People spoke about what it was like to care for someone who was experiencing severe mental health problems: how the work of caring for someone was sometimes hard and unending, but also how hard it could be seeing someone they cared for in distress (see also ‘Suicide and self harm’).
Whilst some people had only cared for their family member in times of crisis, others constantly cared for someone who was vulnerable or distressed and being a carer meant different things to different people.
Sheila’s whole life was tied into what her husband wanted to do. Every day was unpredictable as her husband’s health varied. She just wanted him to enjoy a normal life.
Sheila’s whole life was tied into what her husband wanted to do. Every day was unpredictable as her husband’s health varied. She just wanted him to enjoy a normal life.
Age at interview: 64
Sex: Female
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So yes it’s, my life every day, I don’t know what’s going to happen. It depends on how he’s feeling, if he’s going to come out, if I’m going to take him somewhere or he just wants to come home, because I never know from day to day. I’ve spoken to him this morning. He might come out this afternoon for a little while he says. But I won’t know until I get a call from him, “Oh I’m going to stay here today I can’t come out.” Or, “Will you pick me up for a couple of hours.” You know, so it has affected my life completely. I feel that he’s still controlling my life really, which isn’t you know, I don’t know, if I should feel like that, but then I think well, as he’s been told well you’re lucky that you’ve got the support that you have. And I said to him if I was going to leave him I’d have left him years ago [laughs]. Not, not now, you know, because I’m in it with him as well and I want him to get better, so that we can just enjoy a normal life even if we never go big holidays or anything. I’m not bothered about that. It’s just even taking him up the zoo or doing ordinary things that people do as families.
Steve said he didn’t really consider himself a carer, more a husband.
Steve said he didn’t really consider himself a carer, more a husband.
Age at interview: 60
Sex: Male
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You described yourself now as a carer?
Hm.
Would you the first time when you were getting advice of your wife’s parents, and your wife’s first admission, have described yourself as a carer then?
No. And it’s only recently I’ve been, I’m calling myself a carer, because my wife’s psychiatrist and the local MIND group have referred to me as a carer. I never really considered myself to be a carer. She’s my wife, my partner, and that’s just part of, that’s just the way life is, you know, and I know it’s a corny thing wedding vows, but sickness and health, I mean it could have been me. And you know, it’s just the way it is and she’s the one now and again with the illness and when she has the illness then I try and you know, do what I can to not so much look after her, but just juggle the other things that have to be done when she’s not here. So I don’t really see myself as a carer and it’s only recently that I’ve started using that term I suppose.
Alka managed her husband’s moods through imposing routines and noticed when he started to become unwell. She said that the dynamic of her and her husband’s relationship had changed completely because of his illness.
Alka managed her husband’s moods through imposing routines and noticed when he started to become unwell. She said that the dynamic of her and her husband’s relationship had changed completely because of his illness.
Age at interview: 50
Sex: Female
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So yes the dynamic of the relationship has changed. In terms of managing it I think that we have contact with the doctors when he’s not very well and obviously we manage the illness but in terms of day to day life that’s down to me. I’m, ensure, I think, and this is a way that I found, found that it works for us is that it’s a very regimented lifestyle, so regular bedtimes, regular activities and if we do have contact with people I try and kind of get [husband’s name] to withdraw before everything gets, he, he can get very excitable because he’s quite a gregarious person anyway but it’s knowing where to draw the line I think, if I were to leave him to it the chances are, you know, he’d kind of go over the top in terms of similar behaviour to that which, which happened, you know, during one of his hyper-manic kind of episodes.
Some people, like David Y and Tristan, had to care for a new born or very young child, on top of caring for someone who was unwell. Having a loved one in hospital could take some of the strain off. But visiting could also add to the strain, especially if the hospital was far away. When Steve’s wife had postnatal depression and was in hospital, he had to juggle looking after two small children, work and finding time to visit his wife in hospital.
People often spoke about the effect of caring on their own emotional and physical well-being, as well as their financial situation. For example David Y had to give up work and had no income. People said that although they wanted to do it, caring for someone could be difficult and upsetting in practice.
People who suffered with mental illness also recognised the pressure their illness put on their families. Jenny’s husband had health problems, and she worried that the stress of dealing with her mental health had hurt him. Jane worried about the emotional difficulties her children might experience due to her mental health difficulties.
Annie and Lorraine had days when they couldn’t face dealing with their mum’s depression and could get angry with her.
Annie and Lorraine had days when they couldn’t face dealing with their mum’s depression and could get angry with her.
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Lorraine: But sometimes you think, “Do you know what? Today I just don’t want this” you know.
Annie: Yes.
Lorraine: “Can you just keep it to yourself because I’m –
Annie: Yes.
Lorraine: -- I’m not bothered today. Leave me alone.” And it is horrible but that is part of it. You know, it’s like with mum we’ve come down and we do things with mum. But we have lost our temper, you know. And, you know, mum will, some-, when she was so bad like she was just so dormant, you know, everything you had to tell her to, “Do you want a cup of tea?” “Yes, go on then.” But you’d have to make it and then she’d, you know, “Well, drink it then” you know. “There’s your tea. You said you wanted one.” “What do you want for dinner?” “I don’t want anything.” But then you’d put a dinner in front of her and she’d eat it all. And it, the anger sometimes, I used to get really –
Annie: Really yes.
Lorraine: - I get really angry sometimes, you know, and –
Annie: We all do.
Nevertheless, carers do find ways of coping. Tristan struggled to remember the details of what his wife was like when she was delusional and says “I think I’ve probably blocked it out”.
Some talked about the help they got from other family members, although others talked about difficult family relations adding stress. At the beginning of their relationship, Steve knew very little about mental health and depended on his wife’s parents to guide him as to what to do. However, Alka found it hard when her husband’s family didn’t understand her way of managing her husband’s illness. Alka felt early on that her husband needed routine, although his family said she was trying to keep them away from him.
Steve says his grown-up children have been a big help and his son wants to study clinical psychology. They grew up with their mother’s depression but are understanding.
Steve says his grown-up children have been a big help and his son wants to study clinical psychology. They grew up with their mother’s depression but are understanding.
Age at interview: 60
Sex: Male
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As I said her parents were much more actively involved, we didn’t have children and now it’s kind of swinging back towards that because our children are now almost grown up. One’s at university, one’s just left. And they’re both very helpful and they appreciate what she’s going through and how to deal with it, because effectively they have grown up with their mother suffering from depression over the years, and for her going into hospital, for her having ECT. They’ve been aware of that and they’ve become used to it. They’re not, not panicked by it any more, it’s just the way that things are, you know, their mother has an illness and they’ve become used to it, so they’re physically not in the house as much as they used to be, and when they are they can be quite helpful, so that has been beneficial to me as a carer, that I’m not the main carer any more. In fact my eldest son is wanting to study clinical psychology so he has a sympathy and a bit of a knowledge about that area as well, so he’s been quite a, well a great help to me over the last couple of years.
A few people mentioned some positive aspects to being a carer, such as the friends they’d made and the support they’d received from friends and family and from organisations. Beattie met her husband through a mental health support group. He has had schizophrenia and they look after each other. Sheila said she had made a lot of friends as a result of supporting her husband through his mental illness.
Last reviewed January 2018.
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