Steve

Age at interview: 60

Brief Outline:

When Steve first met his wife, over 30 years ago, she had already had ECT for depression. During various periods of depression, she had ECT when nothing else worked. Only recently has Steve described himself as a ‘carer’ and says that there are long periods in between episodes of depression where his wife is well.

Background:

Steve is a graphic designer, is married and has two children. He describes his wife’s ethnic background as White British.

More about me...

Steve’s first experience of serious mental health problems was over 30 years ago when he met his wife. His wife had already experienced mental health issues before they met and had already been treated for depression using ECT. Steve thinks that ECT has worked for her when nothing else has. He described how there used to be ‘a positive response’ within days of his wife having ECT, and that within a week she showed signs of a ‘strong recovery’. During these early admissions to hospital, Steve received guidance from his wife’s parents, as they had had previous experience of their daughter’s condition and treatment. He would also find out about ECT through his wife’s account, not via clinicians. 

Steve described how although his wife was diagnosed with bipolar affective disorder, “99%” of the episodes were when she was depressed. His wife would experience suicidal thoughts, not want to wake up in the morning and go into ‘a complete black hole’. In the early days, she was treated at a private hospital close to where they lived. He described how the psychiatrist usually made the decision to perform ECT within a week of her admission and she would have around six sessions of ECT. Later, his wife experienced a period of postnatal depression. After ECT treatment she had to be reminded what her second child looked like. He thinks her memory was significantly affected in the short-term but Steve thought that that memory loss may have helped her get over depression in first instance, helping ‘jump start’ her out of depression. 

Steve felt that his wife’s depression can come seemingly out of the blue, and that there are long periods between episodes where she is not depressed. When she was depressed, his main responsibility was to take over the care of their two children. Now the children are grown up, he relies on them as well for support and understanding when his wife becomes unwell. It has been only recently Steve began to think of himself as a “carer”. He met with his local MIND group and was told he was entitled a bursary for a break. Steve has preferred talking to people one on one, and not with a group.  

Now one of his roles is to notice signs of when his wife is starting to over organise lots of activities i.e. when she starts to become unwell, and to step in and cancel some of her arrangements for her. Although he feels able to speak to friends about his wife’s mental health, Steve has been a little more cautious about telling people his wife works with about her mental health. He has found that previously people have been a bit ’squeamish’ about ECT and that they didn’t know very much about it. 

Steve’s wife is now treated by the NHS. She is treated as an outpatient which Steve prefers as he thinks the atmosphere in the wards isn’t therapeutic. He had difficulty arranging transport for his wife after the ECT sessions, as he wasn’t always available to pick her up. Steve gets the impression that ECT is increasingly used as a ‘last resort’, and yet is the only treatment that has really worked for his wife’s depression. He also has noticed that whereas she used to respond within the first few treatments to ECT, she now has 10 treatments and may only respond after the course has finished. His wife gets anxious when ECT no longer works as fast as it used to.

Steve googled his wife’s condition and found that things listed for ‘the signs of depression’ were similar to his wife’s illness. He found internet forums for carers interesting.

I looked a few years ago now for, I think I Googled bipolar, and then to talk about, to try and find information sites for carers. I don’t think I used the word carers. I just thought bipolar family and friends sort of keywords like that, just to sort of get information. The signs of depression. What to look out for. All of that you see I had never been told. I know you shouldn’t pigeon hole people into things but there were certain things on this list to look out for which yes, I could see those were coming up in my wife’s illness, which I’d never really seen before in terms of these are the types of things to, you know, this person will suffer with, and also that went on to various sites, where forums and chat lines where people were talking about their experience as a carer for their partner who’d been experiencing this illness and some of them dealt with ECT, so that was interesting. They weren’t video clips or audio. They were just written in as I said sort of forums really, just people talking about it. So that was, that was just me sort of proactively looking on the web, and you know, the web in something I’ve only started using in the last ten years, so before then there was nothing. I suppose there were books and pamphlets but I was never given anything.

Steve describes how his wife’s depression looked ‘from the outside’. There were peaks and troughs, but when it got bad she usually had ECT and felt a lot better within a week of being home.

But as someone on the outside of it, I definitely saw, you know, the physical side where she would just not want to get out of bed, not want to associate with other people, going into a bit of cocoon and so that would go on for weeks really, and you know, she’d be sort of at rock bottom, but she’d be kind of bouncing off “the bottom” a little bit. There’d be sort of peaks and troughs I guess, but she did go through depression for weeks at a time and then if it got so bad, we would then go the route of the hospital. She was being treated privately at that time and went into the hospital near us and she’d be taken in and assessed there and they would usually move on to ECT within a week of her being there. She may have stayed in, she may have had about six sessions, I think in the early days when I knew her. I think she would have about six treatment episodes, probably two a week, so she would have been in there about three weeks with her first week just being assessed, so her period of stay would be about a month, and then she’d come out and you know, 99% of the time she’d be doing a lot better within a week of being home, and then that would, she would progress to how she would normally be within that month I would assume and then you know, we, or she could go through years of enjoying good health and then just out of blue she would have a bout of depression and if it was severe then that would be the route we would go, where she’d go back into hospital and be treated with ECT. So I’m not saying it was a last resort, but it was just something that always worked for her which is why she always asked for it as well. 

Although Steve wasn’t able to attend any meetings he was in contact with his local MIND group, which organises meetings for carers. He wasn’t sure it would be beneficial to him and had mixed feelings about groups.

A lot of form filling. I seem to remember there was some sort of holiday break, respite, financial thing going on, which I had a little bit of money for a break. And so yes, I just gave them some feedback really. I think it was form filling. I can’t remember their being an interview as such. I think the, the nurse just wrote down some information and that was sent in to their system, which then went into the MIND, and they contacted me via that meeting.

And then I had an interview with them, with MIND, a person from MIND, and basically they were then telling me about the MIND setup and did I want to go… They were basically just telling me what was available to me as a carer in terms, they were starting up local meetings basically and they were going to have an introductory day. Unfortunately I haven’t been able to go to any of them because they were when I was either working or on holiday, but I’ll probably try and get to one or two of them, but I think they were kind of groups. They were putting together groups of other carers to get together, and just exchange knowledge and give advice I suppose, but there were quite sort of casual type things going on, but that was my sort of introduction to the carers meetings, yes.

And I know you said you haven’t been able to get to the carers meetings since?

I haven’t no.

What are your thoughts on having a bit more of a, I guess formalised involvement, in that sense?

I probably wouldn’t be that keen on sitting with a group, but I suppose something smaller than that, you know, I don’t mind talking to people in the profession to, to give them my experience whatever that is, but no I think the group thing would be too wide an area, it would be just people there from completely different areas of care to myself. I’m not sure how beneficial it would be. I might go to one, just to see what it’s like, but I’ve got sort of mixed feelings about it really.

Steve’s wife first had ECT in the 1970s and has had several courses of ECT treatments over the years. Steve thinks that although ECT does work, she now seems to need more treatments before she responds.

And my own recollections of when she came out of hospital and how she was and, and generally how she improved, and she always seemed to have, it seemed to have a positive effect on her. It may have taken longer sometimes. She tends to get a little bit anxious when she has ECT, that she feels it’s not working. You know, after two or three sessions she’s start to get anxious thinking by now it should have had an effect, but obviously her psychiatrist will say, “Well we’re going to give you ten sessions, you just have to be patient.” I guess she’s just been measuring it against her past history. But she has recently when she’s had it the last five years noticed that she needs the frequencies to be increased, and she gets a little bit alarmed that she doesn’t notice anything herself and to be quite honest I haven’t really noticed anything positive in the last in the first three or four sessions, but over a period of time, and sometimes you know, even though she’s had ten sessions of ECT she’ll come home after her tenth treatment and there’s no distinct positive effect, but it tends to slowly work its way into her system and that after a few weeks then we start to have the benefits of it. 

But I guess in the early days when she was younger, she noticed it almost immediately, and she would tell you sometimes, even after one treatment of ECT she would definitely get a sort of buzz, a positive effect from it and I guess that’s what she looks back to, and she measures that by what she’s having, had recently, but yes.

When Steve’s wife was transferred from a private to an NHS hospital he noticed it wasn’t a relaxing environment for her. He felt it was better for her, and for the NHS, when she had ECT as an outpatient.

You know, in those days she went to a private hospital. It was quite, you know, pleasant for her to be in. It was like a sort of hotel where she had her own room and everything. But then when BUPA pulled the plug on her she went the NHS, the NHS route and it was, it wasn’t the holiday hotel sort of situation. They were “people” there extremely ill and it wasn’t really a relaxing environment for her to be in. So I was quite pleased that she was able to get ECT as an outpatient. Better for her, and better for the NHS, because it was an expensive process for her to be kept in a room for a month when all she was doing was hanging around waiting for her next session of ECT. Which was twice a week. That was all they were giving her. 

So the rest of the time she was just waiting there for the next episode.

Steve said he didn’t really consider himself a carer, more a husband.

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. 

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.

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.