Are you a carer? Before you say no, consider this: many people quietly assume the role of caregivers, offering support to friends or family members navigating mental health challenges. However, these caregivers are often unaware that they hold this crucial role and see themselves as simply fulfilling the natural responsibilities of being a friend, husband, wife, child or sibling.
This lack of recognition can have profound implications as it prevents caregivers from accessing the vital support systems offered by Somerset Carers, a project led by Open Mental Health partner Community Council for Somerset. The project assists people over 18 looking after someone struggling with their mental health in an unpaid caring capacity.
We spoke with Katherine West, Open Mental Health’s CCS Carers Project Lead, and Johanna Pereira, an experienced carer.
Katherine says, “It’s underestimated how many unpaid carers there are in this country because of this issue. People are not registering as carers with their GP, so the number is grossly underrepresented.”
Johanna thinks the question ‘Are you a carer?’ is problematic: “Perhaps we can say, do you care for somebody? Is there somebody in your life you provide care or support for? I think those are better words. And then, of course, explain to that person, ‘Oh my gosh, you are a carer.’”
Somerset’s Invisible Caregivers
The term caregiver often brings images of formal roles with clear distinctions to mind. However, in the field of mental health, many caregivers don’t realise they’ve taken on this role. Acts of kindness, support, and understanding—integral components of caregiving—are woven seamlessly into the fabric of relationships. Friends and family members may not identify as caregivers, seeing their actions as part of their pre-existing bonds. This lack of recognition stems from misconceptions of caregiving as a formal, professional, structured responsibility, overlooking the countless unpaid caregivers silently shouldering the weight of mental health challenges.
Johanna says, “The experience of becoming a carer has quite an impact, whether you acknowledge it or not. Before becoming a parent-carer, I cared for my late husband. I nursed him at home. He was terminally ill, and one of the things that I remember very clearly is how difficult it is to consider yourself a carer. I still saw myself as his wife. That’s all I was. That was my priority above everything else. I found it difficult to accept the situation because it was a loss. Seeing myself as a carer meant that I was that before I was his wife, and I’d have to start thinking about being a young widow, you know? There were a lot of losses to deal with.”
Johanna reflects that the transition to a caregiving role can be highly challenging. People might feel that they’re losing their former identity and envisioned future. Their idea of themselves and their expectation of what life will be like is replaced with unknown and uncertain prospects. In response, unconsciously, people can be in denial and say, ‘No, I’m not a carer’ because they want to cling to their former way of life and thinking.
Katherine adds, “If you don’t identify yourself as a carer, you won’t access the support you need. Because there’s already a barrier before you even start. A medical professional might say, ‘Are you a carer?’ and you say, ‘No.’”
Katherine who has lived experience as a mental health carer says that many carers don’t recognise their role because they aren’t providing care in a physical sense.
“But believe me, they are caring for that person, sometimes 24 hours a day. Because if they have a relapse, or if they’re in crisis, then they are with that person all the time. They’re very involved and emotionally investing everything they’ve got in supporting that person.”
The Struggles of Unseen Caregiving
Caring for someone with a mental health problem poses unique challenges, often exacerbated by the informal nature of the caregiving role. The absence of formal acknowledgement may result in unmet emotional and practical needs for caregivers. Their invisible burden can lead to isolation, exhaustion, and a sense of uncharted responsibility. The unwarranted stigma sometimes associated with mental health issues further contributes to the silence surrounding caregiving, as individuals may hesitate to seek support due to fear of misconceptions.
Johanna says, “There’s this idea that caring is an obligation, and because it has this stigma attached to it, especially in mental health, you try to hide that you’re looking after somebody who has mental health problems or illness.”
Katherine noted some of the challenges of being a mental health caregiver: “Caregivers sometimes need to be prepared to step in if things take a turn. When things aren’t as good, their loved ones are struggling, they must be available to them and step in. It can be incredibly frustrating when they won’t take their medication, and they can see it’s going to go only one way. They might know where it’s going, and sometimes can’t do anything about it because it’s all about consent. It can be a frightening time.”
Johanna agrees, reflecting on the challenges of being a parent-carer to a child on the autistic spectrum.
“It’s going out and not knowing how she will react or if she will have a meltdown. You have to be prepared and on constant alert. And if she does, you know how everybody else will react to you negatively. It’s very difficult. The unpredictability is so challenging.”
More Tea, Less Sympathy
We asked Johanna about the reactions of family and friends when someone finds themselves in a caregiving role—what’s helpful?
Johanna said, “We all want compassion, but not pity. I don’t want to feel as if my life is over. I want people to say, ‘It’s OK. Look, life brings us lots of challenges. This is one of them. We’re here to support you. We’ll be here by your side. Whatever you need. If we can help you with anything, however small, even if it’s just to cook you a casserole.’
“But I think the most difficult reaction is when people don’t know what to say and avoid you. That disconnection is so difficult. It’s like they’re thinking: ‘Oh, you’re on your own with this one. I can’t deal with this. I don’t know how to help you.’
“And people don’t do this on purpose. They don’t do this even consciously. But I felt so isolated, you know.”
Breaking the Silence
Recognising and addressing caregivers’ challenges is essential for fostering a supportive environment. Acknowledging their role empowers caregivers to access Somerset-wide resources and networks designed to provide guidance and relief. OMH initiatives, like walkabouts and the OMH Roadshow, aim to destigmatise mental health conversations and contribute to a culture where caregivers feel seen, heard, and understood. Education and awareness campaigns play an important role in helping individuals identify themselves as caregivers, shedding light on the invaluable contributions they make to the wellbeing of their loved ones.
As the mother of a child on the autistic spectrum, Johanna experiences situations where the parents of neurotypical children are afraid of saying the wrong thing and so avoid conversation. However, that can lead a parent-carer to feel frozen out.
“I’ve had a neurotypical child as well,” Johanna says. “So, I can imagine how a neurotypical parent is thinking: ‘I just don’t know how to relate to Johanna and her child. So, I won’t do anything. I won’t even talk to her.’—But that’s so isolating. I found that the questions just stopped. People didn’t ask, ‘How is your son?’ Even when talking with wider family, other relatives were talked about, but not my son. It’s almost as if people don’t know what to say. Perhaps they don’t understand what’s going on, so they’d rather not talk about it.”
We asked Johanna what a more helpful response would be:
“I would like people to call me and say, ‘How are you.’ And make space for me and say, ‘Look, I know you’re busy, but if you ever have a moment, we will have a chair at our dinner table for you.’ Because I won’t be able to be there all the time, but I want to know that if I could, if there was a moment that my child perhaps was on a school trip or something, that my friends were still there, that my family was still there. And also, I think generally, I would like family to embrace change with you. That’s what families are about. They don’t have to become the carer for me, but they have to embrace change.”
Katherine says older members of a family may come from a generation where mental health wasn’t talked about. “And that’s part of the reason why people don’t understand it, why there’s still a stigma, and why people still don’t know how to approach the subject. I’ve had carers say to me that family members have said to them ‘When are they going to get better?’ A bit like it’s a broken arm. But when someone’s in mental health recovery, it’s about change and adapting to a new life.”
Calls for Carers
As part of the carers project, Calls for Carers addresses the sense of isolation many carers feel and gives practical advice and a listening ear. This OMH-funded initiative provides a weekly supportive phone call.
“People do feel isolated,” Katherine says. “Not only physically, but mentally too, because they believe there’s no one else in their situation or no one understands their challenges. So, if somebody with lived experience of being a carer can call them, that shared experience makes a lot of difference, and they can start to think, ‘Oh, actually, I’m not the only one in this situation.’ It’s the empathy and guidance a caller can give that helps. A caregiver may be unable to get out to a support group because they are caring for somebody in the home. So, a call, once a week or whenever it is suitable, makes a meaningful impact.”
Johanna reflects that a weekly call would have been of great benefit when she first became a parent-carer. “In the early days, it would have been huge because my husband had just died two or three months before my little girl was diagnosed. So, I was dealing with grief and this complete life change: my little girl being diagnosed as autistic and with developmental delay. She’s nine but has a cognitive age of a 2-year-old.
“I felt alone because I didn’t know other humans were experiencing what I was experiencing with their children. That other parents out there had an autistic child. Of course, you know theoretically but not emotionally.
“Just to be told, ‘I also have a disabled child’ or ‘This is what happens when you have an autistic child’ would have been huge. Being able to say, ‘I feel scared’—there isn’t a manual you can read about how to raise an autistic child.”
Katherine adds, “Part of a call can be to connect caregivers to courses if they want to know about a certain condition or put them in touch with peer support groups. We aim to find out what each person needs and then tailor support to them. So, it’s not necessarily just about emotional support. It’s also about moving forward and seeing what practical help is available.”
The Strengths of Being a Caregiver
Despite the challenges of a caregiving role, Johanna says the experience has made her aware of her strengths.
“I always thought I was the type of person to run to the hills, disappear and pretend nothing was happening. But I took it on. I just got on with it. And only when I look back do I think, ‘Wow, I did that.’ I found I had the courage and strength to do it.
“And with my little girl, eventually, when I realised, ‘Oh my gosh, my baby is going to need me forever,’ I found so much tenderness. I was always compassionate, but I think it brought an extra tenderness out of me that I didn’t realise I had.
“I’ve become more aware of vulnerability, and I’m determined and passionate to be an advocate for those who are vulnerable because I believe that they have a place in this world. And that’s because of my little girl. She brought things out of me: strength and courage that I didn’t realise I had.”
Unravelling the narrative of caregiving in the context of mental health involves acknowledging the silent heroes who navigate the complexities of this role without formal recognition. As we come to understand the challenges caregivers face, we pave the way for a more supportive and inclusive environment, ensuring that no caregiver remains unseen or unheard in their journey of compassionate support.
If you or someone you know is on that journey, you can access the support you deserve by calling the Somerset Carers FREEPHONE advice line on 0800 31 68 600 or by emailing carers@somersetrcc.org.uk.
And, if you have lived experience of caregiving and would like to volunteer for Calls to Carers, please follow this link or contact katherineomh@somersetrcc.org.uk