After Covid, the main people since my husband’s left, in my life are carers, and they’re paid obviously through social care, direct payments, to come and help support me, and that makes me feel lonely that I have to, even though I need that support to get dressed and things like that, it makes me feel lonely that I have to pay people to be in my lives, in my life.

I: So, so tell me about the carers.

R: The carers come in at around half eight, nine o’clock on a morning,
They help with getting me showered, get, help me get with getting dressed because of my pelvis, my lower body’s, doesn’t work very well. They’ll tidy up the teatime things, and they’ll, and then at lunch time they come in again and help with making lunch, and making tea, cos I can’t lift heavy things through my pelvis. But they also provide a really valuable resource in that it’s somebody to talk to, because I don’t have my husband and my daughter to talk to and they’re invaluable in that. Often, like today and yesterday, and Monday, and Sunday, and Saturday they were the only people I saw.

I: Tell me about the care workers that come into the house,  have you talked to them about loneliness? And support workers.

Yes I have talked to them that I feel lonely, and they’re been really understanding, really receptive about what can be done, you know can they think of, they’ve encouraged me to like to go out with them. Which I haven’t, I do go out with one of them, I go, weekly shopping, and cos Covid all got shut down again I haven’t gone out with the care workers, but they recognise that I really struggle to get out [um] because of my physical and mental illness. But the care workers, they’re really kind, they, they care we have a laugh, they’re an important part of my life, a valuable part.

I: You talked about your support worker

Yeah

And [um] their help in finding groups

Yes.

I: Could you talk to me a little bit about that?

Well I’ve worked with [name] her name is, she’s, she’s been a Godsend really in the fact of being such a help, no pressure put on me because I’m not good with pressure.

I: And she understands that?

Yes she does very much so and she’s just worked with me patiently now for like, I think it’s seven or eight years now. She could see how I was from the start that I wasn’t going to be pushed into anything, I’m not good at being pushed into things that I’m not comfortable with because of feeling I’m gonna fail because if I can’t do something it makes me feel like I’m a failure. And so she picked up on that from the start and I think she slowly sort of integrated me into thinking about meeting some people at, it’s like a community, you know, like a group to just sit and talk to people, you have your lunch there, a cup of coffee or tea or whatever and play cards or dominoes or something, it’s just one of those sort of groups for people with mental health issues. I mean she, she ran it with another lady when I was there but she had to move on but she still works within [name] but she just went straight with just doing the outreach work instead of the group as well as outreach. But she still had times when she was there and stuff like that and she was able to take me over you know. And I

I: Sorry, yes please go on

And I integrated well in the group, I did and I got on well with them and eventually it took a while but yeah I got on well there within the group. They were lovely people and yeah I miss, I miss not going actually.

I: What would good loneliness support look like for you? So for both of the forms of loneliness that you discussed.

I think it’s having trust and confidence in someone that you know you can talk to that you build a trust up with somebody, I couldn’t just talk to someone willy nilly and say about how I felt. I think you need that interaction of getting to know someone like I did with [name of support worker] That support, that feeling that you’re not being pushed that you’ve got someone that’s listening to what you’re saying internally and externally about how you feel lonely and taking it on board. Because I find, well, A like I said earlier I don’t find it easy to interact with people anyway very well sometimes, you know, but nice that, I think you need to have that trust in someone that’s gonna, you know, that’s gonna help you just be there.

And it was only my health visitor that actually was my saviour, she was amazing, cos she’d say, “Kate your house isn’t dirty, it’s untidy.” She said, “But that’s to be  normalised,” she said, “Because think about it, you’ve got four children,” she said, “If I came out of your house and your house was spotless, then I’d be thinking Kate’s got four kids, why the hell is her house spotless? You know.”  And she always, she’d take a cup of tea, she’d look about, if she saw the house untidy, she’d be like okay, have they put you on anymore meds? How are you feeling with your meds? She wouldn’t presume and then she’d say, “Are you, can you make me a cup of tea, can I have?” And I’d be like, “What you want tea? You’re gonna accept tea?” And she’d XXX, and then she’d say, “If you’ve got any dishes Kate why don’t we get on with them while we’re waiting on the kettle boiling.” So, she would secretly do lovely things, but I didn’t think that she was helping me that way, until later on.

You know she was the only one that wasn’t, and she came to my youngest daughters christening, asked the other two, I said, “Oh you know she’s getting christened,” and they’d say, “Oh we’re not allowed, red tape, we’re not allowed.” So, I said to them, “well I don’t understand that, because if I died would you come to my funeral?” “Yeah, we’re allowed to come to your funeral Kate. But we’re not allowed to come to your wedding or a christening.” So, I couldn’t understand that, and I’d say, “Well why won’t you come to something happy.” So I asked the health visitor, and I said, “I suppose you,” and she went, “Yeah, I’ll be there Kate,” she said, “Obviously I’m, I can’t come to your house,” but she never made it that she wasn’t allowed to, she said, “I’ve got to go and visit my uncle,” she said, I’ll come to the church and I’ll see your daughter getting christened. And I was like, “Oh my goodness,” and she got her a wee bank, that she’s still got to this day. And it just, well I hope I didn’t go off the story,

I: No, no, no, no, no, no, no, no. So, so the people like that, people, people that are [er] take their profession to, to, to more humanely, view people

Yes

I: more human, those, those people [er] can help you with loneliness in a way?

Yeah. And she’d speak to me about things about her life, like she’d sometimes say, “Would you want to go to the shops? We can go to the café for a cup of tea, you and I, and brew, Kate,” and she’d say “I’d still, am I allowed?” And she, she’d had this mini that her uncle gave her and [er] it was an old-fashioned mini, the old ones, and it was lovely and she’d talk about the mini and how she got it. And I was thinking, oh my goodness, this woman is talking to me about, you know her life. Obviously she wasn’t going to right into her, you know, but she was talking to me, you know about how her uncle gave her the car, and how she loves it, and she was just being normal. She wasn’t all about, “Right, Kate, you’ve taken your meds?” Tick the box. “Are you, you know,” well if, cos the other two would be like, if I said, “oh my voices,” cos they’d say, “How’s your voices?” Oh that, right, are you taking your meds? That’s why, if you’re not taking your meds, you’re good at that Kate. You’ll not take your meds.” And it was just totally different you know where she would talk to me different, she’d say, “How does the meds make you feel Kate? Does it give you any side effects?” You know and, “How do you feel when that happens? Would you like me to come and talk to you with the psychiatrist?” And XXX, because I felt that I couldn’t get talking, they wouldn’t listen, he wouldn’t even take his head off the, the, you know, the only time he would take, cos he’d go, “Right, come in,” and then he’d go, “Right,” and he XXX, and then he’d say, “Right have you taken your meds?” And if I went, “No,” he’d go, “What?” You know, and that was the only time he would show me his face. You know cos he wouldn’t even have that face interaction.

I:        So, in, in that medicalised [er] medicalised [er] world, there were only a few people that viewed you as a person?

I would say that up to that point sweetheart, one person, and that was the health visitor. And she was there really for xxx, she wasn’t, you know I feel thankful that I had my last kid because if I didn’t, I’d probably be dead, because due to having her I got my health visitor, and she was the first ever and only professional at that time, showed me compassion, she was lovely, trust, she was really lovely. I would talk to her before I’d talk to the other two. You know she, as I say she’d scan the house and see that it was untidy, but she realised that it was the medication that I was on. You know she’d say things like, “Have they put your meds up Kate? And how are you coping with that.” You know she wasn’t just saying, “Right, you’ve got to take your meds,” and that was it. You know she’s just be like, “Well how do you feel when you’re taking your meds? How, do you know do you feel lethargic? Do you,” you know, and, and she was listening. You know and it was great.

She’s my support worker I always talk to her as a, you know, as my friend and support worker and she, she’s inspired me to achieve a lot…

I: Can you tell me about [name]?

So she, she’s my support worker but her background is she’s a therapist.

I: Sorry, a therapist?

Yeah that’s her expertise and her background but she’s always kind of helped me with the right advice and the right skills and with my finances and with different, and she’s very supportive you know essentially she helped me to communicate with my family and to me she’s a hard working support worker and really I think she cares about the job or and no-one else, I like that about people who understand what their job role is about being a support worker.

I: Really good, really good. How does she help you with loneliness, is it like having a friend, [name]?

Yes so we’ve been friends for quite a long time and yesterday I had a really professional day, just a general it felt like she was being a friend but also giving that support as well, that you need and it felt like I had a really good day. A very positive day and it always has a really been, she works hard and she gets the, we’re always on top of our, on top of our game and if you read my communication blog its always positive stories about my days with my support worker and I really appreciate that I know how hard she works and how dedicated the job is and how caring it is and… I can use that tool to use my, my job as a leader and as a care provider to improve my skills as well and help other people in my professional background.

And then I got a phone call from the social worker and they said it sounds very isolated and he said did you know there’s a Hearing Voices group at [place] so I said no and he says would you like to go so I said no. But this guy didn’t give up he just kept encouraging me to go, he didn’t tell me to go he just kept reminding me it was there. And I went one day and it was a real eye opener and I was, I was scruffy, I didn’t wash I didn’t shave I was wearing rags and I went to this group and there were ten other people there but what struck me was they were all smart and presentable and I thought well they can’t, because I believed in the diagnosis schizophrenia then not now and I thought well they can’t schitzos, they should be scruffy like me. And they started to talk about their experiences and at last I thought I’m not alone with this anymore it was a liberating experience, I could take this mask off I’d been wearing for years and I felt I belonged somewhere and that was a big turning point for me

I: Very interesting, so finding people that had experienced similar situations than you made you feel like you belonged to a group?

It was like yeah it was like going into a family I, I could talk about what I wanted, no-one judged me.

I: Very, very interesting

Well even if it was only one day a week for 90 minutes it broke down that isolation

I mean at the end of the day, I did go to Gingerbread to see if I could find somebody else to help but at the end of the day, the women were just as bad as everybody else, you know, I was the outside because at the end of the day, I was a nasty man who was, you know, men didn’t understand that [um] so yeah I ended up being by myself so that’s the…

I: You didn’t manage, it wasn’t, you couldn’t connect to anybody? Nobody could connect to you in Gingerbread

No because everybody else, because all they did talk about, all they would, again that’s accusing but all they were were complaining women about their men, how shit they were, how they abused them and they were doing this and they were bad this and I’m sitting there thinking, ‘What’s this got to do with me?’ You know, I’m a single parent. You know, I’ve gone through crap too,” but they, they don’t seem to understand that, you know, [sighs] men can’t be dads basically, you know. Can’t look after kids by themselves. Only women can do that and that’s basically what I was against.