Carers Stories

We understand that you will have many questions about how Carers in Hertfordshire can support you in your caring role. Here are some real stories that carers and bereaved carers registered with us have told us.

If you would like to share your experience of carers in Hertfordshire, please get in touch with our Communications team, who will be happy to hear from you. Please contact the office or email comms@carersinherts.org.uk

Hayat’s story

Hayat is mum and carer to her two young sons who were born with Fragile X Syndrome, a genetic condition that can result in developmental delays. She cares for them alongside her husband and works part-time job as a Care Worker, a job she’s had for 21 years. Her eldest son was diagnosed when he was 18-months-old. He also has epilepsy, learning difficulties, is autistic and cannot communicate verbally. In March 2013, her youngest son was born with kidney problems so was rushed to Great Ormond Street Hospital where he spent the first couple of months of his life. He had surgery and was diagnosed with Fragile X Syndrome too. He is doing well now and has started to learn some words. Hayat has kindly shared some of her story.

“The start of my journey was filled with research and trying to get the boys moved from mainstream school to a special school, where I knew they would thrive and get the support they need.

Day to day life varies and depends on how the boys are feeling. We must help them with personal care on top of the usual parental responsibilities and there are many health and school letters and emails to respond to and appointments to attend. The boys like routine and don’t cope well with change so we have to prepare them if we’re going anywhere. I love seeing the boys happy and hearing them laugh.

I’m grateful for the help Carers in Hertfordshire has given me. I found out about the charity through the boys’ school. You helped me access funding (a Direct Payment) which we use for a Care Worker to look after the boys for five hours a week. They usually go to a farm and McDonald’s. During this time my husband and I can catch up on tasks such as shopping.

I’ve also been to some of your carers’ groups and information events. I don’t get out much other than for work, the school run, or for the occasional walk, but look forward to the Carers in Hertfordshire events I attend. I find it useful talking to, and hearing from, other carers, particularly other parent carers ahead of me in their caring journey as it helps me plan for the changes, of which there are many.

Your charity is so important and a lifeline to carers like me with the expert information and support you provide.”

Pat’s story

Pat supports two family members – her youngest son, who is 33 and has Asperger’s and learning difficulties, and her husband, who has had multiple strokes.

“Currently, my main caring role is supporting my husband, who has had four strokes since 2009 – the latest and worst in 2021. They have left him with limited mobility, difficulty following instructions, forgetfulness, and seizures.

My son experiences a lot of fatigue and sleeps a lot, but he helps me around the house with cleaning and other chores when able.

A typical day varies, but I look after the house, prepare lunch and dinner – my husband and son can make their own breakfast and drinks – and I ensure any medication has been taken. I also keep on top of appointments and paperwork. Caring is a journey, it can be a long road with many changes along the way.

I first contacted Carers in Hertfordshire in 2017 at my GP’s suggestion. I spoke to a Carer Support Advisor as I was keen to find out about any help available to me and my family. Following the conversation I secured a blue badge, which has been useful when going out with my husband.

Earlier this year (2024) I got back in touch as I wanted to plan for the future, particularly for if I couldn’t provide care. I didn’t know where to start so thought I’d turn to the experts at Carers in Hertfordshire.

An Advisor took time to listen to me and helped me make a plan. They referred me for a Carer’s Assessment and my husband for a review of his needs. Following this, my husband was awarded Attendance Allowance, which we are using towards a cleaner, which takes some of the pressure off of me.

I’ve also found out about support and organisations that could help in the future, such as key safes and care companies.

I’m grateful for the advice you have provided me. You help carers like me realise we are not alone, there’s a community ready to assist.”

James’ story

James and Charlotte have been caring for their daughter for 29 years, since she was born. She has severe learning difficulties and other health conditions and cannot go out alone as she needs someone with her to make sure she is safe. She has been living in supported accommodation for 10 years. Here James shares his story.

“My caring role has changed over the years. When my daughter lived in the family home, my wife and I took her to health appointments, arranged support for her, and did the things parents do such as preparing meals and providing emotional support. Since my daughter has been in supported accommodation the paid carers there arrange health appointments if she needs them. We provide emotional support and look after her affairs and interests.

The COVID-19 pandemic changed our situation too, we couldn’t have our daughter to stay with us one weekend a month like we did pre-pandemic, which was hard. However, she had her first weekend visit in five months at the start of June, which was great and hopefully we can continue these.

Some of the day services and charities like Carers in Hertfordshire and Watford Mencap have been beneficial to the family over the years. I found out about Carers in Hertfordshire about 10 years ago and started attending the meetings for people caring for someone with a learning disability. I have got a lot out of the meetings – information to help me in my caring role and hearing from other people in a similar situation. You can share information and experiences and support each other. Then in 2014, I became a Carer Representative on the Learning Disability Partnership Board. I was a ‘rep’ for three years. I found it good being able to contribute to discussions around services for people with learning disabilities and their carers with people from organisations that pay for or provide them. It was a chance to try and secure improvements and have carers’ voices heard, and represent the interests of people who cannot speak for themselves.

Then in 2018, I became a Carer Trainer, sharing my experiences with people working or studying in the health or social care sector, or interested in attending a care-based course at the University of Hertfordshire. I have enjoyed the role – it’s a flexible job for just a few days a year that I can do during my retirement. It is satisfying to use my previous work skills and share my experiences as a carer. I hope that this helps people use what they learn and apply it to their jobs, improving interaction and support for carers and people with care needs.

It’s useful having a charity like Carers in Hertfordshire there to turn to for information or support related to caring and to provide a platform for family and friend carers to have their voices heard by health and other services in Hertfordshire.”

Toby’s story

Toby, 54, cared for his Mum, who lived over 60 miles away, between 2017 and 2020. This long-distance caring role had a huge impact on his health and wellbeing. In September 2019, his caring role increased significantly, and he made numerous trips to hospitals, clinics and pharmacies local to his Mum, made many phone calls to care agencies, social services and district nurses, and regularly battled with services to ensure his Mum received good quality care.

Toby was unable to work for three years, took on many extra financial costs and become exhausted with the worry and anxiety. Toby said: “I could be on tenterhooks, waiting for the phone to ring or for the falls bracelet to alert me. I was unable to switch off.”

Toby describes one trip to hospital: “The admission in March 2020 was different. Her falls bracelet alerted me at 5.30am. On arrival at the family home, I was shocked to find her on the floor, in a lot of discomfort and somewhat frightened. In the hospital, it was distressing for her. The impact of COVID-19 was noticeable – restricted movement in the hospital, only I could go with her, and some A&E staff were putting on full protective clothing right in front of us. It made COVID-19 very real.”

Following a further fall the next morning, Toby made the extremely tough decision to move his Mum to a care home with invaluable support from the family social worker. As this took place during lockdown, the transition was a very different experience. He was only able to see and chat to her through a window and unable to give her what she needed most – a hug. The initial few weeks were difficult for both Toby and his mum, coming to terms with such a big change, but his Mum began to enjoy living in the care home. Toby initially felt bereft and exhausted after the care home took on the majority of his caring role but slowly Toby began to rediscover life again without those heavy responsibilities.

Toby was able to call his Mum in the home regularly, he even spoke to her the day before she died. The care home called to say his Mum had died peacefully in her sleep. This was shortly before Toby’s wedding and Toby had to break the news to his brother, who was overseas.

There followed lots of practicalities – liaising with the mortuary, registrars, funeral directors. Toby said: “It is always good to have a support network during these times, be that Carers in Hertfordshire, friends, church or a club – people you can trust. I’ve always felt fully supported and not like I’m dealing with this on my own. It will take time coming to terms with my mum’s passing and I think I will need that support for a while.”

Throughout his caring role, Toby received support from Carers in Hertfordshire – for example through our Caring with Confidence course, something which he recalled and drew on whilst making tough decisions about his mum’s care. Toby summarises: “Caring for someone, no matter how much one loves that person and wishes to help that person, is a challenging and difficult process, with plenty of ups and downs. It is good, even vital, to have an escape, to have something that is just for oneself. Something that provides an oasis in amongst the ‘desert’ of caring.”

For Toby, joining our Carers‘ Camera Club gave him his ‘oasis’ and an opportunity to put himself first from time to time. You can find out about our Carers‘ Camera Club here – Carers‘ Camera Club.