That surgery was extremely successful and stopped the tremor for about five years, five or six years but then slowly things started to happen again. Other symptoms that I hadn’t originally associated with the Parkinson’s started to be noticeable such as the rigidity of my face when I’m off, and I’m slightly off now but having to take medication I should be right in a few minutes. But the rigidity in my face makes my face look as though it has no expression and this caused me a lot of problems because I felt as though I looked as though I was being snooty or disinterested in people when they were talking to me and eventually I found out that it was something that was associated with Parkinson’s.

So I had the shakes and the rigidity in the face and then I started getting stiffness in my limbs as well and gradually my concentration I noticed started to wane when I was off. During this time I was working as a manager in the Health Service and I have had to stop working as a manager as it greatly affected my career over the years but I still work, I work for 20 hours a week as a receptionist in a local hospital and then of that it’s a great source of inspiration to me.

I get involved with all sorts of things with the health workers who involve me in the team a lot and support me a lot at work and also I get to talk to a lot of patients and they’re able to sort of feel an empathy with myself, for the problems that I have and the talent that we all have. But it’s concentration that really made it impossible for me to work as a manager; I could no longer chair meetings and things like that.

But I’ve always wanted my life at home to be kept completely separate from work and also from the health problems that I had. I like to keep the focus on life at home to be having fun and being a family and enjoying ourselves and I didn’t want the boys to grow up thinking of Mum as being disabled or in any way not a mum so I’ve always joined in everything that I possibly can and they don’t think of me as having a disability at all. They think of me as Mum who can do this and do that and they expect me to do things like sponsored walks and involve me in all sorts of physical things. They both love sport, both heavily involved with rugby. Rugby is my eldest son’s career, he’s a development worker and so they both expect me to do all sorts of things. And so far I’ve always met, I’ve had (inaudible) and that makes them feel very proud. Sometimes I think they have been criticised for not giving me space for my shakes and rigidity and so on but it’s really been a great incentive for me to keep going against all odds. They’re a wonderful source of inspiration to me.

I’m losing my thread now.

So, the start of Parkinson’s, as I say was when I had the cerebral incident, then I had stereotactic surgery and the symptoms came on further and I was diagnosed in the mid 90s. when I was diagnosed it wasn’t a great shock to me, because I more or less guessed that these other symptoms had meant that things had progressed and gradually I just came to accept that it was some form of Parkinson’s anyway. I had great support from my consultant who was a pioneer in Parkinson’s treatment. He’s continually suggesting different forms of medication or therapies for me to use. Different ideas for me to try.

Over the 23 years that I’ve been involved with him he’s given me great support and introduced me to other professionals who are expert; like the PD nurse who luckily for me is absolutely excellent and I tend to dip into services when I need them and then just maybe have no contact for months. And when I need help again they’re always there for me. I self refer and I find it’s a great system that I always know there’s a safety net there for me to turn to people if I need it; but if I don’t then they let me just get on with my life which is the way I like to run it. so in the normal course of events I, …. do you mind if we just.

No, we’ll stop.

But I just have to plan things out and that’s really what it’s meant in my life that I have to be a bit sort of over enthusiastic on the planning stages and get everything off to a T then things are fine. But I like doing that anyway so that’s fine. Basically I think what I’m saying is that Parkinson’s has never been the focus of my life; doing what I want to do and following my interests and following the boys and things like that have been the focus. Parkinson’s has had to fit in with that and I think that that’s perhaps the whole approach to the illness or the condition that I have is that I try to put it to the back of my mind and live life to the full.

My, the teams that have been involved with me have always helped me with that and suggested all sorts of things and ways of coping. My physios have told me about mirroring and what to do when I freeze and queuing and all this sort of thing which has been really helpful and exercise and following through; stretching exercises as often as possible and that’s really helped me moving and does help me a great deal.

I also take a lot of medication that has gradually built up from being very little medication to a lot of medication that I now take on a three hourly regime throughout the day. But I’ve been taught by the PD nurse and the other members of the team how to take it on time and to keep as long as possible moving and functioning normally. I’m not aware of looking any different or moving any differently when I’m on a good day; on a bad day I shake a lot but I can always do what I plan to do. Whenever I’ve had a problem and thought ‘right this is it, I’m going to have to change my lifestyle’ or whatever, my consultant and the team have always come up with a way round things that, either by altering medication or exercise or whatever so I have a great deal of faith in them. Changing the cocktail of the medication has helped in that I find that as long as I stick exactly to it, on the times, that you know generally I’m fine.

There’s been some problems when I’ve been in hospital and most of the time I’ve been in hospital for problems with my Parkinson’s so I’ve been on a neuro ward and when I’ve been in a neuro ward there’s been problems in getting my medication on time which I found really quite strange on a ward where there are meant to be experts in caring for people with Parkinson’s, but it’s surprising how little training or understanding that there is or was done in Parkinson’s.

More recently I’ve had a lot of input from social services and the health team who have together come up with a direct payments package where I buy in care, where I buy in care that I need when I feel I need it and that has worked a lot better than me being admitted to a neuro ward. I’m not being critical of the individual members of staff who have been available to me on the ward, they’ve all been very kind and professional people but they haven’t had intense training in Parkinson’s and how you MUST have your medication on time and when I don’t have it on time I go off and become really uncomfortable. And I’ve felt as though I’ve been a nuisance sometimes and I’ve had to ring again and say ‘you know I really do need my medication’ and so now when I go into hospital which I haven’t been to a neuro ward for over two years now since I’ve had the direct payments to buy in my care when I need it, I find that the staff are a lot better trained and know and understand why you need to self medicate or have your medication on time.

Self medication has been on the option on the couple of occasions when I’ve been to hospital and that works very well for me but I do understand the problems on the ward when there’s patients may have access to your medication, you’ve got to be very careful. So you lock it away all the time and so on, and you are responsible so I do understand the problems with implementing the schemes, the self medication but I think that the direct payment scheme has helped keep me out of hospital because I can ring up and get care and support whenever I need it and not on a routine basis, so that’s what I do and it works well for me.

I have a worker that I know, whom I’m pleased and comfortable to have in my home, she knows me very well, she knows exactly what to do when I’m feeling quite poorly and because of her we’ve been able to nip things in the bud. I just ring for her to come in and she comes and sorts me out and then goes and I get on with life for another few weeks. So it’s, that’s really helpful.

But recently I had an episode in hospital for something that wasn’t associated with my Parkinson’s and I asked whether I could self medicate when I first went in and I was really surprised when I was told that ‘yes I could do’ and they were very supportive, they were great on the general surgical ward and I was, there was no problems at all, those first days that I went in but then I unfortunately had complications and wasn’t able to self medicate because I was in the high dependency unit and had, had to have a transfusion and had drips and all sorts of things plus other medication and my Parkinson’s couldn’t be kept under control for a while ‘cos it couldn’t be given intravenously and I did definitely have real problems because I kept moving and became restless and so on and I had to be given medication that was not my usual medication and I had to take a (inaudible) that’s dispersible rather than the usual medication cocktail that I take and so I did become quite uncomfortable and so on until they refined the Parkinson’s medication. But the hospital team worked very closely with the PD nurse and my consultant neurologist and they were able to really help me so I was very lucky that there was such supportive staff who would listen to what I was saying or needed or what was uncomfortable and together we worked out a solution to it but that was only because of the interest of the staff who were nursing and their support.

But I think it’s very important where possible for people who have Parkinson’s Disease to self medicate when they are in hospital; it means that there’s less pressure on the staff and that the patient can regulate how they’re feeling and keep on top of it and keep them self comfortable. A lot of the time I’ve seen people with Parkinson’s on the wards who’ve not been listened to, not purposely ignored but people don’t realise because they’re softly spoken or their voice is weak then they don’t hear necessarily what somebody’s trying to say to them. So I think I would just encourage people to listen as much as they can to people with Parkinson’s who usually know their own condition, the way they’re the feeling best and to go along with that wherever they can.

I think that’s why as I say every individual that I’ve come across has always wanted to know more and to talk about it and to try and communicate what their needs are and so that’s what I always try to do. Sometimes people think that you’re being stroppy but it’s not, it’s trying to work out a solution that will work within the ward as well. My time in a hospital has always been very positive, all of the staff that I’ve ever been involved with me have been really wanting to find a solution for whatever problem I’ve had and I think as, as long as I can I’ll try and develop good relationships with them, because I’ve never come across anybody who hasn’t try to do their best for me or tried to work things out with me.

I think it’s really important for people with Parkinson’s to help themselves as well. I’ve found that people with Parkinson’s seem to be hesitant in coming forward and being assertive and saying what they’re wanting and following that through and that’s sometimes created a problem for themselves. I always believe in trying to communicate with people even if it’s difficult and difficult sometimes in terms of energy as well to actually sit down when you’re feeling dreadful and trying to put in your wishes or what you want to have done in to words is really difficult sometimes when you’re feeling poorly or off. But it’s so important to communicate and I think that we’ve all got to take responsibility to doing and I would just ask that professionals listen to what we say and I’ve always found that they have done and I think that’s basically my story so far.

I’ve got a deep brain stimulator that’s fitted, I had one put in at ……… about ten years ago and then one was put in ………. about five or six years ago and that’s helped me a great deal to keep my mobility and the staff that I came across on both occasions worked tirelessly to get the brain stimulator working correctly and I just found everybody so helpful and just little tips that the staff were able to give me helped me so much in life’s, when you’re at home and out and about.

I think that you know, staff don’t realise how much one little tip helps so much. I mean the things like stepping over a line when you freeze is something that I use so much especially when I’m shopping and I suddenly stop and (inaudible) happened before, I was told that tip by a physio, it was really a problem to me, freezing and I was avoiding shopping as much as I could because of the problems it presented. Whereas now I can get going again really quickly so that’s very helpful.

I don’t consider that I’ll deteriorate, I don’t think of the negative aspects of it, I just think of today and as I say, so far, so good, nothing’s stopped me so far. Just made me do things a bit slower and that’s how I think of the future really so I think positively and I’ll carry on doing all the things I do; maybe a bit slower in ten years time but that’s it.

Thank you very much indeed

That’s alright.

Yes Sandra, thank you, I was diagnosed with Wegener’s granulomatosis back in 2002 and my experiences of the health care at that time were very positive. The only blip was I do recall the GP telling me to prepare for something sinister. I was having problems with the lungs and breathing and coughing and a lot of other complications but I do remember before I was actually diagnosed the GP did say ‘look, this x-ray is looking serious, prepare yourself for something sinister’ and looking back that was a little bit jumping the gun I feel now. It did put the fear into me from that, really from the word go and yet when I eventually saw the consultant it was quick actually it was a fortnight appointment, it was obvious then to him that cancer wasn’t at the top of his list

So could you just say what the actual condition means?

Yes it’s called Wegener’s granulomatosis which is named after a German doctor who came up with this idea of granulomas. So basically I have too much immunity and that works in on the body and attacks organs, so it’s a multisystem illness. In my case it was limited Wegener’s which means that the lungs and the nasal cavities were affected. In other patients, it could be the kidneys and that’s called general Wegener’s granulomatosis. But it was quite a long diagnosis period. Well I’m saying long – it was three months. But when I do look at the complications of the illness and how difficult it was to detect I think really the consultant did extremely well. I’ve heard since of patients who’ve taken a year to be diagnosed with this illness – so it was quick. He had a very good team. I was allocated a Macmillan nurse, I soon built up relationships with the phlebotomist with taking bloods, at that time it was on a weekly basis and I was seeing the pharmacist, all these health contacts, the radiographer. It was a very good team and I think that was important because I needed the confidence to wade through all the tests that were ahead of me. Some were more invasive than others and in some cases it was bloods, but it was also x-rays and biopsies and the more invasive it was, I felt I had no fear really going into these procedures but the confidence I had in the specialist did waylay a lot of my fears and worries

And it sounds like the fact that everyone was working as a team

Yes, it was collaboration and very good dialogue between primary and secondary care. The GP was always well up to speed with what was happening. And when I needed a referral into the mental health side (my mother died in the middle of my having the illness), which I’ll talk about a little bit later on, so I did need a referral for treatment of depression and the Macmillan nurse was a key player. The care spanned across different hospital sites, probably 15 mile apart so I think, when that happens, the collaboration’s really important. And I have to say that the specialist didn’t hesitate in referring me to a clinical psychologist for some psychotherapy. And that was a turning point for me as well. Having that care of both the physical illness and the mental health side, which was depression, brought about by bereavement but also brought about by the physical illness in that I had to come to terms with suddenly being quite an ill person after always being very healthy. So that’s basically what happened.

It sounds like you know what worked well for you then was the fact that people were anticipating what you needed, along with you, rather than you being sort of left? Yeah?

Yes, I think that’s right. the specialist he was the one who did spot that I was very, very down and it wasn’t doing me any favours with the physical illness. So it was immediate, he just said ‘yes, a referral’ and I got that appointment quite quickly with the clinical psychologist and she was very pivotal in my journey of recovery and building a new life, living on my own all of a sudden and getting back into the workplace. So she was very, very important as was the Macmillan nurse. There was a lot of reassurance coming from both Macmillan nurses, there were two and I got to know both of them. But they were very good from a reassurance point of view and occasions when I needed to ring up. And it was obviously harder to access the specialist although I have to say his PA was wonderful when I did need to find out perhaps the result of a blood test or the result of a biopsy. But yes, the Macmillan nurse was really a key player in the treatment. And to jump now to what happened with my mother, it was incredible really that we both fell ill at exactly the same time

So how long had you been ill before your Mam was ill?

Well it might have been one of these situations that because I was caring for my mother for quite a long time, and I do wonder looking back if that put me in jeopardy really. But I was working full time and I was looking after me mother and I could feel meself really going downhill but just assumed it was stress and feeling a bit off. And the symptoms of my illness were so gradual at first and then all of a sudden there was quite a severe attack. But I do wonder quite, you know, what the carer role that I was undertaking, what part that took in me becoming ill meself and I perhaps should have asked for more support; contacted social services and got more help. It might have well been available but there was an independent streak to me that I was trying to handle things within the family really.
So my mother had arthritis and a lot of back pain and in hindsight I think that masked the real problem that she did have which was eventually diagnosed as cancer. It was Non Hodgkin’s Lymphoma of the spinal cord. And I think I had put too much faith into some of the tests that me mother had and a lot of that might have been due to the way my illness had progressed and that when I did have x-rays, there was a result. When my mother had an x-ray it was clear, apart from the arthritis but, there was nothing showed up on that x-ray and I think I did place an awful lot of faith in that test. And I think my mother did as well. There was a sigh of relief ‘oh there’s nothing there. The x-ray’s clear’. Little did we know at the time that we should have pressed for a scan because my mother’s pain did get worse and worse and she started to be quite down and didn’t want visitors any more. Well she’d always been very sociable, so there were signs that she was more poorly than perhaps we all knew. But of course it’s seeing those signs for what they are. It’s easy to look back and recognise now but, at the time, we were very much fighting fires in that I was trying to get on top of my illness. We were both having appointments, our files were getting thicker and thicker all the time and it was just getting so complicated. But our two illnesses did impact on each other I feel, looking back. It came to crisis point when one night my mother got up to go to bed, tried to get up and, just her legs had completely gone and she said ‘I’ve got no feeling’. We rang the doctor and they said they would come out the next morning which they did and we did wonder was this a stroke or something of that nature. We just didn’t, we didn’t link the back pain with the loss of use of the legs really at that point. And I almost had to carry her to bed that night and in the middle of the night I had to carry her to the toilet. It was obvious something really was serious. And the next day the GP did an immediate referral so my mother was admitted straight away and we saw a number of specialists that day; there was a lot of waiting round you know in the department but it was obvious they were going to keep her in really and do more tests. There were more x-rays and there was the scan which immediately revealed a tumour and we then had the journey
of moving from one hospital to the other. I think there was more investigating operation and then a referral to a bigger hospital a few miles away as she ended up in intensive care and that the actual care of her at that point, it was wonderful really. I remember some Philippino nurses, the care was just terrific you know and she got settled at that hospital and then we were to move again to a bigger hospital because by that time it was obvious she was going to need the oncology side. So, still we were very concerned but it wasn’t sort of really ringing alarm bells yet; when we got to the oncology, she started having radiotherapy and you did get the feeling that that was quite intensive, just the marks on her body when I went to visit her. I thought ‘oh this seems quite an intense treatment in the radiotherapy’. No one was really explaining.

So was she still in hospital at that point?

Yes. Yes, she never, ever came home after that. I think it was the third hospital, there was a fourth one to talk about a little bit later on, but the main treatment was at the third hospital and the oncology. She spoke extremely well of the palliative care specialist. I never got to meet him but I can only say that she did really bond with this man and she trusted him and there didn’t seem to be any problem. And the clinical nursing was excellent. She was kept clean and supervised and you know I didn’t have any problem. My big hurdle was communication. I just couldn’t get any answers at all as to what the real diagnosis was and what the prognosis was. You know were we to expect the worst? I just really didn’t know and the more I tried to speak to someone, it just seemed to completely elude me. And I knew there would be a Macmillan nurse attached to the ward, you know, a big cancer ward, but it was so busy it just seemed to be working flat out. It was Christmas time and that might be another factor that just, things that perhaps should have been in place, weren’t. So I did speak to the Macmillan nurse on one occasion, but I have to say that was prompted by my own Macmillan nurse at one appointment I turned up very, very distressed and she stepped in and she said ‘look, I’ll ring this other hospital, I will try and speak direct with the Macmillan nurse and I’ll try and get you an appointment’. So eventually that happened. But she did not really know an awful lot of history about me mam; I’d never met her before obviously and I felt she didn’t quite grasp the seriousness of our situation. But she listened and I still kept beavering away, trying to get answers. I think it was,

What kind of answers did you want? What kind of information?

I just wanted to know exactly what was happening; why was my mother having stomach and bowel problems when it was a tumour in the spinal cord. I didn’t understand that. I didn’t understand what was going on in her head with the mental health side, with hallucinations that could be delusional as well and it was quite distressing

So some explanation would have helped?

Yeah, yeah. And I didn’t know either what treatment options, if any, you know. And my mum did mention chemotherapy. She said ‘well I think I’m going to have chemotherapy’ but again it was very difficult to try and get the information

So it sounds like the information that was going to your mother wasn’t getting to you and because of what was happening to her, psychologically, you know you in a way, by rights, possibly should have been given that information?

I think I definitely should have because you couldn’t rely on what my mother was saying. You know the confusion. At times, I was asking other patients at the bed next door, and, you know ‘what’s happening?’

Just trying to seek information, yeah

And it was distressing. She had to have a hoist you know to take her from bed to toilet. It was very distressing the whole experience of it. One day, I mean the thing I was expecting was the specialist to call me in, and that never happened! I just thought well you know me mum seems to be getting more and more ill, surely he’ll ask to see me

Yeah, eventually

But it just wasn’t that way at all. It was me pushing. And they arranged a meeting with the sister and a doctor and meself. So we went into this room. I did know the sister by that time quite well and there was a junior doctor, very young, junior doctor but one I hadn’t met before. And she started to explain that the cancer hadn’t spread but the general health of my mother, she did have a lot of other complex problems with kidney and hypertension, diabetes, there was a whole host of you know, illnesses there. What she said was ‘well no the cancer hasn’t spread, but you must realise that what’s going on in your mother’s body – the effects are as if the cancer had spread’. So as I understood, blood supplies weren’t getting to bowel and

Quite low

Yes. So, they weren’t sure how long. They thought perhaps weeks. But then, just out of the blue there was a suggestion that my mother go to the community hospital which was very local to where I lived and at the time I did think ‘well, yeah, that might be a solution’. So this was the run up to Christmas and, when we got to the community hospital, our own GP was there so he welcomed us. That was fine. There were a lot of local staff as well who we knew so it was much more personal and it was very, very caring. But the nursing provided in the community hospital just wasn’t geared up for dealing with the very acute symptoms like me mother had. And on Boxing Day you could see there were real problems there. They managed to get her into a bath to make her a bit more comfortable. She was still having visitors at this point. Still sitting up and chatting but poorly. And I would go and I would find medication in the blankets, you know in the bed. I think that medication would be for pain relief. But I think as well it coincided exactly with my return to work. I’d been off for nine months but there was a little bit of pressure from my occupational health to get me back to work on a phased return. Just two or three days, so I was actually at work between Christmas and New Year when I got a call to say that the community hospital just couldn’t manage, she would have to go back to the oncology department of the bigger town hospital. And yes, they did that straight away but it was quite distressing, yet another move when her pain was increasing all the time. We got back and I have to say initially she was relieved, she did say ‘ah, I’m back, I’m pleased to see those nurses’. Whether those nurses were in fact pleased to see her I’m not sure – because I did feel with it being Christmas there was sort of an impetus to get beds empty and you know, whoever could go home, even for a weekend or whatever, you know to leave the hospital so and that’s when things really started to go wrong. I mean they’d already gone wrong with the misdiagnosis in the first place, but they really went wrong in palliative care. From a clinical point of view, I have to say it was efficient and everything was above board, everything, I could see they were writing down the treatment of the pain relief and my mother had always resisted taking morphine, I think at one point when she was at home I’d perhaps said to the GP or … ‘is this not a time now’ and me mother jumped down me throat, she really, I think there were a lot of myths from her old nursing days about the treatment of morphine. But at this stage when we did get
into palliative care, that’s what the treatment was and it was difficult to know when she was in pain, when she was agitated and when she was distressed and you couldn’t really differentiate. I do recall her coming round at one point and saying ‘Mum are you in pain?’ and she did manage to nod. But I think that was the only time that she was able to give me any signal as to whether it was pain or the other symptoms; breathlessness as well. And one of the worst things that happened was when my mother was put in a side room, right next to the nurse’s station. And as I passed one day, they probably didn’t even know I was there, they were all busy, but it was just before my mother sort of went into that semi-conscious state so there were incontinence problems, she was having to you know bleep them for support and I overhead one of the male nurses say ‘oh it’s …. again’ and it was if he was complaining about her, you know that he was sick of her, you know, sick of her calling and I did think ‘well, yes I’ve heard that’ but it could have been me mam, me mum could have heard it just the same and it was an unnecessary, careless, throwaway remark, possibly the way nurses do talk amongst themselves but absolutely essential that they don’t do it within earshot of patients and families. I never said anything, I don’t think I could have really, I just was sort of operating on a day to day basis and to have tackled that issue and said ‘look, that was wrong, please don’t react like that or make any remarks’ it would have helped someone else further down the line, who might, you know might happen to and he was quite judgemental this one nurse, I remember him commenting on the time I was spending there and it was a really difficult time. I just hoped that everybody

So it was a sensitive time?

It was a very sensitive time but I when I did have the meeting with the sister and the junior doctor she did say to me ‘well the time that you can spend with your mam, looking at the sort of pain and distress she has; that’s going to be vital and it’s going to be an enormous help to us in monitoring’. And looking back, I think that placed quite a burden on me because I did feel as if I should be there all the time, 24 hours. I just had no way of knowing when she was going to come round and that I was going to have shoot away and try and get some injection or. She was on a syringe driver at that time as well and there were perhaps times when you weren’t sure whether to run and get help or just wait until she lost consciousness again. And I felt I could have done with a little bit more help and information on that because the question in my mind was ‘do I ask the nurse to give her an injection which might disturb her further or do I just let her go back into a sleep?’ Because nine times out of ten, by the time you’d rang for that injection…

Is the difficulty about the responsibility that you had? That you felt that you’d been given?

Yes I mean I did have that responsibility because I’d been a carer so long anyway and it was hard to let go of that role. But I did feel they’d put a little, a little bit of pressure on. They offered me a bed there, I can remember that but I ended up booking into ……….. so that I had a base. I was ringing home to friends and family but I was completely alone. The snow was thick, it was icy, the hospital was about 20 miles away and I was completely on my own at that point. But I do remember contacting my own specialist. I might have even had an appointment, a routine monitoring appointment so I did see him at this time. And I said, ‘I’ve got no background of this at all, I don’t know what to do? Should I be staying 24 hours?’ and he said ‘no, you can’t do that’. He said ‘the only way a family can manage that is if there’s siblings of four

Ye, if there’s more than one of you

And you take a six hour slot, and you can cover the 24 hours. But because me mum was so frail, I did think the end would be quick. I did miss out one thing, we did have our ‘I am dying’ moment which I don’t think everybody has and in some cases perhaps the patient doesn’t know. But there was one point where my mother did say ‘I think I’m dying’. And I had to kind of give her some hope although deep down I knew there wasn’t. There was part of her that grieved for herself and there didn’t seem to be any way of tackling that. You know I really didn’t know whether that came under the umbrella of depression or what it was but there didn’t seem to be any kind of support in that

For your mam you mean? For you mam realising it was the end? You didn’t feel that that was handled or kind of, you didn’t see what you expected to see to help her deal with it?

No, I still don’t know what the answer is for that and I do raise it in some of the patient circles I work in now. So that’s still something that I do think about

So in a way she had the fear and all the feelings and it was you to confide in?

Yeah but she also had the fear of leaving me on me own. Anyway, that’s how the palliative care spanned out and it went on, in my mind it went on a long time. It was nine days. And every day you went in you kept thinking ‘this will be it’ and it just kept being prolonged really

I think that’s the difficult part isn’t it? Of that, the end of that journey is that you can’t say exactly what day it’s going to be? And that is a difficult one.

No. I did need spiritual support as well and with it being Christmas, the hospital chaplain, you know the priest, vicar, there was no one there. And people did say to me ‘oh your mum will wait ‘til the vicar comes’. Eventually he did arrive and he was a great support he was.

So that, do you think that his role was about that containment – and about your mum’s fears and feelings?

Well, I felt that was more the counselling side of things and I didn’t know who took that role and I still don’t. I don’t know whether a good Macmillan nurse might you know? I don’t know

Yeah, do you think the priest offered that, in the end?

To me, but me mum was unconscious at that point, she never got

Oh right. So she never got that comfort?

No she didn’t she didn’t but he was a comfort to me and he also started me in the planning stage

Yeah

So

The planning?

Yeah the funeral, yeah, yeah. By the time I left that hospital I knew the readings I was going to have for me mam and the hymns which, I knew what she wanted. I did have a really good idea what she wanted. But it seems awful to be planning that while she was still alive but I had to focus on something and he did give me that focus. Afterwards, I went through the practicalities and to friends and family it looked as if I was fine. I went to the GP and I started asking one or two questions about the misdiagnosis and I had suspected it was all about masking of symptoms, that the pain from the arthritis had masked the cancer pain. And I was perhaps naive in that I’d always thought there were safety nets in place that if, you know if doctors were collaborating, you know discussing a case that there would perhaps be a call for immediate referral when somebody was in really severe pain. So I didn’t really get any reassurances there. The GP said it was very unusual to contract that particular cancer at my mother’s age and that she’d been very unlucky. He then said ‘oh this might be a case we can talk about at our team meeting’.

Right

And I felt that was said with a little bit of flippancy, you know, as if ‘oh well we can make a study of this in the hope that we don’t do it next time’ but I was left with feelings that I’d let me mum down. In that I’d never pressed for a scan when she was initially ill and I should have done. And that the other guilt was that I hadn’t been there all the time when, you know when it did get into end of life, I wasn’t there all the time because I didn’t feel I could sit with her. So there was guilt associated with that. And the memories are as vivid today as they were then and I can perhaps recall most of the detail of it and I’m trying to do that, something about that, to give something to other patients in whatever way I can from a patient safety perspective and it’s led me into the world of patient involvement.

Yeah I’m not afraid of dying, I’m actually scared of the pain because I know the pain’s bad now and if it didn’t get controlled and like, like I say I am on a lot of medication, and nothing at the minute seems to be helping. I know it’s got to get worse as well because of the type of cancer I’ve got as well. I mean when I had the intense radiotherapy last year it was to kill that lymph node and it still didn’t kill it; it was still causing all these problems. I mean I’ve got it in black and white in writing I mean I got it one of the doctors who wrote it, one of the other doctors that sent me a copy and it’s just sad, it really is. I mean you’ve got your family there yeah but you’re trying to, I don’t know, you don’t want them upset because that upsets you more so, and you find out who your family and your friends are, you know they just (inaudible) anyway but that’s why it’s so important to have like people like yourself or the Macmillan and whoever’s involved in your care, to sit and listen to you. You know and like I say about going in hospitals, the nurses should be made to sit and listen to the patient but if they don’t do that they’re obviously not in the job for the care are they? It’s really important to have somebody there, really it’s

That sounds like one of the most important things that you want people to know, that you know, about having time to listen to what you’re saying and in a way it might not have to be a long space of time but it’s just feeling that you’re heard

Yeah, that’s it, yeah. I’m glad like they’ve got, they’re doing the thing for young girls now, they have the chance of the injection to prevent them from getting cervical cancer. But I mean, I am a hypocrite to sit here and say you know, ‘please go and get a smear, get this done’ because I was one of them girls who said ‘oh I’m not going to get that done, what you don’t know won’t hurt you’ and I tell you what, it does hurt, it really does hurt. So you know, I would advise people to get it done. The main thing, it wasn’t the results that frightened me, it was because people say they’re going to use a clamp to open you up and that hurts and I was thinking ‘oh no, I can’t bear the thought of anybody’ not even the embarrassment but it was just because they said it hurts, but it just put me off and there was one time I did go, I’d been watching Coronation Street and Alma had died of cervical cancer on it, and I turned up and then I was having me period when I got there, I didn’t realise ‘til I got there and they said ‘oh you’re bleeding, we can’t do it’. But me doctor’s, I won’t name it, that I was in at the time, they never ever sent back for me, I’d had a miscarriage and normally once you’ve been pregnant don’t they, you have to go for one and they never ever sent for me and then I changed doctors. About four year ago, I changed doctors and ……… he’s in ……… now and they kept sending me a letter every other week, you must come for a smear test you know and I kept ripping them up and then in the end, with the problems I went anyway. Even when I went to see the doctor I used to lie and say ‘oh yeah I’ve got an appointment’ and I never but they did send for you and that’s another thing, it’s important that the doctors do send for the girls, keep writing them, even threaten them like you’ll be struck off if you don’t come for, you know, anything that can save lives. So ….

It feels like, that’s amazing Lynsey, you know it feels really lovely to have heard because obviously we’ve met a lot and we talk about certain things but just to hear your story has just been wonderful and you’ve brought up loads of really important things about what’s helpful and what’s not and you know kind of advice to people and you know there’s lots of little gems in there I think that is going to be really, really helpful. I don’t know whether, you know there’s anything else from your perspective ……… or anything else that Lynsey’s thinking that I want to include in terms of what’s helpful, what’s not, bearing in mind you know the kind of people that are going to listen to this.

Yes it’s mostly hospital staff and hospice staff that you worked with isn’t it. Have you had any contact with any other services?

Recently social services have got involved now they’re helping, they’ve got on to me landlord, I’ve just moved in with me husband so normally you have to be living there for 12 months to become a tenant but they’re aware of me situation and so they’ve basically got me on the tenancies thing and they’re getting me a door, you know electric door so I can buzz people in with me being upstairs I don’t even, although I’ve got me stairlift, it’s saves me going up and down. But with me being deaf, I still won’t know who it was so I can’t buzz them in so they’re getting the one with the CCTV, we’re still awaiting for that and they also, there’ll be like a watch where, and a vibrating light if somebody’s at the door or the phone goes or the smoke alarm, telling me which one’s going off. So that has to come to a £1000 that’s all they’ll provide; the only thing that I’m having problems with at the minute, I can’t get in the bath even with me bath chair, it’s causing a lot of pain due to me legs and stuff but I’ve tried it and it really is painful so I’m having to get a washdown stood up. They’ve given me a chair now, like me sister give me a washdown and I’m having problems trying to get a shower off somebody and nobody will provide it so, ‘cos there’s no money anywhere so now I’m having problems with that and the only way I can do it is try asking round the family which, they probably wouldn’t raise the money, to try and save some money to get a shower ‘cos I can’t afford one, but …. and it is a big problem at the minute

it’s those things that maybe I would take for granted that I can do every day like look after myself and have a shower, I get in and out of the bath and have a shower that make a huge difference, doesn’t it Lynsey, to just feeling on a day to day basis that you’re getting on with life?

Well I just tie me hair back ‘cos obviously it’s greasy it’s hard to get it washed, the only good thing is when I was in here there was a shower and I was having one, it did make me feel that little bit better being clean, you know even getting a wash down you still don’t feel, you know clean, clean enough so … the shower, I’ve never liked showers anyway, I’ve always loved me baths and I really do miss me baths but when I was in Scotland I was thinking, everywhere, everytime we’ve gone on holiday there’s always been a shower ‘cos I’ve been disappointed not having a bath. So this time there was bath, but it had a shower head over, but that’s still no good ‘cos I can’t get in and out of the bath. So what I’m always having to do is go over the swimming pool and use their shower but I’m still, the bikini on, cossie on so I’m still like not getting washed properly you know in the private parts so …. I think there should be able to be somebody who could fund for things like this and I mean if I could get one I would obviously have to get in touch with the ……… and ask them for permission to take their bath out and put a shower in ‘cos ……… son-in-law, three of them believe or not are all plumbers so there’s not a problem getting it in, it’s getting the shower and the tiles, that’s the problem. So …. but just have to wait and see. I mean I did see the OT and she did say ‘well even’; I said if we could come up with, ‘you could tell me how much it’s going to be and I can try and raise that money’ and she said ‘well it will take months anyway’. I said so you’re saying basically months I haven’t got, but I’ve got an Argos that I’ve seen, just the cheapest, the tray and the shower and I didn’t realise you’d need a water thingy you know, but if I could just get the price and then I’d know how much I’d need to try and raise for a shower. So, it does, like I say, it will help and I’d be able to, with me chair, be able to go in myself if I want to, it’s only if I need me hair washing or something, need someone in probably to wash me back, but just say one night I’d just fancied a quick shower just to warm me up or whatever put me pyjamas on. You know it would be nice to do something for yourself for once, without having to depend on somebody else.

I think that’s one of the important things isn’t it Lynsey, because I know you’ve said before that quite understandably, your husband and your close family are concerned about you so you feel like you don’t get, you’ve lost all your independence and sometimes you just crave to be able to do something for you.

I mean ……… won’t leave me on me own anytime now so that’s that bit gone now. I mean I’ve lost me car, that was me independence, me car. ……… gets upset because like, coming here for example, I have to stop him doing whatever he’s doing to come and drop me off, two minutes away. Where if I had me own car, I could do it myself, so you know. He says oh no he says he doesn’t mind and that but then if he can’t really, if he’s got a doctor’s appointment or something, and he really can’t bring me or pick me then I’m having to depend on somebody else because he won’t leave me, he won’t let me get a taxi on me own or anything like that. He needs to make sure that somebody’s going to be with me otherwise he’s going to cancel his appointments. I mean he has a lot of health problems himself just so I’m looked after and that upsets me because I think ‘well his health is important as well’. He has COPD hypertension and all that; he’s got problems with his feet and stuff like that, arthritis, diabetes, angina and I think ‘well, you know you’ve got to look after yourself as well’ but he’s putting me first. But I suppose if it was the other way round I would do the same. I even said the other day ‘I think I’m going to save and try and hire a car for the day just to have a drive about’. There again if I got pulled I would get me licence took off me because of the drugs I’m taking, I shouldn’t be driving. I’m a danger to meself and others, so

You can’t win can you?

It does take away all your independence and everything. I mean I wouldn’t have thought if somebody told me ten year ago, your sister’s going to be washing you down and you know seeing you naked basically, I’d laugh in their face because I, ever since I can remember being little, I’ve always been a private person, I’m really embarrassed as well you know, I wouldn’t let anybody see me get changed or anything. Where me friend used to get changed in front of me and I used to turn round and think ‘eeh what’s she doing, she’s a lesbian or something like that, you know I just, I was always a private and close person but when you’re poorly, you’re not bothered who sees you I don’t think. And you know, even if, I think me brother, if it got to no choice and me brother had to do it, I don’t think I’d be bothered because when you’re poorly you can’t be bothered. If I was on one of me good days and happy and stuff, I’d say ‘no you’re not watching me ………’ you know, but it’s very rare you get them good days now. There’s a lot, we’re doing a lot of crying and it’s more upsetting I think, it’s hit us more harder now what’s happening, even before we found out that I, they’d be surprised if I see this year out. And we’ve found it more harder to share than what we’ve found it any other time and I think it’s been the burden of protecting others

So it feels like you’ve got to, ‘cos you very clearly said initially it was almost like it was happening to somebody else and then you were more concerned about protecting other people and that in way stopped you from taking it in and it feels like now, you know, through all this time, this is the time where you and ……… particularly have kind of, the reality is, is hitting you now and so you’ve been more, more emotional about it and you know kind of realistic in a way about it as well

It’s like the other day ……… said even though it’s hard, we’ve got to, you know we’re going to have to do it; you know the funeral’s already booked in, we’ve already done that a couple of year ago, but now we’ve got to go and pick the plot you know. I’m supposed to do it, if I’d have done it last year I’d have been fine, because I was fine about it all, where now it’s going to be harder to do it now, we’ve got it booked, it needs to be done. And if I want something I want on then I’ve got to go and get all that written and you know stuff like that and it is like, there’s jewellery and stuff that I want to take with me and I was thinking the scan was more important because that’s me baby but ………, ‘cos I have a thing like I always say ‘you know they take the jewellery off you, you know they pinch it’ .. there’s going to be an open coffin so ……… just going to come in at the end before they shut it and put the jewellery on me and then shut the coffin so

So is that particularly sentimental jewellery Lynsey that you want?

……… bought me, yeah and he buys me all the charms for it and there’s only him that buys them so, but me wedding rings, I’ve got a long necklace which is unisex, I want ……… to have them round his neck, so keep them himself. But the other stuff, there isn’t like much more left because I handed stuff into the hospice and I’ve sold stuff towards a holiday and stuff last year and there’s nowt really left really. But like I said to him, last time, stop buying clothes and I sort my clothes out ‘cos anything clothes or anything like that it’s all going to the hospice. But I have loads of teddies, as you know I’ve collected (inaudible) and stuff and they’re going to the … Hospice. So we know exactly where’s going where but that’s down to ……… when he’s ready to part with them.

You’ve done a lot of planning haven’t you? And as you say, last year you were able to be very clear and plan your funeral and what you want and pay for it as well, but it’s like now you’re fine tuning that somehow and it feels like it’s harder because the reality’s hitting home more and

We’ve lost a lot of things as well and the main thing, we had a cruise a few year ago, before I found out that I had cancer then as you know I wanted that one last cruise, didn’t I, last year? And then we found out the cancer was back so we had to cancel it and I lost all of my money, that was the last of our savings so me brother done a boxing fund raising do which I got some money and the hospice got some money, mine was to pay for me funeral, the rest went to the hospice and like, just like you know I can’t I know we’re never ever going to be able to go on that cruise and do that last thing because I know there’s no way the money can come from anywhere, we can’t even afford a shower never mind a cruise, so

And you got married

My main thing to go on to people, if you want to get married, if you want to have children, whatever your plans are for the future, don’t wait for the future, do it now because you never know what’s round the corner. Are there any more questions you want to ask me? I’m stuck now

You were saying about getting married

Yes, Lynsey’s just got married

Yeah I got married, it was a secret wedding. It was me mam and dad and his three daughters there. It was nice, we both went in as if we weren’t bothered, soon as they started their talking and that we both burst out crying because the more it meant to us, more than anything. We even had the registrar crying because he knew our situation as well

That was quite recently then Lynsey, was it? Quite recently

Oh yeah

In January

January the 6th, yeah. What happened, when we booked it three weeks before, I’d ended up in, we had to go down, you know show your passport and stuff the next day, but I don’t know, they phoned an ambulance came for me anyway, it came to take me to ……… because I’d had really bad stomach pain and it had been all day. They took me to ……… so ……… tried going down with all the ID and that and they said ‘oh no we can’t accept that’ so he said ‘we’ll try and fetch it down tomorrow’ but I got kept me in bed so what I had to do was make, make out I was going for a coffee and I flew down to the registry office and the registrar had got snowed in, so they said if you don’t get it done tomorrow you’re going to lose your day. I said ‘well that’s your fault not mine’; they said it didn’t matter because that’s the way it works on the computer but luckily enough that day I got discharged and we finally got there. Because we wanted it, 6 is me favourite number, it was me Nana’s birthday and it’s the last day of Christmas so it was still kind of involved Christmas as well, ‘cos we did want to try and get married over Christmas but that was it, it ended up perfect anyway.

Talking to anyone about ones true emotions on any subject is not always easy, especially to strangers on a Talking Health Matters web site, but I will give it a try; perhaps some of you have had similar experiences.

I was expecting MH who has worked with me for 5 years this month, to say she was giving in her notice because for the past year MH and her hubby have been going through all the hoops, and believe me the authorities leave no stone unturned so there are many, many hoops to jump through, to become foster parents and last week it was confirmed that they had been accepted. I was thrilled for them both and was already emotionally ready for her to leave. Her job along with MF, who is dropping a night, was put in the job section of the local newspaper, and I am, as I write, waiting for returned application forms. A situation I have found myself in a few times since 2006 so why are things different this time, the answer is J and her dog Sally.

J has been with me, as I said just over a year, and does my weekend shift 10 am to 6 pm. I really thought that we would grow old together, but that now will not be happening. J is a great cook, she used to be a chef on the rigs but left to get married and bring up her family. Her other job is working with people with learning difficulties which she loves, and the organisation that she works for has offered her a position which includes her love of cooking that J just will and could not turn down. If all the plans in regards to this position fall into place today, I will be getting her months notice on Saturday. J, along with her dog and mine, often go out at weekends for long walks along our coastline. This I will miss terribly so will Jack and Molly my two Jack Russell’s. There are lots of other things I shall miss about J , her very dry sense of humour, nipping to the bottom of my garden for a quick ‘tab’, her Scottish accent, and most of all J and Sally, who has a unique bark to get your attention and their being themselves.

J told me about her decision and the reasons for it on the Saturday and on the Sunday while I was in church, I found myself fighting back tears as the reality hit me that my friend cum carer was leaving. That fact made me realise that no matter how hard I try not to get close to my care team, in some cases I just fail, as in the case with J. I now have to face the prospect of trying to fill her post, easy to fill the post but hard to find anyone like her and Sally. So why this narrative?

I realised that I may not be alone in feeling as I do when a member of my care team leaves. It also appears no one in authority has ever given it a thought about how some who are dependent on the people who care for them feels when that person leaves. My care team are the most important people in my life; I have no immediate family, and friends not connected with my care you could count on one hand. My care team share with me my good and bad days. They share with me and make it possible for me to live my life as I wish to, whether that is driving my power chair from Lands End to John o’Groats, working as a volunteer with McMillian Cancer Support, feeding me, or even taking me to the loo, someone from my care team is there with me. I slowly build up a trust with them, I hear about their lives and they share mine. I share with them, some more than others, my secrets, fears and joys, then that person is no longer there as in the case of J and a few others. To me this whole situation is like living through bereavement but without the emotional support you need. I am lucky this time as there is one particular carer who is a third year counselling student and whom I can talk to, but I have just learned that due to an accident she is off sick for 6 weeks. I feel a lot of phone calls will be going in her direction as this time I work my way through how I feel.

I have been asked, for this narrative, to log what happens to me over the next few weeks, this I will be doing. At this precise moment I am waiting for a text that will say if or when J is leaving. I should know early evening. Who knows I may be lucky it may not be until the New Year.

It is 5.30, time for Neighbours on Channel 5 and I am waiting for J’s text. I am feeling unsettled and every time I get a text I jump because I think it is J… Must be like waiting for any verdict especially when that verdict will have an impact on your life.

At 7 pm my text went off, no it was not J it was someone answering my add in the paper sending me her postal address. Details will be put in the post tomorrow. My waiting goes on.

It’s Thursday 3 pm and this morning I received the text from J, I will not revel the contents but will tell you that it is official, on Saturday J will be formally handing in her notice. I have so many emotions churning around in my mind that half of me wants to cry, the other half is excited that a new era is about to start in my life. New carer staff, new who knows?

Everyone is telling me that everything happens for a reason. How many times have we heard that old cliché? How many times has it proven to be true? When one door closed another opens. We have all heard that one. I think I am getting to old for changes in my life, but saying that, I have three new volunteering projects that I am hoping to get involved in. I have attended training sessions for two of the project and the third I will attend in December. Yet another case of opening a door and seeing what is the other side, but you know what I had started to open these doors before J told me her news. I just want things to stay as they are but I have no control over the situation. I am feeling helpless and if I dare say the D word, Disabled.

My staff are free to leave when ever they want, and do. But with employment law as it stands, I cannot ask someone after one year of working with me, to leave just because we do not get on or I don’t like them.

I feel very lonely at the moment. I feel I have lost control of my life. Changes are being made that I don’t want to happen. J, I know you will read this narrative and I want you to know that you and Sally will be missed terrible. I know we all say we can keep in touch, stay friends but that will very probably not happen.

Right now I just need a very big hugggggggg. So not going to happen. Maybe my next piece should be on the subject of touch and what it feels like not to have it, unless of course someone is doing my personal care. A different touch to what I am talking about, but I think you know that.

So what next.. Before Saturday, when J returns to work, I will put the add in the carer required column of the job section of the local newspaper for J job, that will go out next Thursday. I will get about 25 replies and information packs will be sent out. If I am lucky 20 will be returned and I will offer them an interview but only about 6 will turn up. 2 will make it to my home and one will be offered the job on a trial of 4 months.

As regards J I know what the next four weeks are going to be like with J. We will both try and carry on as if all things are normal. This Saturday J will come into work. I shall tell her that I am happy for her, we shall talk about her new job and the dogs will chase each other around the house. The kettle will be put on coffee. I will then be taken in the garden if it is not raining, coffee and tabs for J. I have this Saturday a plan, best to get out and about. Why, for me to get away from the reality I am now in. We are going down to the beach, meet up with B, run the dogs, have lunch of fish and chips and talk. I need some talk time with B by myself, but I am not too sure when that will happen on Saturday, if it happens.

As I am been honest with this web site, it is times like these that I just wish it would all stop. That I could just say enough is enough. No more social services, no more fear of my care package been cut. I have this fear at the back of my head all of the time. No more dependency on others to enable me to do things from opening my gate to let me out, to feeding me, and to wiping my bottom. I think you know what I mean.

I know that I am very lucky. I have a nice house, people around me that care for me. I am in very good health, but I am not free. I would give this all up to be able to put a pack on my back, Jack and Molly on their leads, just close my door and go where the wind blows. To be free again from my dependency on people. But that is not going to happen unless there is such a person as a Fairy Good Mother.

7.00 pm Thursday. T has also given her notice. T only did 3 hours per week for me and has now found a full time job. T will be missed very much. This all goes to show me how reliant I am, a reliance I hate, on total strangers to run my life. Total strangers whom I have only meet because of an advert in the newspaper. If I was disabled as I am with a hubby and family around I am sure I would feel a lot different. Love of a fellow human being must help someone in my position to feel wanted and valued as a human being. This is a feeling I am not getting right now.

Monday, I need a hug. I can tell you, I am in an emotional mess with J leaving. This forming a relationship and trust with someone and their dog just to have it broken is a killer. From the short list (the two jobs were advertised) only 2 said they were still interested. The two I would think could take J place have said no. It is like having any relationship broken up; it is like having a friend saying they do not want to play with you anymore. It is a bereavment. I must try harder not too get close to my carers, Keep that professional line. How long can I keep this up time after time?

I know that I will work my way though all the feelings, good and bad, my care team will see to that. I know that tears will be shed when J and Sally leave for the last time, but there is still a lot to do before then. I know that a suitable person will take their place in my care team, but that will take time.

Final update, 3 weeks later (Christmas approaching), J has now left the building. We are to stay in contact, just hope that is so. We said no goodbyes, no tears, but I was fighting back the tears all day. The final lift in the hoist, the final coffee, meal, that sort of thing. I shall miss J and her dog immensely but have the New Year to look forward in a few days. I have signed on 2 new staff, and there are a number of new projects for me to be involved with but these are all material things, it is the relationship that we have with people that is the most important thing, well I think so.

All good narratives should finish on a positive note and this one is no exception. So to finish this narrative, I would just like to raise my glass to the New Year and bring on all that it holds no matter what it is. Main thing is to stay positive, stay focus and enjoy the moment. This I fully intend to do.

I hope this narrative has been of some help to you. That someone in authority will realise that perhaps they should look into how they can support people, if they need it, whose carers have moved on.

ML