.
While he appreciated being there to support his mum emotionally, Steve shares how caring could sometimes become overwhelming for him.
Having to organise the practical side of his mum’s care was often frustrating, “Even though we had carers coming in, I found it draining just to answer the door, found it quite overwhelming and frustrating that I couldn’t go out when I wanted/needed to when working out times for the carers to come each day if it was at different times.” He shares how his brother and sister would offer to help out when possible, and his sister was granted Power of Attorney for their mum which meant that all financial decisions fell to her.
Like many carers, Steve often missed out on socialising due to his caring role, “I lost out on things like social events because I had to keep turning things down, if I didn’t know if I would be able to make it. It’s very isolating being a carer. I can contact friends online, but I wouldn’t have been able to meet up in person as much due to caring for my mum.”
He expresses how being referred to Carers First has helped him to feel connected to others and make friends with similar experiences who he could relate to:
“I meet other carers at the carers centre; I find it really helpful. Even if they’re a parent carer or something, we can all find something to relate on.”
He also goes to the various events that Croydon hosts, such as the free cinema event, which he really enjoyed.
In addition to the social aspect that Carers First has improved for Steve, he also explained how our Croydon team has helped him to find support and breaks for carers, “Through the carers centre, a year or so ago I had a talk with Sue who helped me with an assessment. She mentioned I could have 50 hours of free respite care, and put me in touch with a company who could help with this.”
He feels extremely lucky and grateful that he has found a community within Carers First, where he feels understood and heard, “When Carers First took over the centre, we were worried about what it might look like. I’m glad it’s still running in-person groups. I attend a group once a month for Dementia/Alzheimer’s carers. It’s important to have a break. If it gets too bad, your health can suffer.”
Steve’s story underlines the need for support of many carers, and shows just how much taking time to yourself and socialising with others can help your overall wellbeing. If you care for someone with Alzheimer’s or any other condition or illness, whether it be physical or mental, get in touch with Carers First today.
If you have a story you'd like to share, get in touch with us at commsandinvolve@carersfirst.org.uk. Click here to find out about the support we offer at Carers First.
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