Elaine - Interview 32

Age at interview: 60

Brief Outline: Elaine was the main carer for her father for the last four years of his life. He suffered from vascular dementia and Elaine feels both he as a patient and she as a carer were let down by the system.

Background: Elaine is a retired nurse. She is single and has a grown up daughter. She became a carer at age 56. Ethnic background: Mixed Afro-Caribbean/ White European.

More about me...

Elaine (60) lives in the South West of England. She cared for her father from when he was diagnosed with vascular dementia in 2002 and until he died in 2007.

Her father was diagnosed while in hospital to investigate pains in his knee. Despite wanting to go home, he was kept in hospital for a while, and, Elaine says, sedated against his will. Elaine and her brothers disagreed about what would be the best solution for their father, but after some time he returned home where he was able to live with assistance from professional home carers and from Elaine. Elaine noticed a big improvement in him when he was taken off his medication.

Although Elaine had concerns about the quality of the care given to him at home, she believed it would be best for her father to stay in familiar surroundings where he could continue his daily routines. Over the next couple of years her father's physical health got worse and he was hospitalised several times. Elaine felt his dementia got worse in hospital, and when the doctors suggested that he would be better off in a psychiatric unit she disagreed. On one occasion, she took him home without the hospital's knowledge to avoid him being sectioned under the Mental Health Act. When he eventually was sectioned, he had just been diagnosed with bone cancer and was very ill in hospital and Elaine didn't think it was safe for him to be moved. She is very unhappy with the way her father was treated in the psychiatric unit, including the hygiene, feeding and medical care. She doesn't think he would have survived long had it not been for her intervention and her background as a nurse. In the end, her father was moved to a nursing home where he died in the Summer of 2007.

In the process of working to get better care for her father, Elaine says she fell out with many of those involved. She strongly disagreed with their professional judgment. As a result, she lost trust in the professionals and she felt they saw her as a 'difficult relative'. At one point, she says, a consultant seemed to suggest she also needed psychiatric care. She says it is difficult to remain calm when you are in a desperate situation, and she thinks there should be a service available which could mediate between service personnel and carers.

Elaine says she felt very strongly that her father's rights and his freedom was taken away from him during this experience and that she needed to protect him when he couldn't do it himself. Elaine's father was from the Caribbean and Elaine herself is mixed Afro-Caribbean/White European. She says the history of slavery and discrimination makes people from her ethnic background very vulnerable when feeling their freedom is taken away. Trauma can be felt at a deeper level, she says, when there is a history of persecution and domination.

She thinks her father would have died in hospital had she not intervened using her skills as a...

So basically they were going to let my dad die. They could have covered up all of their neglect. So, -but they weren't feeding him and I know, I think they were just throwing the food away, because the way things were emptied, like the soup thing and the plate, it didn't look like, because, you know. And also, because I've worked in a hospital I know what happens. So I went away for a while thinking I've got to go out for an hour, and I came back at about 5 o'clock and I looked at my, -because I was always looking at my dad's charts and I'm going, his blood pressure is going right down. It was like 75 over something. I'm thinking it should be at least 120, and my dad's all like, and he's lying flat. They were going to just let him die. So I got, -I woke my dad up again and I got him a drink and I said, 'I'll be back in a minute'. I went out and there was this junior doctor on the ward and I said, 'I trained as a nurse. Can you tell me what my dad's haemoglobin is please?' And he said, 7. So I said, 'so when is my dad getting a blood transfusion?' So of course they had to do it. He obviously checked with his boss, and then I stayed there until, -whilst he'd put the blood up and I said, 'Dad', because my dad had kept pulling out the drips. But they weren't, -he was just so unhappy. He was like, it was just like I kept saying, well my dad shouldn't have been back round here. He should never have been moved from this hospital.

Having been attacked herself, Elaine worried about her father when he was in hospital (played by...

Earlier in the, at afternoon visit I went to leave the ward and I said to one of the nurses, like asked her where the public toilet was so she told me and as I was turning to leave I had this pashmina round my neck. I caught the eye of this woman who I'd seen being violent before coming up to me and I'm thinking, 'right I'm going, I'm getting away from her'. And she caught me by my scarf and was just like, I was being like half strangled. It took three really big nurses to get her off me. So just like more, it was just like, I was going like this more layer and layer of trauma and stress and bad treatment, and it was just like as though it's a nightmare, I kept thinking, 'oh I'm going to wake up, and this is like, this isn't a nightmare', this is going on. So as I went back because my dad was, I'd told my dad I was going back and I went back in three hours later. That's right, I went to see my auntie, went back thinking if somebody else comes up to me I'm just going to wallop them because I've just had enough. So then there's this, yeah, this bang and the crash and the nurses are running around. Then they realise the problem's in the side room opposite my dad. Oh, they've moved my dad to a side room closer to the nurse station by now and they'd given him like a bed table because we'd asked for things, but only because we'd requested it. And then the nurses were, couldn't get into this room opposite and it was in darkness. It was the same three big nurses pushed their way into this room. It was a man, it was a male patient in there on his own I had noticed the day before. They put the light on and I could see these naked legs and I'm going 'oh', I'm like 'now what?' And it was the woman who had attacked me earlier and she was naked, and I'd seen her naked before from the waist down in a male dormitory on the ward, on the floor. And I'm going, like 'what?', you know. So she's been in there, she could have assaulted that man. How do I know she's not in here interfering with my father when I'm not here, who's vulnerable?

Elaine's father was sectioned and moved from the general ward to the psychiatric ward against her...

It was one of the worst days of my life, Jorun. And I just felt like everything I had campaigned for and kept my dad safe and independent and free, and my dad was looking ill, you know. I'd seen him earlier in the morning, at 9 o'clock in the morning I went in and he was doubled up in pain, and he was clearly not ready to be moved anywhere. And obviously he had bone cancer everywhere so any move was just making him feel worse. So eventually they called me in and I saw, I was just at boiling, at like blowing up point. I could have just really punched somebody because this is four years. Four years of my father having had dementia, four years of standing up for him knowing that I had been the person that had kept him free. And then at a time when he was so ill they sectioned him. So I went in, and the psychiatrist said, 'we've sectioned your father'. And I said, 'but he's not well enough to be moved from here', and he said, 'oh well the consultant says he's medically fit to be moved from the ward'. And then I looked at the GP and I'm going, 'what are you doing here?' Because I've, he had been part of the problem. So then the psychiatrist immediately starts defending the GP and is like, 'oh don't speak to him like that'. Then the social worker says, 'we couldn't get the GP that your father now sees in the practice, and also Dr, this doctor has been seeing your father for a couple of years and knows him well'. I was just so angry. At that moment, and ever since all communication with the social, my dad's psychiatrist had been nonexistent.

The psychiatric ward could not provide all the treatment her father needed and did not have notes...

So I went down, said the same thing to the staff nurse, he said the same thing. I came back, gave my dad some more water, went down the third time and I said, 'My dad needs a doctor and if you do not call one I'm going to go and get one from the general hospital and I'm bringing one back because my father is really ill'. So eventually he called out the doctor. She came in and they started, they thought because of my dad's heart problems they thought he was having a heart attack. Did an ECG, everything looked normal but she's asking me about my dad's medical history and I said, 'but it's all in the notes. I am exhausted, I've had two weeks of hell here and my father has been neglected. Why are you asking me everything?' And she says, 'oh the notes', she said, 'the notes aren't here'. So she said that my dad was dehydrated, that he really needed an intravenous infusion. Because he was on a psychiatric unit he couldn't have one because of health and safety, and so I said, 'well he needs to be moved to a general hospital today then', but she wasn't prepared to call up a consultant who can release somebody, obviously, from a Section. So she said, I said, 'they're not looking after my father'. She said, 'well we can get more fluids into him'. I said, 'but they're incompetent here. This is why he's in this state that he's in now'.

She felt staff had given up on her father and so she intervened (played by an actor).

So basically they were going to let my dad die. They could have covered up all of their neglect. So, -but they weren't feeding him and I know, I think they were just throwing the food away, because the way things were emptied, like the soup thing and the plate, it didn't look like, because, you know. And also, because I've worked in a hospital I know what happens. So I went away for a while thinking I've got to go out for an hour, and I came back at about 5 o'clock and I looked at my, -because I was always looking at my dad's charts and I'm going, his blood pressure is going right down. It was like 75 over something. I'm thinking it should be at least 120, and my dad's all like, and he's lying flat. They were going to just let him die. So I got, -I woke my dad up again and I got him a drink and I said, 'I'll be back in a minute'. I went out and there was this junior doctor on the ward and I said, 'I trained as a nurse. Can you tell me what my dad's haemoglobin is please?' And he said, 7. So I said, 'so when is my dad getting a blood transfusion?' So of course they had to do it. He obviously checked with his boss, and then I stayed there until, -whilst he'd put the blood up and I said, 'Dad', because my dad had kept pulling out the drips. But they weren't, -he was just so unhappy. He was like, it was just like I kept saying, well my dad shouldn't have been back round here. He should never have been moved from this hospital.

Elaine talks about how she felt when the social services wanted to section her father (played by...

So I got my dad's stick, we left the ward, walked along the corridor and I said, 'Dad, I'm taking you home'. I mean, I felt like I don't know, like a sort of fugitive. It's just like, like a fugitive. Like, it's a whole, some real deep rooted ethnic feeling came up, because obviously my ancestors were slaves, as I said earlier. The idea of someone being kept, someone I cared about being put somewhere where I knew it would be detrimental to them was like unacceptable.

But there's this feeling of losing freedom really came up because one of my, an old family friend came to visit my dad once, a couple of times, on the psychiatric unit and I said to him about this whole thing about freedom and he said, 'oh you don't need, you don't need to tell me and we can't really put it into words but we feel it in here'. Because I felt like, well it wasn't a feeling of a threat, it was a threat. It was a threat to my father's wellbeing. He was, his freedom was taken away and my, -I felt like my, my freedom was temporarily because I just got boxed in with this whole thing about, you know when I said about wanting to get my dad out the window. I mean, that's desperation thinking, isn't it, to get away? And so there's this, it's like 'oh these white people are holding us' so I hadn't, I'd never really had it in such an intense, deep sort of way before about a feeling of yes, I'm different. Yes, my father is different, our background's different. And I've read about it, I've read where people from certain ethnic minorities who have been persecuted, you know like Jewish people, Gypsies, when they experience a trauma they can experience it on a much sort of deeper level than people who haven't been persecuted over in their background. But to me it was like, well my father, -mental health, my father didn't have mental capacity so therefore he had less rights and he couldn't speak up for himself so his daughter is trying to, attempting to, and I'm alienating myself minute by minute from the professionals and they weren't actually providing, they weren't providing anybody for me.

She thinks it would be helpful to have someone to mediate when there is conflict between carers...

Someone to help mediate with the doctors and the nurses. Someone to have stepped in to support me to get the medics to acknowledge that my father wasn't fit enough to be moved from the general hospital, to stand up to the Section Order. Because I didn't, -later on my solicitor said, 'Oh why didn't I discharge my father from the section order?' I said, 'because I didn't know how. I didn't know what to do'. So yeah, I needed someone, I think people in this sort of situation, they need somebody independent of the NHS, and the PALS workers are still employed by the NHS and I think they only seem to want to go so far anyway. That was my experience. And the more, you know, I was just really upset. I mean, I can see why I wasn't, why I was, why was I falling out with people but I kept saying to them, 'but this is a hospital. Aren't you used to people having, being in traumatic states like this?' And this is my dad who can't speak up for himself. So it wasn't just about my dad's physical situation, was it?

Elaine felt the psychiatrist questioned her mental health because she was a 'difficult relative' ...

And I went and sat in this little reception area in the corridor because all these nurses and managers all started running and so I felt like oh my God, like, Jorun, I was just traumatised from being attacked, traumatised at seeing my father like this. So then this junior doctor got me some water and he said, 'it's all right, it's just all too much pressure isn't it?' And he was sort of understanding. Then this consultant, who wasn't my dad's consultant came out and he said, 'come and sit in my office a minute and have a couple, I'll just talk two minutes'. So we sat in there and he said, 'oh my dad's got cancer everywhere and he's got it in his lungs'. And I said, 'well I wasn't told it was in his lungs', and he said, 'well it's everywhere'. And then he starts saying to me, 'oh, how many brothers have you got?' And I was going, -what's this got to do with anything? 'Three'. 'What do they do?' 'Nothing', I said. 'They don't help my dad at all'. He said, 'oh, no, I mean what's their profession'. So I told him, and then I figured, he thinks that I need psychiatric care. He thinks that I'm sectionable or something or that I've got some problems, and I said, 'look I know what you're doing. There's nothing wrong with me. I'm traumatised by the NHS, by what my father's been through. He's been on a section, now he's back here'. I said, 'I don't want to talk to you any more'. I said, 'I'm disgusted with this place', and walked out. But you see, you could see one by one, hour after hour I'm just, in their eyes I'm becoming the problem and meanwhile there's this elderly man full of cancer with dementia, 'we might as well let him die because he's got cancer everywhere'. 'He doesn't want his drip in, blah, blah', you know? 'She's written to the MP, there's too much attention on this'.

She was the sole carer but her aunt called from the USA to support her father (played by an actor).

This was really upsetting, it was a really, really exhausting time as well because I was just watching my father fade from, month by month really, so that eventually I couldn't really have a reasonable conversation with him. And I was his sole carer, the only one in the family really who my dad could really rely on. And he has a sister, -well he's got a couple of sisters who live in the States and his sister in Miami was always really supportive and my dad, when she'd phone, my dad was always really strong and she would say, 'Oh he's fine. There isn't anything wrong with him'. There was this sort of connection that they had that my dad seemed to be empowered by, by hearing her voice. But obviously that, my dad used to be upset on the phone [coughs] because they hadn't seen each other for like 59 years.

Gosh, that's a long time.

Yeah. So she'd known, she was 20 and my dad was 19, I think, when they last saw each other.