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Emma ' Interview 19

Age at interview: 44
Brief Outline: Emma began caring for her mother when she developed signs of Motor Neurone Disease. By getting end of life care funding and help from live-in carers, Emma was able to keep her mother in her own home until she died.
Background: Emma is a higher level teaching assistant. She has children aged 9 and 11 and is separated from her husband. Ethnic background' White British.

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Emma first noticed there was something wrong with her mother on their annual trip to the Wimbledon tennis tournament when painful knees prevented her from walking up the stairs to their seats. Soon afterwards, Emma accompanied her mother to see the GP where possible arthritis was discussed. Later her mother began to slur her speech and became wobbly when walking, as if drunk. After several more visits to the GP Emma’s mother was sent to the hospital for tests, including a brain scan. Nobody seemed to know what was causing her symptoms. Over time her mother’s mobility became increasingly limited and Emma had to walk her dog for her. Her deterioration was quite rapid and as she lived alone in a remote farmhouse, Emma visited her most days and arranged for friends to visit and for paid domestic help. Her mother had always been an active woman and found it hard to accept that she couldn’t manage. Emma felt scared and found it difficult to cope.

They started seeing a consultant on a weekly basis and after several visits he announced that Emma’s mother had Motor Neurone Disease (MND) and may only have a few weeks to live. She spent a week in a hospice, where they were introduced to a social worker who organised for a live-in carer through an agency. So Emma’s mother went home with the carer and Emma continued to visit most days while working full time and looking after her children. Her mother didn’t want any information about the illness but Emma was able to find out everything she wanted to know from a very supportive specialist nurse. A consultant offered to speak to Emma’s children, and explained in simple language about their grandmother’s illness and answered their questions. Emma took the children to see their grandmother often but wonders whether this had been the right thing to do.

After a while her mother’s condition stabilised for a while, although she could no longer talk and wrote on a special board with a magnetic pen. The carers were very good at understanding her. She had been allocated end of life funding for three months but after six months the Primary Care Trust said it would be withdrawn. However, with the help of the professionals, Emma fought this and won continued funding.

One day Emma’s mother complained of having a cold but Emma wasn’t unduly worried as she had recovered from colds before. But the next day she was worse and they called the paramedics. For the first time ever she seemed to be confused. She wouldn’t settle at bedtime and the carers had a very restless night with her. During the night they called Emma. She arrived moments after her mother had died and was able to prevent the paramedics from resuscitating her, in accordance with her mother’s wishes which had been written down previously.

Over the last few months of her life, Emma’s mother had a lot of carers all from the same agency and, although Emma thought they all did the difficult bits of their work with grace and dignity, she thought they weren’t as well trained as they might have been or well treated by the agency. Emma had not always found the agency helpful. Most of the carers couldn’t drive, so Emma had to do their shopping. They were all young and she sometimes had to look after them as a mother would. Most were from Zimbabwe and one turned out to be working illegally and had to leave. Towards the end of her mother’s life Emma had to get a second live-in carer as it took two to lift her mother after falls. When Emma’s mother died the carers were distraught and were not allowed by the agency to attend the funeral. One has been too upset to continue working as a live-in carer. The other now wants to train for nursing.

Emma found the whole journey very hard but felt she had to be strong for her mother. She continued to work as a teaching assistant throughout the period of caring for her mother. The teachers have supported her son well, who attends the same school. Emma was already having marital problems before her mother’s illness, this continued and so they broke up.

 

 

Emma’s mother wanted her to continue working as that was normal; Emma found that teaching allowed...

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Yes, the impact on work was quite dramatic really I think. Working in an environment with children, in lots of ways was good because the kids don’t know, do they? The kids, I’m just their teacher. I can throw myself into my job, and there were periods of times during the day, I could forget that I had a terminally ill mother. And that was great because I had that release from it. So, on the whole, it was good. What it has impacted on me, I didn’t take any time off work. The only, I had one day off to go to one meeting, but because I finished at three, in lots of ways it gave me time at the end of the day to do the mum bit. I think Mum wanted me to be at work, because that was normal, wasn’t it? We were all doing what we always did. So the encouragement from there was strong to be at work.  

 

Emma felt that one of the good things that care workers did was to ask you to leave the room when...

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So yes, Mum was at home deteriorating, slowing, with one carer living in 24/7 and we got to know the carer very well. She, on the whole, I think she did a really good job. She gave Mum lots of dignity. I think that was one good thing that the carer, all the carers did. They did the good, the bad bits without making a fuss, without, you know, they only told me when there was a big issue that I needed to ring a doctor about or something. They were always very gracious and said, “Okay, you know. You must go out the room now.” We all just went. We knew. So from that point of view, I think without exception really, although I’ve probably known twenty carers now over the last two years, without exception they all did that. They didn’t all do all the good things right, but that’s one good thing they were all taught to do, and I think they all did that brilliantly.  

 

Emma’s mum fought against using a hoist but eventually the care workers could not move her...

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Did you have to make some adaptations to your mum’s home so she could manage at home? I mean was she still doing the stairs for instance?

Very quickly she couldn’t do the stairs, so yeah, almost, almost immediately we put a bed downstairs for her, and she had a grab rail next to the toilet but, you know, my mum wouldn’t use it, even though we put it in. So very quickly Mum just lived in the living room and she used to, in the early stages, be able to walk to the kitchen, because Mum was a heavy smoker and I think her attitude, perhaps quite rightly so, was, “It doesn’t matter anymore.” Because, not that she said that, but because she didn’t, but I think, you know, she was never going to give up her cigarettes at this point in her life. So she used to walk with – they’re called Zimmer frames aren’t they? - but she’d only walk with me standing behind her because she was frightened about falling, because a couple of times she’d fallen and had to call 999, and, obviously, that’s not a good place to be. So because I’m half an hour away from her, they always got there before me, and I obviously got there and picked up the pieces. But for security she’d get me to walk behind her. And again, we’d got into this routine of that’s what we did, but God I hated doing that, because, you know, I was as frightened as she was, thinking that, you know, she was a bigger lady than me and what was I going to do? I couldn’t pick her up. And, in one case, she did fall down, and she was just about strong enough to help me get her up then. But that was in the early days, you know.

So yes, there were some adaptations but not as many as was offered to us, because Mum fought against things like that.

Because she’d done this, she’d plateaued and, occasionally, she’d go down a little bit and would always have this fight, particularly with something like a hoist, you know, and it’s so totally undignified. It’s not what anybody wants to do. So mum fought against it. And the carers, again, you know, all credit to them, they would lift Mum when they shouldn’t have done, and I know they were doing it. They always, you know, I always went out of that room but I knew things were happening and they were just doing the right thing to help my mum, rather than what it said on their bit of paperwork they should be doing. But it got to a point where they said they can’t do this anymore, and we persuaded Mum to have a hoist and things.
 

 

Being a carer means you have to be strong even when you don’t want to be. Emma resented her...

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So anyway, going back to going to the hospice, I remember the day so well, because we got there, I think, I remember pushing her in her wheelchair, and I remember the consultant just saying, you know, within the first five minutes sort of telling us, you know, asking us both how it was. And my mum sat there and said, “It’s all right, it’s all sorted”, you know, “I’m coping”. And I remember me losing the plot completely and running out of the room in tears screaming, “It’s not”, you know, “I can’t do this”, which was horrible because I always want, you know, and I have for three years always supported my mum, you know, two hundred per cent. Being an only child that’s, you know, what you do. But I remember at that point that was a real big issue because I was admitting that I couldn’t do it anymore. And she should have been doing the same but I think, you know, maybe for whatever reason she didn’t. I then remember sitting in two separate rooms, like it was yesterday, for what seemed like ages, while the consultant talked to mum, and then came and talked to me. And we had this agreement that we’d, mum would go home for a few days but then mum had, eventually, agreed to go back to the hospice to spend a few days there to be assessed properly and give me a chance to sort of regroup really.

I was having marital problems with my husband, who wasn’t particularly being supportive. So I was doing most of the visiting by myself really, and interspersed with taking them and working full time, which looking back I still don’t know how I did it. But I think something takes over, like adrenalin or something, because you know you’ve got to.

And the one thing I think you have to be through the whole journey is so blooming strong, when you don’t want to be. That was really hard to do, because you didn’t want to say, “This is shit.” And you couldn’t, because all the medical professionals, you had to fit in with them. You had to give them the information because, you know, my mum couldn’t talk to them, it was me that did it. So that was the hardest thing. It was almost having them all coming at you, you know, and you had to deal with it. There was nowhere else to go. But, looking back on it, they all did a quite a good job but there were times when I didn’t think they were, because maybe I wasn’t either, you know. It was, it was a bad time and it all went wrong. There’s so much else I could tell you and so little, you know, I don’t know.
 

 

Emma regularly took her children to see her mother. She was grateful that the consultant took the...

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The other thing you asked me about was the children, wasn’t it? The children, my nine-year-old now, and to a degree my eleven-year-old are very different children. My, the boy’s a boy, typical boy. My girl’s an academic eleven-year-old. She, they both went, even though neither of them liked it, to see Mum regularly. Latterly, [Name] understood what was happening without me telling her. I even think the nine-year-old did actually. But in the early stages, when it got really hard for them, one thing that did help, and I’d advise other people to do, was Mum’s consultant said, “Can I talk?”, you know, “Do you want me to talk to the children?” And he was brilliant. He gave up his time, I don’t know if he does this very often, and he sat and he explained, in a language that they both understood to the level they understood brilliantly about what was happening to Mum’s brain, and drew pictures. And he did it in, not a light hearted way, but in such a way it wasn’t scary. My daughter was worried that she would get it and I would get it, which is a genuine concern, isn’t it? And, indeed, there is a quarter of people, potentially with MND that is, that could, that is hereditary. Mum, we’re 99 per cent sure she doesn’t have that one because there’s nobody else in the family. But it was, you know, she was able to ask the expert the questions and he was able to explain. And he also told her at the time that there would be no cure in my lifetime, but in their lifetime they might find a breakthrough, perhaps probably not a cure, but a breakthrough maybe to help. And I think she’s taken that on board, because actually, yesterday she did a sponsored silence at school and has raised 150 quid for research. So that’s a practical way she can help, because that’s the way my daughter thinks. So that experience with the consultant was excellent.

Since then, you know, in the months and years, actually, that followed that, I do feel I will never know if I did the right thing in taking them as much as I did. I kind of took them once a week, sometimes twice, you know, birthdays, Christmases and all that. And there were times when I’m sure they didn’t want to go. But I hope they can look back and know why I did it. Sorry, I always cry about the children.
 

 

Emma appealed to a funding panel to prevent her mother’s End of Life funding from being withdrawn...

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And the other big thing that I ought to tell you about is the Primary Care Trust. We got the end of life funding for three months, but when three months became four months, became five months, became six months, became this plateau and nobody knows what’s going on and nobody would put their hand up and say what was going to happen. They wrote a letter and saying they’d reviewed her case and it was going to be withdrawn, the funding. I then decided with the social worker and the, the MND nurse to fight that, because we felt, at the time, that the Primary Care Trust didn’t understand the complexities of MND.

So over a period of some months I got all this information together, which meant Mum having various tests at home. One of them was about her mental capacity, so some, and Mum was very compliant about that. She understood why she, you know, somebody had to come and say to her, “Who’s the prime minister?”, and all that, those type questions. You know, “Put this red brick on top of that”. And, to be fair, Mum was really good.

So we got a report saying, you know, “She has got mental capacity”, but all the complexities of what, what MND was, occasionally, Mum used to throw things at me, when she had the ability to. In the latter days she couldn’t. But if she got frustrated and couldn’t eat something, it was generally me who it was thrown at, sometimes the carer if I wasn’t there.


But details like that, all the details had to be put together. And we went to this meeting, the three of us, to the Primary Care Trust. So I sat in front of a panel of five people. And the worst thing for me was it was kind of me fighting them for Mum. So, all the questions were aimed at me. Obviously, I had huge back up from the social worker and the specialist, but that, and it was very unusual what I was doing, apparently. Obviously most people die, so it’s not an issue. And if they don’t, I got the impression that not many people, people just say, “Yeah. Okay.”

So I felt like I was in a place where nobody was, had been before. And it, and it was just like a big job interview. You know, I felt like I was fighting to control ICI at the time. And again, it was a very emotional thing because I had to explain that my mum couldn’t pick up a mug, for example, you know. I had to give them examples. And I was so frustrated because I felt like saying to them, “Just come and meet her, because you meet my mum for five minutes, you don’t need to talk to me anymore”.

But people with MND, you don’t see them. And that’s an overwhelming thing. People with cancer walk around. You see them, you... People with MND, you don’t see. They don’t go out. So we don’t meet them. They, these ladies admitted that they didn’t, had never seen anybody. So I remember that meeting lasting like two hours going through every different, there’s all these point, probably forty points, and you had to prove where Mum was on the scale. And there were very complex questions, medical questions that I had to understand. Okay, I’d got back-up but I had to understand what I was talking about.

I can’t believe I came out of there and I won. And Mum’s fund, this was last June actually, because Mum’s funding does run until middle of June this year. And it was a huge deal, and Mum was delighted, and we were all delighted.
 

 

Emma remembers asking the paramedics if they had found her mother’s ‘message in a bottle’ which...

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And then everything happened so quickly it all became a blur really. I remember getting the kids ready and did all those things. Dropped them off at my friend in [Town] and then the carer, there was always one carer I talked to more than the other because I, I had a strong relationship with her. Not that there was anything wrong with the other one, but it was just that. She said, “You’ve got to come, you know. I’m not happy with your mum’s breathing”. And at that point I knew. I think I knew at that point everything changed in my head.

Luckily, I was in [Town], which is only, I was about three or four miles away. And as I got there, and she said she’d called the ambulance, and she was very calm, she was great. As I got there, two ambulances were there and I thought, “Okay. Two ambulances don’t go, normally.” And it was like, even now I can describe it as it was like this out of body experience where I ran into the house, and so did this paramedic guy, and did he, all he said was, “Do you know why we’re here?” And I remember that very clearly. And I just said, “Yes”. And both carers were in the kitchen crying uncontrollably and, you know, nobody had to say anything to me anymore. And Mum had, we’d had this message in a bottle, which basically said, “I’m not to be resuscitated” and to call me.

And I just, I remember, I remember screaming, and I’m not sure why, [laughs] because you do. I remember saying, I don’t know, something about, have, have they got it, or whatever and I think the answer was yes. I don’t remember.

The next bit I’ve only ever, I think I can take it, I’ve only ever told my counsellor, because I didn’t like it. I’ll try and tell you though. Mum, they’d put Mum on the floor because she was on this wiggly air bed thing, and I remember screaming saying, “You can’t do that.” Because, you know, none of us want to be put on the floor, do we? And I said, you know, “You can’t resuscitate her.” And I, in my mind now, I threw this thing at them. I don’t think I did, because I think they’d already got it, but your mind plays tricks on it, doesn’t it? And I remember there being three women, younger than me, and this bloke, who thankfully was quite good, this paramedic. He said, “No, no, no. We’re not going to.” I remember saying, “Why is she on the floor?” And I could see Mum was dead. And I kept saying, “Don’t, just don’t, just get her off the floor, put her in bed.” And I just remember screaming and screaming and screaming. That’s all I did. And eventually, you know, eventually, it wasn’t eventually, was it? It was probably a second or two, they said, “Yes.” She said, “Yes, I’ll do it for you.”
 

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