Bev - Interview 47
More about me...
Bev's mother started developing speech and swallowing difficulties about 18 months ago, in early 2006. Bev was asked to go with her to the appointment at which she was told her diagnosis, and felt it was not sensitively handled. Although her mother had suspected she might have MND, for her daughter it was a complete shock. She was unhappy that there were medical students present, and she felt they were told the diagnosis very bluntly. She felt overwhelmed by the amount of information given to them by the MND care co-ordinator after they had seen the consultant. She would have preferred to go away and let it sink in, and be given a number they could call when they felt ready for more information. They chose to have a second opinion, which took four months to arrange.
In the meantime, the family decided to arrange some trips abroad for their mother while she was still able to enjoy travelling, although Bev found it quite stressful to organise. After returning from a second trip, her mother decided to have a PEG and the woman performing the procedure was excellent. However, other staff were less helpful, and did not seem to listen when they were told that lying flat was distressing for her mother because it made her choke. She was shocked and upset when she was shown what she would need to do to maintain her mother's PEG. The district nurses did not know enough about how to care for someone with a PEG. For Bev, becoming her mother's carer was not only practically demanding but also very emotional to have their roles reversed.
Her mother eventually moved into Bev's home. She felt she and her partner had to coordinate her mother's care, and fight all the time to get the right equipment and services. They tried paid carers, but felt most of the staff who turned up were inexperienced and insensitive. After much discussion with the agency they managed to get two regular carers they were happy with.
Her mother had a day a week respite care at the local hospice. Again, Bev felt some of the staff and volunteers behaved insensitively. She and her partner reluctantly agreed to a week of respite so they could take a holiday, but felt her care during that week was managed very badly and her mother's condition deteriorated significantly. Having previously planned that she would go to the hospice for end-of-life care they decided to manage at home instead, but arranging adequate continuing care was very difficult and distressing. They had a string of agency nurses, district nurses, Marie Curie nurses and care assistants, some of whom were better than others. Her mother was given increasing doses of morphine, which Bev felt made her quite agitated. She died at home of respiratory failure. She, her sister and their partners planned a beautiful and moving funeral service involving a small group of people from different stages of her mother's life.
Being present at her mother's diagnosis was devastating. For the next week she felt as if they...
So we got home and I phoned my sister's husband and told him, and they came up that afternoon. And they spent the week with us, and it was a week - it was a bit like being on a desert island, really. It was a week of just disbelief and tears and anger and just an extraordinary time, really, where none of us wanted to go out, or do anything, you know. It's really hard to see the day is dawning and to see life, actually, when suddenly you've been told that death is the prospect in front of you.
After her mother was diagnosed she took her on holiday with one of her mother's friends. She was...
They waited weeks for some equipment and assessments, but a bath seat arrived which they didn't...
One of the things that seemed to be quite difficult was actually getting in and out of the car, and I asked about swivel seats and things like that for the car, and was told that that wasn't something that they had any information on, really, and that because it didn't come in their budget it wasn't a concern. If I wanted to do something about it there was a conference taking place on travel, and they suggested that I went and spent the day there and it would be very helpful if I could write it up and report back to them. So I didn't go [laughs]. So that was that.
I had been asking for quite some time about things that would help make writing better, or easier, because Mum was getting muscle wasting between her thumb and her first finger and it was getting tricky to hold knives and forks, pens, those kind of things, toothbrushes. And I must've asked about five or six times the occupational therapist what companies were reliable or were there magazines or mail order catalogues that one could look through. I think those probably turned up about nine months into Mum's diagnosis. You know, they were very straightforward and simple things to get hold of. And I just thought how ridiculous, and I was just adapting everything I could adapt in a way that I thought might work, but some things are so much easier if they're actually made for the purpose. So that was a source of immense frustration, really, for me.
So I asked for a wheelchair. I was told that wheelchairs were phenomenally difficult to get hold of. This is actually to get one in the home rather than just for us to hire one. There was a long waiting list. I asked whether motor neurone disease had any kind of priority and they said, 'Well, it depends county to county.' And I thought, 'Well, you must know, you're actually working within this county.' The wheelchair just didn't turn up, and we went to Mum's GP and I said, 'You know, it's a source of frustration for me, I've been waiting for this wheelchair for a long time and although Mum is quite happy to walk down the street to the gallery, it’ll limit the amount of time we can look at pictures because she’s lost the energy on the way.” Her GP made a phone call that minute and by the time I got back here the wheelchair was here. So that said something to me.
Why do you think it had been so difficult?
I think it was just bad - or lack of - administration on behalf of the occupational therapist. I think she just didn’t follow it up, if she even put in the request in a timely fashion. I don’t know the answer to that but it seems extraordinary that your GP can ring and it can arrive that very afternoon.
Organising paid care for her mother was very stressful. They saw a string of different carers,...
So the first girl that turns up is 18 years old, wearing heavy scent, culturally very different, but English. And communication was another one of the things that I had underlined. I think that if somebody has some severe speech problems and difficulty in making themselves understood, and being understood is key, then actually you need somebody who will hook into the sound, or some of the sounds, and be able to associate that with words, and make a pretty good guess at what it is that person is asking for. And no matter how good somebody's English is, if English isn't their first language they're really going to struggle. So this young girl was in fact team leader for the group of people that we had, which seemed somewhat surprising. But she proved to be very good. And then we had a bit of a rough ride. The woman they really wanted to put in here didn't do the kind of hours that we needed, and we had one girl who didn't fasten a hot water bottle properly and it leaked all over the bed, and thank goodness it didn't burn Mum. They all wore such heavy scent, which is extraordinary to me. People who are caring for people who are sick or elderly, you know, not only might those people have breathing difficulties and therefore scent is not the thing to wear, but also you don't really want the smell of your care worker in your house for another three hours after they've left. They're not supposed to become an integral part of your daily living. And this girl, I spoke to her team leader and I just said would she be able to say to her when she comes to feed this back to her, and this girl turned up the following morning, waited until I was off the phone when she'd finished her job, and absolutely let rip at me and said, 'How dare I mention anything to her manager, you know, what was I thinking of, you know she couldn't possibly have not tightened the lid on the hot water bottle'. And I just felt severely under attack and I was appalled that anybody that we were employing could actually be so rude.
We had another girl who just used to take phone calls while she was putting Mum to bed. At one time she just left Mum uncovered on the bed while she sat and chatted to her friend. She used to just sit in the kitchen afterwards, no notion of time. She'd read the newspaper or what have you - she obviously quite liked being here. You couldn't trust them actually, either, to do the things that they were meant to do. Despite them having a list of everything, they would never review the list, which meant if things had changed it was just a question of memory. They didn't tend to communicate with each other, and at one point no-one turned up. Their on-call service out of hours is run in a completely different city, and you can guarantee the message doesn't get through. So it was very stressful having them involved.
And I also felt Mum needed to be treated as a 73 year old woman, not as somebody in their twenties. You don’t wear tops with your breasts coming out over the top, especially when you’re bending down over elderly patients, things like that - they’re just inappropriate, unsuitable. But we did stick with that particular agency after she came back from the hospice, again because I just thought it was better the devil you know, and we managed to get two people consistently, one of whom had a son who had a PEG, and she was a woman in her late forties, very mature, very on the ball, and very nice. And so we were lucky.
And I put that entirely down to actually just speaking to this agency consistently and saying, “This is what we want. Either you provide it, or we don’t use you.” And I think that’s the only way. Most of them of course are not used to working in homes where there are other people present, that’s quite an unusual set up for them, so they really struggle to know how to manage with a family. And I feel desperately sorry for people who have these people coming in who are on their own, because their ability to report back on the misdemeanours is not going to be as good as mine is, and they happen all the time. The level, the standard is quite shocking, really. So they’re a mixed blessing. Tricky.
She felt worried and unprepared for dealing with her mother's PEG. To be feeding the person who...
You didn't get any other training after that,
That was it?
No, that was it. Yeah.
You didn't get any written information on it?
No, I had got hold of a booklet which has information, really, that's good for people who know how to use it, but actually not helpful for somebody who's just picking up on it. It doesn't have any pictures, and actually pictures of course are the easiest thing to follow if one's uncertain. I felt that really they needed somebody like me to write it for them, because they're never going to know what it's like to learn to do it, or what you have to overcome psychologically in order to get round to using it. And I think that's quite difficult. And I think also that there are questions that you have like, 'Well, where do you get the equipment?' and you know, 'How often do you throw away a syringe?', and you know, 'Is it safe just to keep it open in the bathroom?' or you know, 'Could I poison my mother?', or - you know, these questions which may seem really silly or elementary are the things that one really worries about. It's like having a new piece of machinery which actually is going to be crucial to your very existence and you don't know how to turn it on [laughs]. It gives you a huge amount of fear. And I worried enormously about that.
You said that psychologically you had to ',
Can you tell me a bit about that?
Yeah, I think the role of your mother in your life is to kind of nurture you and feed you, and that kind of intimacy is one that's mother to daughter, and suddenly there's a switch which is untimely. It's not as if your mother had lost her faculty or anything like that where your mother's life depends upon your care. And that not just that you're not actually putting food in her mouth, it's through a hole in her stomach and for me the kind of connection between the umbilical cord and the PEG tube, you know, it's there, and that seemed like a very difficult line to cross. I think my mother also had an immense amount of dignity and suddenly I was playing a physical role. And I think again that's quite a tricky line to cross, no matter how close your relationship is. You know, I think there are some things that one wishes, one hopes to keep separate, and that wasn't going to be possible. And I think also for her, again there was this business of, 'I'm not going to be able to manage this myself for long.' So it was having to contemplate again the business of failing.
She felt most communication aids were not suitable for her elderly mother. The speech therapist...
I talked a bit to them about funding, because funding is something I know quite a lot about. And they were very, very unaware of the sources of funding that were available to them. And in fact over the course of the year I passed on quite a lot of funding information to various people and I hope that might be of use.
The other thing they did was they kept downloading software onto Mum's computer. Well, the size of these programmes is absolutely massive and when you've got relatively un-technically minded people downloading software onto your machine, perhaps they don't know that the effect of it is actually to completely mess up your machine. Mum's computer was quite a lifeline to her and being able to go onto the internet and look at art. Again they, basically Mum's computer just gave up, and we ended up getting a new one and I ended up having people out to come and look at it because these programmes were just interfering with all the things that were on there. I just find that so utterly na've.
When she went to the hospice I drew up a kind of - I don't know what you'd call it - but just a kind of sheet of regular things that she might need, a sort of flip chart of things she might need and things she could point to for people that really couldn't attempt to understand her. And I remember showing this to the speech therapist, I was really quite proud of it, it had taken me quite a long time to do, and it was all colour co-ordinated, and she said something really dismissive to me like, 'Oh well, there are better things than this,' or something I thought well, it would've been helpful if you'd offered them. And Mum asked about Makaton charts which were sort of picture charts, which again, if you're a visual and not a verbal person, is actually a really good way to communicate and to communicate quickly. And they were never forthcoming.
Footnote' Makaton is a system of signing and symbol use for people with communication difficulties. See www.makaton.org
Towards the end she was unhappy that her mother was given higher doses of morphine which sent her...
On that Tuesday, we had the GP up and the district nurse up to talk to us about the syringe driver, and Mum asked us to make the decision, and I could see that she was pretty ill. They gave her a dose of morphine on the Tuesday night, and it was calming, it was all right. I think it was Wednesday that [my partner] and Mum and I sat and watched the Gold Cup and looked at hats and had quite a jolly day. We agreed to the syringe driver, which I think was put up on Wednesday, and Mum had always had this hyper-sensitivity to drugs.
They'd been giving her doses of 1.25mg of morphine which is a child's dose almost, it's half the beginning adult dose, and it was enough. When they put up the syringe driver they gave her a 5mg dose. It absolutely blasted her to kingdom come, I mean it was appalling. And she became - it's really hard to describe it unless you've seen it, but she was fazed, really fazed by it, and it was like movement was dreamlike, and yet she was very definitely mentally there. And she was moving her legs trying to knock off some of this sedation, and [my sister] and I stayed up with her all night. We were sleeping in the same room, both of us either end of the sofa, and in a way it was a beautiful night, but so scary, so dreamlike, so very strange. At one point she started this very, very slow breathing and I wondered if she would die, and I hoped she would die. But it was strong, and she didn't die, the next day came. And the morphine wore off, and she had a day of being very alert and very on the ball, very pleasant, and she was - well, the registered nurse thought she was agitated. I didn't, I thought she was just awake. And I thought there was no harm in her being awake because actually that might just give her a better night and the concern was that her agitation might increase. And I have to say it wasn't something I was particularly bothered by. She wasn't in pain, she wasn't having difficulty breathing.
Earlier that evening [my partner] and I had gone out to have a drink, and we were out for about an hour. When I got back the registered nurse had given Mum one of these tiny, tiny doses and it had knocked her off some more but she was okay. I got back and I said to the Marie Curie nurse that I wasn't happy with Mum having top up doses of the morphine over and above what was going through the syringe driver, and that I didn't want her having stat [immediate] doses throughout the night and she said to me, after this dose the registered nurse had given her, she said, 'You know, your mother's fine,' she said, 'She's very calm, she's not anxious.' And I said, 'She's not fine,' and in fact she'd gone into this weird state again. I said, 'She's not, I think she is anxious, I think she is distressed. I think it's too much morphine. She does have this sensitivity to drugs.'
She needed clear information about who would be involved in her mother's care and how they all...
She needed a break but was very unhappy about the quality of care at the hospice. She came home...
I had no information about whether I was supposed to send Mum up with feed and a week's feed, syringes, pink sticks, saliva, fizzy water, tissues - there was nothing. You know, if you go off to do something for a week, or you send your child off to do something for a week, they usually give you a list of what to take. There was absolutely nothing. So we went up there. It was a Monday morning, it's the consultant's round. It's all of a buzz up there. It's the most unsuitable time to be dropping off somebody for respite care.
I said I was there, I said that I wanted to hand over Mum. I'd like to talk to somebody before I left. I had to leave at 11 o'clock. And so we sat, and time went by, and nothing happened. And at ten to eleven I went and grabbed a nurse, and said, 'Look, I'm leaving, I need to give you some information. Please make sure the right person comes and talks to me.' So somebody came who was obviously just trying to leave whatever it was she was just dealing with, and she knelt down on the floor. She had a scrap of A4 paper, folded in four with notes on the back of it, and she said, 'Tell me what I need to know.' I mean, how bad can it get?
I left Mum and I felt utterly distraught, and I didn't feel that they'd taken on board anything I had to say. In fact I got a speeding fine on the way down from the hospice' We came home a day early and I went up to the hospice that night, because I could tell that things weren't right. And I spoke to somebody and I said, 'I'm taking my mother home tomorrow, and I want to meet with somebody, whoever needs to discharge her, and I want to talk through what's gone on this week.'
So I mean that was a really bad experience and Mum went massively downhill from that, and she never recovered from that week at the hospice, and it was a dramatic turn, and it wasn't a turn that should've happened. There were two dramatic things that happened in the year. One, she had a fall, a bad fall, because the neighbours had left the hedge cuttings out on the pavement and she fell and cut her eye and had to have stitches. I have to say A&E were very good at getting her in and out quickly because they could see she couldn't stay around there. And the other thing was the hospice. So I have to say I felt tremendously guilty. I wish we'd never taken that holiday.
She advises other carers to try not to be obsessed with the condition, and to enjoy each day as...
I look back on that now and I think I wish we'd just shut the door on it for as long as we possibly could. And not felt perhaps, I think if other people had been more organised for us, we could've known that actually when we needed it the things we needed were going to be there, rather than feeling we had to grapple with it all along the way.
I think I would certainly take more risks than I took. With going out, with going to do things, I would take today as being 'Well' and not being 'Ill', as it were. You know, tomorrow is always going to actually, with motor neurone disease, get worse. So push to the limits of what is possible today, without fear, because it's too easy to get bound up in the fear of the impossible and the difficult. And be brave. It's the only thing you can be.
Is there anything that particularly helped you through it all?
Well, I think my partner certainly. I could never, ever have done it without him. The strength of my relationship with Mum, and my own absolutely certain knowledge that I was always going to look after her. I knew that from when my father died when I was a teenager, I always knew she would come and live with us. And one or two people 'I think gave me strength' And playing bridge [laughs], which I just started learning to do when Mum was diagnosed, and I have to say that was a saving grace.
She felt vulnerable till her mother's Living Will (ADRT) was finalised. Staff should raise it as a...
It was a really tortuous process. I wasn't clear whether the practice had much experience of Advance Decision. Up until that moment the practice hadn't actually had a relationship with the MND clinic. It was me who co-ordinated getting hold of the draft documents from the MND clinic. In fact I typed them up and e-mailed them to the practice. We were given completely wrong information from the MND clinic about what needed to happen to an Advance Decision. We were told that it had to be signed off by the consultant, which in fact is not true, it has to be signed off by a GP. And I looked at it and it didn't seem to me actually to be very difficult. It seemed to me actually a process that we could have had done and dusted very quickly, and the main bit in it really was, 'If you become unconscious, what level of sustenance would you like? Or would you like just to be left alone to die?' And once somebody explains to you what process the body's actually going through at the point, that you lose consciousness, then actually it's a very clear decision. You know, you don't want to hydrate the body; it's completely the wrong thing to do. So this seemed to take about two weeks to go through that. And it was people coming and people going, and it all felt very tense to me. And then Mum's answers went up to the care co-ordinator, and nothing happened, and having thought that going through this really difficult process one actually would get the signed and sealed document back within twenty four hours, two weeks later I was really getting very irritated about it, and I was also feeling very unprotected. My biggest fear was that if there was a drama and I had to call 999, I had no choice but for Mum to go in an ambulance, and everything that that means - the care is out of control. And it felt very unsafe not having that directive backing us up. I mean, my recommendation is that Advance Decision is talked about actually quite early on, no matter how difficult it is to introduce it early because at least you can do it and forget about it. To do it at a time where death is imminent and thinking through these things is tricky. And not having your carer involved at that time because perhaps you feel it's too sensitive or whatever, leaving it so late that the carer feels unsupported, is not the right thing to be doing. It's something that should just be tackled as a piece of business early on, and then put away, reviewed if necessary at some other stage, but not left until the last minute.
And who should that come from? That initiative, do you think?
I suppose it really depends on who is the closest to you in your treatment, which person in the medical world. For us it was a district nurse who happened to be somebody who had worked in a hospice and so was actually entirely capable of introducing the subject without difficulty. But I think if a relative feels capable of doing it, then they should be helped with some level of medical expertise to talk that through with the relative. Because I think it promotes a decision of where somebody is going to die. And on the business of dying at home, I think it’s interesting. I think that there is a focus towards dying in a hospice. For me the idea that you would move a body at a point where somebody is very ill and take them to some place to be managed, to me that seemed completely inappropriate.
Footnote: A doctor does not need to sign and Advanced decision, but it can be used to show that he or she fully understands the person’s wishes about treatment. It is important to ensure that a copy of the Advanced Decision is placed in the person’s medical records, and that the relevant people know that it is there.