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Sheila

Age at interview: 64
Brief Outline: Sheila was always against ECT because she used to help out in an ECT suite 20 years ago. However, when her husband experienced problems she found out more information about ECT and thought it may help him. Now she doesn’t feel it has helped him very much but has seen it benefit others.
Background: Sheila is a retired nursery nurse, has two children, and cares for her husband who suffers with anxiety and depression. She describes herself White British.

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Sheila’s husband always experienced bouts of depression and anxiety. Over the years he has had to have time off from work when he felt unwell. Sheila says that it used to be a family joke that her husband had OCD type tendencies but over the last three or four years he has been diagnosed with OCD and Sheila feels he has now become ‘quite poorly’. Now she says that the anxiety he experiences never goes away and the thoughts and fears he has (about killing her and other family members) cause him a great deal of distress. 

About eight years ago Sheila’s husband had to give up work on a permanent basis because of depression and anxiety. Sheila also finished full time work so that she could be with him. Her husband has taken a total of six overdoses and these experiences have affected their whole family. She says each day she doesn’t quite know what will happen. Her husband has had some psychological therapy but it wasn’t working as well as they’d hoped. After his first overdose he was admitted to a psychiatric. He came home but took other overdoses and has spent time in other wards. Sheila thought that the medication he was prescribed didn’t help him as he still had pervasive thoughts.

Sheila’s feelings about ECT go back to 20 years when she worked in a mental health unit. She felt she wouldn’t like for any of her family members to have ECT but was later offered ECT as a treatment for her husband. She felt like she wanted to investigate the treatment thoroughly and looked up lots of information about the treatment. She was taken around the ECT suite which she thought was helpful and spent some time with the staff nurse to talk her through the process. She had discussed it for about 2 weeks and decided to go for it because she felt that her husband could benefit from it after seeing how other people had progressed and how things had changed compared to the old treatment. 

After the first ECT treatment Sheila’s husband (aged 65) was in his bed and felt ‘really strange’. However, the next day he did feel a lot better so Sheila felt it was the initial treatment he reacted to. At first the ECT didn’t seem to have much effect on him. He felt strange and funny and she was told that he wasn’t having proper seizures after five treatments so they didn’t offered him any more sessions. She was told that this may be due to the anti-seizure medication he was taking for a stroke and a previous overdose. The consultant reviewed his case and he had six more session where he had “proper seizures”. He wasn’t sure whether he wanted to have the treatments but he did opt for them in the end. Sheila feels that unfortunately, although it did help him to start with, ECT didn’t help him in the long run. She found that doctors followed up with her husband at three months and then six months, to see how he was feeling and they did a series of mini tests about his cognitive abilities. They asked him about how he was feeling and if he felt the ECT had helped him. 

Once a month Sheila goes to a carer’s support group. She says that she has made a lot of friends through her husband’s illness. She likes the carers’ cafe where treatments are offered. She feels like she has a good support network as well. She has also asked them to attend meeting with health professionals. 

She finds that her husband’s mental health has had quite a knock on effect on her well-being and she herself has been taking anti-depressants. Now she just wants him to be able to spend time with the family or as a couple and be able to enjoy it.
 
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Sheila’s husband had anxiety and depression “on and off” over the years. They used to laugh off his obsessive compulsive disorder but over the last 3-4 years it has become much worse.

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Well we’ve been married 43 years now. He’s always had anxiety, depression on and off. Sometimes he’s had to have a week off of work, or two weeks off of work, because he hasn’t felt well. He’s been, over the years, he’s been given different medication to try and help his situation. He’s always had, he’s always like things neat and tidy. And we sort of laugh and go, “Oh here he is with his OCD.” And just you know, but really it’s the last three or four years that it has really, really made him quite poorly. 

He’s become very, very anxious about things. He says it never goes away. Even if he feels better, you know, if he’s having a better day. But yes it’s probably over about the last four years that he’s been as bad as he is at the moment, yes. 
 

For years Sheila thought her husband was just ‘anxious’ but later he developed severe obsessive compulsive disorder. He has intrusive thoughts about killing himself to stop himself from killing others.

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Well we’ve been married 43 years now. He’s always had anxiety, depression on and off. Sometimes he’s had to have a week off of work, or two weeks off of work, because he hasn’t felt well. He’s been, over the years, he’s been given different medication to try and help his situation. He’s always had, he’s always like things neat and tidy. And we sort of laugh and go, “Oh here he is with his OCD.” And just you know, but really it’s the last three or four years that it has really, really made him quite poorly. 

He’s become very, very anxious about things. He says it never goes away. Even if he feels better, you know, if he’s having a better day. But yes it’s probably over about the last four years that he’s been as bad as he is at the moment, yes.

The referral that’s been made recently for him to see a professor who specialises in OCD which they have said that my husband’s got OCD. As in, it’s not OCD as in hand washing and things like that. The way they described it to me, is because he has very intrusive thoughts about killing me or our grandchildren, and he knows that he would never do that that they are thoughts, but they are so intrusive that they are there. That if he kills himself he then won’t be in this turmoil that he’s in and we will all be safe. So this is where they’ve got the OCD from. Because I always thought it was always being tidy, putting things in place and everything. I couldn’t see to start with where they got the OCD from, but that’s, that’s where they get it from, because as I say rather than him killing me with a knife or our grandchildren he wants to kill himself. 
 

Sheila’s husband is allowed to leave the psychiatric unit during the day. She took him fishing, which he used to love, and although he found it difficult, she tried to encourage him.

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I mean he does come out. He comes out the odd times for like a few hours. Sometimes he’ll come out for half an hour and I’ve to go back because he’s in a state. We usually try and work through it and he comes home and I said, “Oh well we’ll just do this or just do that.” Last time he came home, we actually walked round the shop and we got the paper and did a little bit of shopping just round the corner. He I have to sort of keep going over these hurdles and saying, “Well don’t go back yet, have a bit of lunch with me.” Or do something like this. And usually once he comes out, he’s out for probably six hours or longer. I took him fishing a few weeks ago because he came home and, “Oh I don’t know what to do.” And he lays on the settee and I think well really he needs to be doing something. So I said to him, “Would you like to go fishing?” Which he hasn’t done for a couple of years. Which used to be his absolute joy. He used to love fishing. So he said, “Oh I don’t know if I can.” Anyway we talked about it. He went and got his fishing tackle out and we went fishing and he got himself in a real tizz when he got there, his float wouldn’t float, he couldn’t do it properly, and I said to him, ”Just calm down. Take a deep breath.” You know, “I can’t do it. I’ve lost it. I’ve lost it how to do fishing.” I said, “You haven’t, just take your time.” And he did and he caught seven fish. But all of a sudden his thoughts came back again and I had to help him pack up. I was worried that he might take a dive into the water, because he was getting very distressed. He didn’t. And I had to take him straight back to the unit, whereas he had hoped to come home, have a bath and a shave before I took him back but he felt, then he felt he was a failure because he couldn’t even go fishing without his thoughts being there. But I said to him, “You’re not failure, its, you’re not failing, you’ve done it, you know.”
 

Sheila talked about the effect her husband’s mental distress and overdoses had had on their family. She gave up full time work in order to support him.

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Well I’ve, I finished work full time, so that I could be with him. I used to do two days a week. But, so that I could maybe be with him. He hasn’t, he’s lost his confidence about driving. He’s changed, he says he’s lost his emotions. He, although he knows he’s got a home, he’s got me, he’s got our daughters, he’s got a good support network. He can’t see it like that, and he knows, and he’s had the Crisis Team involved with him. He’s… totally changed with everything and I’ve found it quite difficult. So much so that its happened every, well only once it’s happened while I’ve been here, no twice actually, that he’s taken overdoses, and he’s taken six overdoses. The first ones were when I was actually at work and once he took, eighteen months ago, he took a massive overdose, he took anything and everything he could find in the cupboards. And I spoke to my daughter. I went to work and I was really worried about him, and I spoke to my daughter who was taking my grandson to playgroup and she was due to come in and see my husband at quarter past twelve when she picked up my grandson up. But I said to her, “I’m really worried about Dad.” I said, “Do you mind popping in?” She said, “Well I’m going out into town, but I’ll pop in Mum after I’ve dropped my son off at play group.” And she did come in and she actually saved my husband’s life, because he hadn’t even made it to the bed, he was unconscious at the top of the stairs. Now if she had come in at the time that she said she would, if I hadn’t have rung her, she would have found him and he would have definitely gone, because he ended up on life support and in Intensive Care because of what, you know, what had happened. 
 

Sheila liked a carers’ café where she could get beauty treatments. She went to a carers group and people from the group have come with her to meetings with healthcare professionals.

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And also they run a carers café which is good because you can have a massage or a pedicure, or… I’m not sure what else they do. Oh I think there’s a hairdresser goes to them, and that’s once a month as well. And for about £2, it used to be free but now they sort of charge for a treatment, but it’s well worth, it’s well worth that. So I do try and go along to the carers cafés as well. Take my grandchildren if they’re around because they like going there and playing because there’s an area for the children to play. And so I do feel I’ve got a good support network as well, and the people that work for [name of service] in [name of town] are very supportive and they, they’re there for me. They say I don’t use them enough. But you know, I don’t like to bother them. They’ve got everybody else’s problems as well. So I don’t, you know, but I know that they’re there if I need them. Or if [coughs] I’ve had professionals meetings which I’ve asked them to come to and one of them has always been there for me and that. So I feel they’re supporting me. They also have been to ward round, on the odd occasion which is good, so I feel that I’ve got the support as well.
 

Sheila had some knowledge about ECT from when she worked in a mental health unit twenty years ago, but wanted some up-to-date information. Getting more information gave her a “bigger understanding” of ECT.

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You said you had a look online and read leaflets and so on. What was it about ECT that you wanted to find out?

Just really a bit more up to date, what it’s like now, rather than, you know, years ago. And obviously I feel now I’ve got more of an understanding of mental health than I’ve had in the past, because I try and go to meetings and things or any help that I can get. I try and go to them. But yes, I mean they obviously explain that it’s not as bad as it used to be and that, you know, the leaflets were really sort of just explaining exactly what goes on, and that you’ll be put to sleep and you know, you’ll be woken up not long afterwards, because I mean like the patients don’t know how long, you think oh ECT, is that going to take an hour or, but it is a very, very short, you know, short time that you know, you’re back in the recovery room and things like that. Yes, it just sort of really helped me understand it even more, because when I was actually working with it I didn’t have, well we didn’t have the internet then. So you know, I didn’t really know much about it. So it gave me a bigger understanding of what it’s like.
 

Sheila worked in an ECT suite twenty years ago and didn’t want any of her relatives to have it. When her husband was offered ECT recently she thought treatment might have improved and read up about it.

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Well my feelings about ECT go back to over 20 years ago when I worked as a nursery nurse in a mental health unit, and part of my work as a nursery nurse was to help out in the ECT suite twice a week, and I saw, I had to help, I had to be with the people when they were coming, when they were having seizures after the ECT and just assist in the ECT suite, and I always said I didn’t want anybody belonging to me or any of my friends ever to go through what I was experiencing. 

20 years down the line my husband has been offered ECT and I thought back to my words. Oh is this really what we want? Obviously things have changed over the 20 years but it’s still the same initial ECT. So I spoke to the staff who recommended it, I spoke to the consultant who recommended that my husband had ECT. 

I was given literature to read up about it. I also looked on the internet at things, so I sort of really thought I needed to go into it in depth. 
 
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Sheila’s friends reacted with “shock and horror” when they heard her husband was going to have ECT. She reassured them it isn’t “like in the films”.

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It was difficult. Very difficult. Hm. And when I sort of said, when I said to friends or colleagues and things and I said, “Oh he’s going to have ECT.” “Oh my” And the shock horror or ohhh. You know, and I said, “No, it’s not, it’s not barbaric like you see on films and things, it’s, it is done in a caring way, you know. And they don’t treat it lightly. They really do sort of think well it could help you. 
 
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Sheila didn’t want to leave her husband in hospital with “very poorly people”. Unlike when Sheila worked in psychiatric units over twenty years ago, there was nothing for him to do as he recovered.

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And what was your first experience of psychiatric units?

I don’t know really. I’m trying to think back to I was, oh my goodness, obviously there’s some very poorly people there, do I really, really have to leave him in a place like this, when I didn’t feel that he was that poorly. They, when, the first unit he went to in [name of town] they said, “Oh he’s such a lovely man. He you know, he’s great.” And because by the time he sort of left there and went to, in fact at one stage they were just going to discharge him straight away and then they decided that he really need to go to a local, more of a local unit and I don’t know. Some of the people that were in there I really didn’t want him to be with but I knew that he needed the help and with encouragement from the staff and doctors there, he did, he did come home, but yes, you know, and over the years, obviously I’ve got to know the units a lot more and they’ve got to know me.

What’s been your relationship like with the staff at these different units?

Okay, yes, there are quite a few concerns that I’ve had about the units. A lot of it is lack of OT. The it’s, on the notice board there’s a great big timetable, but unfortunately it doesn’t happen, so I’ve sort of taken this further with managers and things, because not just for my husband but for the other patients that are in there as well, because as one man explained to me, “When I came in here a couple of weeks ago, nothing bothered me. I felt so ill that I just wanted to lay on my bed. I just didn’t want to be with people.” But he was starting to get better and feel better, but there wasn’t anything for him to do, and he was frustrated and bored, and I’ve actually found, that especially the unit that my husband’s been in for the last fourteen months there’s a lot of bored people pacing about for the lack of things to do there. So I have, you know, I don’t find it at the moment, but they’ve moved to new premises now, so I’m hoping things will change [small laugh]. But yes, I do think there needs to be more to stimulate them. I mean I’m going back to 20 odd years ago, when I worked at one of the units, there was a lovely woodwork room and there seemed to be more for the patients to do then there is now. Whereas things should have moved on more rather than gone backwards and I’ve sort of expressed my views about it. 
 

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.

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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.
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