The Realities of Caring for Someone with Severe Mental Health Challenges – Kaz’s story

12th May 2025

As part of Mental Health Week, we are shining a light on the often-unseen dedication of those who care for loved ones living with complex mental health conditions.  

In this interview, we speak to Kaz who has supported her partner through many years of mental illness. Through her honest experiences, she highlights the challenges of navigating the mental health system, the emotional toll of caring, and the unexpected moments of beauty and resilience that keep her going. 

Can you tell us a little bit about how you became a carer? 

Well, we’ve been friends for a long time. We’d supported each other through bereavements and health issues, and over time, I found myself helping with hospital appointments, making sure they had food, and looking after them when they came home. One day someone said to me, “You do realise you’re a carer, don’t you?” And I said, “Well, I’m just helping out.” But they said, “That’s what a carer does.” It took a while to fully understand that. 

Could you tell us a bit more about your partner’s condition—what an episode looks like, how often it happens, and how long it lasts? 

It’s a lifelong condition that started when they were 17. Episodes vary—it could be every 12 months, or it could be three or four years in between. But when one does happen, it can last three to six months, gradually getting worse. You start seeing signs—neglecting basic care, not eating or sleeping properly, withdrawing socially. And then it can develop to trashing the house, smashing things, inviting anyone round to party, and being very unpleasant toward those closest to them—really unpleasant. All hard things to put the brakes on if the person is a male and in their own home.  

That may be followed by hospitalisation, sometimes lasting up to two years, and then another one to two years of recovery. It really depends on the severity of the episode and the treatment used—whether it’s ECT, medication, or isolation. 

I think it’s important for people to understand that. Because some might say, “Well, that’s fine, they’re in hospital” But that’s two years of you trying to keep the connection going—visiting, bringing things, encouraging them. And at the start, you might not even recognise them anymore. You have to rebuild everything, again and again. That takes a lot of emotional energy. 

But I feel fortunate to have known them before their first episode. Remembering who they were before things got difficult helps during the darker times. It keeps me grounded and reminds me of who they are underneath everything.  

What were some of the biggest adjustments you had to make when you took on that role? 

It’s hard to answer because for a long time, you don’t see it as a “role.” At first, it’s just helping someone you care about. But then it starts to affect your life—you’re struggling to do your job because you’re constantly worried, organising care, making phone calls, or chasing services. That’s when you realise it’s more than just helping out. It’s gradually realising that you’ve taken on a responsibility that affects everything else.  

But for me, it’s very up and down. Sometimes I’m doing 24/7 care for a couple of weeks straight, and then it calms down again. It’s not constant every day like it is for some carers, but that makes it harder to describe. I might say, “Things are calm right now,” but that doesn’t mean I’m not a carer. I’m still there in the background, ready to step in when needed. 

What do you wish more people understood about caring for someone with severe mental health issues? 

That supporting the carer makes a big difference to the person being cared for. If I’m supported, I can cope better, stay calmer, and be more present. And that has a direct impact on them - they pick up on my distress. If I’m frazzled, it unsettles everything. 

Also, most carers can’t work full-time. It’s just not realistic. The emotional and mental toll is different from physical care, but just as draining. There needs to be more flexibility and more understanding of what this kind of care involves. 

Have you found any support networks or communities that helped? 

It’s been difficult. I tried some local groups, but because the situation I’m dealing with is so severe, it’s been hard to relate. I do have absolute sympathy for others in different caring situations, but I struggled to find people who understood the extremes. 

Eventually, I connected with two women online through a Bipolar UK forum. That was a turning point. We instantly got each other. One of them had a horrifying day—she thought everything was fine with the person she cared for but got a call at work to say they were under a train. She was left dealing with that and the aftermath. It’s not something most people can relate to, and it was such a relief to find people who could. 

Do you feel supported by services and professionals? 

Sometimes. We’ve had some brilliant people over the years—really dedicated—but they rarely stay. They’re moved on, reassigned, or leave. So, every time, we have to rebuild that trust and understanding from scratch. That’s one of the hardest parts—constantly starting over. 

But I do appreciate when things do work. When the system works, when you get good, committed people involved, it can really make a difference. I’m not trying to knock the whole system. 

But right now, the support is being stretched too thin. They’ll say, “We’ll only engage when the person is in hospital,” and ignore what happens in between. But what happens between is what leads to a crisis. 

It’s like saying, “We won’t intervene unless something kicks off,” when I’m sitting there spotting every early warning sign. Most people don’t see it until the final days before a breakdown. I’ll say, “That’s been happening for weeks—how did no one notice?” 

“Three months of intensive support to avoid admission is surely better than six to twelve months in a psychiatric unit.” 

And when it’s bad, and there are no local beds, we’ve been sent to London. That’s very hard. They’re unwell, they don’t understand where they are, and you’re doing 6 hours of travel for an hour’s visit. 

Thankfully, it’s improved slightly. A few years ago, they’d get left in a police cell, sometimes for days, before someone came to move them. Now, there’s a crisis suite at Southmead, which is helpful. But it's still new and bed spaces are reducing, so it’s getting harder. 

And what made you decide to become a Carers Rep? 

Part of it is anger—anger at what's happening to services. And part of it is wanting more representation for carers supporting people with severe conditions. I feel like only a small number of people deal with the more severe end, and it's incredibly tough. I might not be the best person to speak up, but someone has to say, “Hey, there’s a whole group out here who need support too.” 

If you could give advice to someone who's just starting their caring journey, what would that be? 

I definitely would have benefited from having contact with a peer—someone who's been doing it longer than I have. Someone who could have said, “You need to reinforce your own boundaries. You need to look after yourself.” You hear those things, but you don’t really take them on board until someone says, “You’re going to get yourself in a real pickle. It’s going to wear you down. You won’t be able to help them or sustain this.” 

Because it is cyclical. It’s not one big traumatic event—it’s something that happens again and again, and it wears you out. You just don’t have the strength to deal with it repeatedly unless you learn to care for yourself and know when to seek help. 

Sometimes, though, help isn’t there. You’re just left with yourself and maybe someone on the end of the phone or the Internet. That’s often the reality. I can be calling and calling services for support, but their focus is on the person who’s unwell. Getting help for me, even when things are really serious, is very hard. 

That’s why peer support is so important. Someone who just gets it—someone you don’t have to explain everything to. You can call and say, “There’s a crisis coming,” and they’ll say, “Yeah, we saw this coming from what you've been saying.” They know what you mean without needing the backstory. 

This year’s Mental Health Awareness Week theme is “community.” What role does community play in supporting you and the person you care for? 

When people in the community have a bit of understanding, it makes a huge difference. But it’s hard. Joining a club or group is difficult when you might disappear for six months due to a crisis. And when you come back, people ask where you’ve been, or why you seem different. It’s hard to explain that someone’s just come through a traumatic episode—that their focus is off, they can’t drive, and they’re not themselves yet. 

We take it for granted that we can just “join in” with things. But if you miss half the football matches or club nights, people start wondering why. And if the person you care for had a public episode, it’s even harder. How do you explain that wasn’t them—it was their illness? 
It takes a lot of energy to go through that over and over, to try to explain or rebuild. But when you find people who do get it, it makes such a difference. 

Yeah, there's a lot of negativity in that cycle. A lot of starting over. A lot of rebuilding. But I do want to say—there are also beautiful moments that come from my partner's condition. 

There was a recent episode, and it's been so lovely seeing them come back. You see it starting to click again—they go for a coffee, they’re not paranoid, not exhausted, just sitting there like anyone else. And you think, “They’re back.” 

It’s wonderful. We don’t always appreciate those little moments when people are doing okay. But when you’ve seen someone at their worst, you treasure those days. And that's when you really appreciate what the staff have done and how many people it takes to put someone back together. 
It’s wonderful to see, it’s not nice when it happens and it would be nice if it didn’t have to happen but they say themselves they wouldn’t want to take away their illness because it has given them that appreciation for things other people take for granted and they’re very grateful for the life that they do have. 

This conversation offers a rare and honest glimpse into the realities of caring for someone with a severe mental illness. It speaks not only to the difficulties - of isolation, burnout, and navigating overstretched systems—but also to the deep humanity and strength that carers bring to their role every day. 

As we mark Mental Health Awareness Week, we are reminded that carers need care too. They deserve understanding, recognition, and meaningful support from both services and their communities. Because when carers are supported, those they care for are better supported too.