Patricia's Story

Patricia was a full-time carer to both of her parents for 13 years, until her mother  passed away earlier this year. Patricia’s mum was diagnosed with Alzheimers and went on to have several different medical issues, including strokes and cancer. 

Patricia had to face many challenges, including navigating day to day care responsibilities, issues with local care providers, financial worries and a lack of time to socialise. Carers’ Hub Lambeth helped her to access support, attend activities, and socialise with other unpaid carers.

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“I did find some services that could support me, including Carers’ Hub. The work that Carer’s Hub does is amazing, and it is great to know that there is somebody there for us.”

I first began caring for my mum 13 years ago, when she got diagnosed with Alzheimers. Before Covid my dad was diagnosed with Vascular Dementia, and so I began to look after both parents full time. Mum became worse during the pandemic, as  there were fewer resources and we were more isolated. 

I had to leave my job, as it was a high intensity position, and I could not manage that alongside my caring responsibilities. As many people know, being an unpaid carer is often a full time role. 

I never expected to be a carer, and definitely didn’t think I would be doing that for over a decade. But I was always close with my mum, and when she got sick and needed somebody to support her, I stepped up. Looking after mum was incredibly rewarding, right up until the end of her journey in April 2025.  It was also very challenging.

Being a carer takes a toll on your mental health, physical health and finances. 

My mum needed me to be there every day. She would get lots of infections due to having a catheter bag. She had lots of health conditions. Four times I was told she'd pass away and she survived, like a cat with nine lives! Mum had sepsis several times, several mini TIAs, three strokes, diabetes, osteoporosis, breast cancer and arthritis. I think her catheter also caused UTIs and sepsis. I spent a lot of time dealing with infections, going to King's Hospital, A&E and being rushed in the ambulance, often coming out of the hospital at 3 in the morning.

“Mum’s care required my full attention, so I couldn’t have much of a social life! I do have a large circle of friends and many of them were understanding of my situation; I had to put my mum first because she needed me.”

As I was unable to work, I relied on money from the DWP, which never felt like enough, especially considering that I was looking after two people and there was a cost of living crisis. I feel like it's a full-time job without a full-time wage, and the government doesn’t notice or care.

During my caring journey, mum was also one of just 5% of cases able to access continuing care (CHC) from the NHS, saving thousands of pounds in care costs, over 6 years. I used a Social Subscriber at my GP, which relieved some pressure.

Luckily I was also previously able to get some funding via the council for additional care staff to visit and support my mum, though even organising payment for additional hours, as granted by a reassessment, led to accusations of non-payment and denial of services. Without any spare income, this was incredibly stressful, and is, unfortunately, a common occurrence.

All these stressors took their toll, and I was consistently burnt out and tired

Carers Hub helped me with these challenges. I have had one on one support, visited to see

speakers from places like Healthwatch, who then helped me with the care staff issues. I learnt that I could access resources and mobility aids via the council and my doctor’s surgery. I have even been able to speak to a lawyer about Power of Attorney for free.

“The Peer Support Group at Bellefield’s cafe has been lovely. Despite having great friends, it can be really helpful to talk to strangers who are going through the same thing as you. I enjoyed listening to other carers and sharing things that I had learnt. It was a safe place to vent and find support.”

I’ve also had the chance to go to The Oval to see some cricket, visit the imperial war museum and go to a film festival. I may have been late or had to leave early due to my mum’s needs, but the group was very understanding and kind about it.

During my time as a carer, I have used many different services, including local NHS hospitals, phone lines and even had to interact with the police when Mum would wander. I have realised that even professionals and experts have gaps in their knowledge when it comes to Dementia. I would often have to advocate for my mum, even on specialist wards, because I understood her needs better than anyone else.

Now I am starting a new journey, as I no longer need to be a full time carer.  I am not sure what the next few years will look like. My dad will still need support, but I will definitely have more time for myself and for my friends. 

I never expected to be an unpaid carer, especially not for such a long time, and it was hard. My mum needed somebody to look after her and, ultimately,  I am grateful that I could be that person until the end.