This story was kindly submitted to us by a carers called Sarah as part of a series to mark Carers UK's 60th Anniversary in Scotland.
For the past 23 years, Sarah has cared for her for her husband who suffers with mental health problems, OCD and alcohol dependency.
Listen to her story here or read the full transcript below.
You can find the other stories in this series at the links below.
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VIDEO TRANSCRIPT
Carers Scotland: As part of Carers UK's 60th anniversary, we've been speaking to a selection of different carers about their unique caring roles. Today we're talking to Sarah, who's going to tell us a little bit about her caring experiences.
Sarah: Hi, I'm Sarah. I care for my husband and I have done for the past, oh, 23 years. He has severe and enduring mental health problems, obsessive compulsive disorder to be precise, and more laterally is alcohol dependent.
And really, when I think about my caring role, I see it as a journey. It is one hell of a journey. It is, has been, still is one hell of a journey.
Yeah, it started off so 23 years ago, he wasn't even diagnosed. He was off work with stress, I think, because they didn't know what it was, so if in doubt, call it stress. And finally he was diagnosed, they came out with Obsessive Compulsive Disorder.
Now, I just thought “oh yeah, that’s fine”. I didn’t even know what Obsessive Compulsive Disorder was. But it just struck me as oh that’s fine, well we’ve got this, we can handle this. Yeah, I was really kind of blasé about it and really sort of warm and fuzzy about it as well. Oh, I’ll look after him, it’ll be okay.
And then we just left the room, you know how you do, you go out with this label and yeah, all hell breaks loose. But the one thing that the psychologist said to me, and I’ve always remembered it, and she was joking – kind of. She said “just watch out you don’t catch it”. And I walked away thinking “what?”. (laughs)
But as my journey with OCD, or with my husband’s OCD, has progressed, I know exactly what she means. But it just struck me as funny at the time – watch out you don’t catch it.
So yeah, it was all sort of, you know, bunny rabbits and fluffy lambs. It was all really nice and fluffy at that point. But then, it’s like as soon as he was diagnosed, it gave the demons licence to come out, the OCD demons. And that’s not my word for them, that’s what the consultants, all the consultants you talk to, that’s how they refer to OCD, as a demon.
Yeah, it was just like a licence to let them loose. My poor husband was just absolutely floored with it all. And of course I’ve got no idea. I’ve got no idea about anything. God, if there was ever a need for a handbook, that was it, you know? And psychiatric services do their best but, you know, their best is never enough.
And I just came face to face with all these demons. Things like he was, he… His obsession is that he has committed crimes; horrible crimes. Heinous, murderous – crimes you couldn’t even imagine, but his head imagines them. And it imagines him committing them. And that tortures him, and so he spends his life making sure he’s not found out. So he has to cover his tracks at all times.
What you have to remember is that he hasn’t committed these crimes. It’s such a warped and perverse way of living. So, he won’t go near pens, in case he confesses with a pen – i.e. writes down a confession. He tries not to speak to people, full stop, in case he’s confessing. He can’t stand me – you know, he has real trouble with me writing things and talking to people. It’s like I became part of this whole sick – ugh – cycle of, you know, wrong thinking, I think is the gentlest way of saying it.
So our lives, both of us, became ruled by his OCD demon.
Carers Scotland: It sounds exhausting. To be involved in this conspiracy that’s not even real.
Sarah: Exactly! It’s mind bending. He would say something to me like: “Did I just confess to that person?”. And he would want me to check bits of paper – like if he had to write something down, he would then want me to check it. And I’d be looking at this piece of paper, looking for something that I knew wasn’t there. And he’s paranoid about little bits of paper because he assumes he’s written confessions on them.
He assumes he’s written on bits of paper, and he assumes these bits of paper are everywhere: stuck to his body, stuck to my body – they’re everywhere. And he needs me to hunt these bits of paper down, and that leaves me hunting for things that I know don’t exist.
On the other hand, if I say to him: “Yeah but this is just your OCD, these bits of paper don’t exist”, that causes him immense trauma. So, you know, where’d you go with that? Where’d you go?
And you know, a handbook was needed. I almost needed a resident psychiatrist. And I became incredibly adept, I still am, at being the OCD councillor. There is nothing I don’t know about OCD now. Even though the amount of consultants I’ve talked to and he’s been on residential, he’s been on a lot of in-patient therapy, in-patient weeks – weeks on end. And you know, I’ve become an absolute expert, all to no good because none of it’s actually helped him really.
Then, over and above all this… So, I’m the psychiatric nurse. I’m the supportive wife, I’m the psychiatric nurse, also of course he had to retire from work, and that caused big financial problems. We’d just taken out a mortgage and whack – his big salary vanishes. You know, so yeah, it was difficult and I had to navigate through that: the benefits system and all that stuff.
And then, just to make matters worse, and entirely because of the stress of all this, I was diagnosed with ME. So I had to give up my work too, so then I had to retire. So then my finances were scrambled. So I am now, as well as being the psychiatric nurse, I’m having to reconstruct our whole household finances and tackle benefits, you know, for both of us, and pensions and whatnot.
Carers Scotland: It’s a complicated system at the best of times.
Sarah: Complicated indeed.
And we were both wracked also with guilt I guess, and it’s hard when you lose… I mean, we were both teachers, so it’s hard when you lose your profession. And, you know, what does that leave you as, you know? We both struggled with that.
Then, alcohol reared its ugly head. Gradually. When he stopped work, there was nothing, his routine went and alcohol crept in. It’s really insidious. It was several years before I even noticed that it was a problem to be honest. Cause what’s wrong with having a few cans of cider that the weekend? But it became worse and worse, and it became apparent that it was a problem.
So, I don’t know who got support for that first, him or me. Because it was messing with my head big time. It was messing with our relationship. Yeah. So, I had to get him support and I think that kicked off support for me. But, yet again, you know, support services, they can only go so far. And they didn’t go far enough.
So, again it was me who had to become the expert on alcohol dependency, and it was me who ended up being the alcohol support worker. But actually it’s a tricky one to be as well as a wife because, well, as a wife I send so much time being angry, sad, devastated – but then on the other hand I’ve got to be the alcohol support worker, so I had be neutral and…
Carers Scotland: Yeah. Yeah, that’s difficult.
Sarah: Difficult, yeah I mean really, all I wanted to do was murder him half of the time. (laughs)
Ha – right, and then Covid hit. Now Covid - the lockdowns, they were the end of him really. He vanished at that point and he’s never returned. Because, his routine went out of the window. He did a bit of, you know, he used to get the bus into town type thing, have a coffee and come back. That was the extent of his world. That stopped and it was replaced with all-day drinking. And quite literally, all he did, and all he does now: gets up, gets the alcohol, drinks the alcohol.
And with Covid as well, all the- you know, all the guidelines and the restrictions and whatnot, he wasn’t sticking to them. He was kind of oblivious to them – it totally missed him. You know, he was like the only person who was kind of oblivious to everything. So, I sort of became the Covid police at that point.
Very early on in the first lockdown he got- Well, the busses must’ve been running, Yes, the busses were running. He got a bus into town, jumped on a train, and headed off to London. And this was the essential workers only who were meant to be doing this. And I had to decide what to do. Did I call the Transport Police? Did I… It was awful! And then when he came back, I was terrified. It was at that really early stage when we were all convinced we were going to die, and I was terrified when he came back.
You know, London was like, the seat of the worst viruses possible in my mind, and he was coming back, and he wasn’t following restrictions, and he wasn’t doing the sanitising or the hand washing or anything like that. Yeah, and he just wandered back in the house.
Yeah, it was. It was scary. And at the vital moment as well. The GP surgeries of course, were in turmoil during the lockdowns, they decided to withdraw his diazepam, for various reasons. So that… I mean, I remember saying to the GP, you cannot do this now, you know? You can’t do it!
Carers Scotland: Not the best timing.
Sarah: Not the best timing! And that just opened the gates actually, for more drinking. So that that's actually what that achieved. It rendered him utterly alcohol dependent.
And strangely enough, as he got more and more alcohol dependent, his OCD sort of lost its teeth a bit. I think to run a really successful OCD campaign, you've got to be really on it, because it's so complex. The thoughts that are going through your brain are so complex. So if you're a bit- well, if you're drunk or hung over, you know, you can't do it. So yeah, his OCD has lost its teeth.
However. His alcohol dependency is utterly horrendous.
Carers Scotland: Like one problem’s just replaced the other, almost.
Sarah: Yeah. Yeah. So now, I mean, he needs help with personal care now. His mobility is awful. He's got such cognitive impairment, alcohol damage, that he presents with dementia.
Yeah, so now, I don't know what I am now. I'm, I'm the dementia nurse. And I'm and I'm the personal carer, personal care provider.
And right now, for the past week, well, I think actually we are coming to the end. He's had a lot of help with his alcohol. A month ago was dried out and in a detox, he was in for 10 days, and they sort of said, well, this is our last attempt. We can't do any more. And I think you would now describe him as in end stage alcoholism.
So, now, as a carer, you can't care for somebody who's an addict. Because the two- If you're with somebody who is has an addict, who has an addiction, you are not meant to help them get the drug of choice.
Carers Scotland: Of course.
Sarah: Fine. So I don't buy him the alcohol. However, if you're a carer for somebody and they are desperate for something-
Carers Scotland: You're going to do whatever you can for them.
Sarah: Exactly.
So it's, it's a nightmare. Yeah. Yeah, I mean, this is really raw at the minute because like I said, this last week, I think he is in end stage alcoholism.
Carers Scotland: It's so difficult.
Sarah: It's beyond difficult.
I have been helping him get alcohol. Because, two reasons: I can't bear seeing the state he gets in without it. And second reason; it's fearsome, it's frightening when you're in the presence of somebody, a big person is desperate for something and you're a little person.
So. But, see on the other hand, I've been really caring. Yeah, it's unsolvable. Just last night in the middle of the night I started Googling how'd you care for somebody with an alcohol addiction? Probably should have done that a long while ago. Anyway, I just did it last night about midnight or two o’clock in the morning, and the clanging message was: walk away, stop it, stop going, walk away.
So literally as of today, that's what I'm doing. I'm not calling ambulances anymore for him. I've called the ambulance a lot of times in the last week because he's falling over, he’s unconscious. It's horrendous.
So I think, actually, I have quit the caring role. Because you cannot care for somebody who is in end stage alcoholism. So there we are, that's the end of the journey. I don't, I honestly don't know where it goes from here. Who knows? But yeah, there you go.
Carers Scotland: Thank you for speaking to us and sharing your experience. It sounds just so difficult and an impossible situation in many ways.
Sarah: Yeah.
Carers Scotland: Especially as alcohol, or any kind of substance or misuse, is definitely something that maybe people don't necessarily think of straight away when they think of someone who is caring. I think it hints a very different picture of what caring can be and, like very unique kind of challenges of that as well.
Sarah: Yeah.
Carers Scotland: Well thank you for talking to us today about it anyway. It's been very enlightening and interesting.