Carer Conversations: Carers' Stories
Loneliness can affect anyone, but carers are particularly at risk. According to research by the national carers’ charity Carers UK, eight in ten unpaid carers have felt lonely or isolated because of their caring role.
At the Carers Support Centre, we believe that no one should have to care alone. Read how we've helped carers feel more connected with their community.
Matthew*: 'It's truly been a lifeline.'
Matthew* cares for his elderly mother in her late nineties. He lives very close by and visits his mother almost every day for several hours. He is the primary carer, as other relatives live further away and are less able to help. Even when Matthew is not visiting his mother, he always ‘on call’. Matthew sums up his role as ‘running another property and keeping a 96-year-old safe.’
Matthew experienced chronic loneliness and isolation in the past, which affected his mental health. His isolation contributed to severe depression and he was taking medication for a while. ‘It’s like being in a big dark hole. You can see the light but you can’t climb a ladder to get out.’
It was during this time that Matthew first discovered the Carers Information Service. ‘It’s brilliant. I can drop in to the Café whenever. You meet so many new people… It’s amazing for self-esteem, I’ve made so many friends and contacts, plus the wonderful help and advice the Centre can give.’
'It’s a welcoming place, you feel so safe.'
Matthew particularly appreciates the atmosphere of the Carers Support Centre. ‘It’s a welcoming place, you feel so safe. You know you will be treated with compassion, that you won’t be criticised, that you will be accepted for who you are.’ He enjoys meeting other carers in the Carers Café. ‘Everyone acknowledges and respects that you’re a carer. People understand each other - there’s a common bond. People come in and say, oh I remember you! It’s nice to be remembered by somebody.’
Matthew is now very conscious of the importance of looking after his own needs as well as keeping his mother safe and well. ‘You have to make time for yourself and your wellbeing. If you let [your caring role] dominate you, it’s a slippery slope to being socially isolated.’
Despite the gains he has made personally, Matthew is concerned about those who are missing out. ‘There are still a lot of people who don’t know [what support is out there]. Many people don’t recognise that they are carers. It’s a big problem. The first step is recognising you are a carer.’
When asked where he would be without the Carers Support Centre, Matthew says, ‘I would be in a very dark place. It’s truly been a lifeline.’
Name changed to protect privacy.
Isabella*: ‘Even though you’re going through hell, it’s made a difference.’
Isabella* is a full-time carer for her sister with a learning disability and a mental health problem. Her sister’s needs can be very complex and she require intensive care. Isabella supports her sister with daily tasks such as eating, washing, bathing and dressing; speaks up on her behalf with doctors and social workers, provides emotional support and makes sure she stays safe and well. ‘I micromanage her life.’
Isabella transitioned to being her sister’s part-time carer to her full-time carer last year. However, in order to provide the level of care her sister needs, Isabella decided to quit work. ‘It wasn’t an easy choice. But I didn’t want her to go into a care home.’
The biggest issue for Isabella is a lack of respite. The service her sister previously used was cut, and has not been replaced as she’d hoped. She recently had to cancel a planned holiday due to an inability to find replacement care. ‘I just want to go to a few social events a year.’ The difficulties are still ongoing, but Isabella tries to remain hopeful. She has recently gained some limited respite support, and she intends to make the most of the little bit of ‘me time’ she gets.
Since coming to the Carers Support Centre, Isabella has felt the change. ‘This place has been a godsend.’ The drop-in advice helped ‘point her in the right direction’ and made her aware of services she hadn’t considered. She’s attended several workshops, finding them helpful and informative, and visits the Carers Café when she can.
Isabella recognises the benefits of meeting other carers at the Centre. ‘Everyone is understanding and sympathetic. We’re supporting one another.’ Isabella is an unofficial ambassador for the Centre, always suggesting that other carers visit when they need help. ‘A neighbour mentioned she’d got help at the Carers Support Centre and I felt quite chuffed.’
Isabella describes the Carers Support Centre as ‘crucial’ for carers. ‘Even though you’re going through hell, it’s made a difference.’
Name changed to protect privacy.
Hannah*: ‘You can feel lonely in a room with 20 people. They haven’t got a clue what your life is like.’
Hannah* cares for her young adult son with a learning disability and multiple health conditions. Hannah describes her caring role as ‘full on’, as he is ‘not independent.’ She supports and prompts him with daily activities such as bathing, dressing, taking his medication and preparing and cooking meals, as he would be unable to do these things by himself. He attends college but cannot travel alone, so she needs to take him to and pick him up.
Hannah describes her son as ‘a joy’; ‘I wouldn’t change him.’ Yet his needs mean her caring role will not come to an end now he has reached adulthood: ‘It’s relentless.’ As well as supporting her son, Hannah also cares for her husband, who has a health condition, and her elderly mother, whose care is shared with other family members. She visits her mother two to three times a week to make sure she is safe and well.
Due to her caring role, Hannah is unable to go out in the evenings. ‘I can’t remember the last time I went out with my husband.’ She says she feels OK about this, but it does make it harder to stay in touch with friends and she sometimes feels like she is missing out. ‘I feel quite sad about it sometimes. The world’s going on around me and I’m not able to tap into it.’ But even when she’s with other people, Hannah sometimes feels lonely: ‘You can feel lonely in a room with 20 people. They haven’t got a clue what your life is like.’
'I wish you were here 15 years ago...'
Hannah first came to the Carers Support Centre three years ago. ‘I wish you were here 15 years ago,’ she says. ‘I received support I’d never received before, mentally and physically… nothing is too much trouble.’ Whilst she still sometimes experiences loneliness during the evenings, she finds the Centre has helped her. ‘It gives me confidence that if something happens, you can go and ask someone... [they’re] here to listen.’ Hannah enjoys health and wellbeing activities at the Centre but says that even just being able to come in and have a cup of tea makes a difference. ‘It’s a bit of a lifeline.’
Name changed to protect privacy.