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 call the office on 01992 58 69 69 or email
James and Charlotte have been caring for their daughter for 28 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 enjoy 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, 53, 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 on the 22nd 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 e.t.c. – people you can trust. I’ve always felt fully supported and not like I’m dealing with this on my own. It will be a fairly long process to come 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. (Pictured right is one of Toby's pictures).
You can find out about our Carers' Camera Club here - Carers' Camera Club.
Clare, from Rickmansworth, has been a carer for about 10 years and registered with Carers in Hertfordshire in 2017. She supports her Mum who has restricted mobility, speech and communication. Her Mum lives in her own house and is supported by a live-in carer. Clare usually looks after her Mum at weekends, if extra support is needed, or if the paid carer is unwell or on holiday. Here Clare shares her experience of being an unpaid carer in 2020 during COVID-19 and of Carers in Hertfordshire.
“Lockdown has given me some respite from my caring role. As my Mum is vulnerable and has been shielding, she and her live-in carer haven’t left the house. I visit at least once a week to deliver shopping, medication and other supplies, at a safe distance. I also talk to Mum every day, including video calls. I’m ready to jump in if needed. I’m also planning to look after Mum when the lockdown is lifted or eased as the paid carer will need a break.
I’ve found the coronavirus situation and support and information I have accessed thanks to Carers in Hertfordshire has meant I can be more of a daughter again, rather than just a carer. During this time, being able to contact the Carer Support Advisors at Carers in Hertfordshire has been so useful and helped put my mind at rest. I’ve found out about personal protective equipment and testing for the virus. It’s also been good to know that the Carers’ Passport Discount ID Card could be used at some supermarkets to access priority shopping times, although I haven’t had to do this yet.
Previously, you helped me find out about the flexible appointments GP practices usually offer unpaid carers and connected me to Healthwatch Hertfordshire."
Whilst Clare hasn’t been caring for her Mum as frequently, she has continued her work as a mentor to university students over the phone and online. She has used her background developing and delivering training with us as a Carer Trainer over the last three years. Clare said: “I thoroughly enjoy the Carer Trainer role. It has allowed me to use my training skills and share my experiences as a carer such as navigating and accessing services and communication, with nursing and social care students or staff from health and care sector organisations. I’ve also been able to network, and I usually learn something to use in my caring role or pass onto others.
Clare has also appreciated the free courses and workshops we run. She said: “The first one I attended was an end of life course at a hospice. It gave me the confidence to have a Carer’s Assessment. It also opened me up to the support hospices offered and I approached the hospice near Mum, which is now helping us. Through the courses I have made friends and the Mind, Body and Soul course made me start writing poetry again.”
When asked for a piece of advice she would share with other carers Clare said: “If you’re having a bad day sing to yourself or take 10 minutes to relax. Also, just take things 10 minutes at a time and don’t think about the future or worry about situations you cannot control or questions you don’t have the answers to.”
Finally, Clare, who offers Carers’ Passport holders 20% off her mentoring support through her business Positive Experience Training, said: “For me Carers in Hertfordshire was my wake up call, I was in danger of becoming ill, but with the support and advice you provided you helped me rethink things. The charity is unique and means so much to family and friend carers like me as you put us first and allow us to think about and prioritise our health and wellbeing.”
Below is a poem Clare wrote about the COVID-19 situation.
Isolated, lonely feeling out on a limb
A lifeline of support to get me back in the swim
Bespoke courses and carer training peers keep my resilience strong
A win-win combination for when the days are just too long!