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Una & Bill ' Interview 34

Age at interview: 62
Brief Outline: Her husband first noticed symptoms at the end of 2005 and was diagnosed with Motor Neurone Disease. A ventilator greatly improved his energy levels for nearly a year. He had a PEG fitted but does not yet use it for feeding.
Background: Una is a retired former NHS Patient Involvement Facilitator, married with 3 adult children (1 died recently). Ethnic background/nationality' White Irish.

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Una’s husband Bill started to notice symptoms two years ago in Autumn 2005. He developed a slight cough when eating. He also became very slow and tired, and Una noticed fasciculations in his legs. He was referred to a respiratory consultant. By the time they went for the appointment, she had already been looking for information on the internet and started to suspect it might be some kind of degenerative neurological condition. He was referred to a neurologist as well and had an EMG test which was inconclusive. At the next appointment she asked if it might be MND and the doctor said she was glad she’d asked that question because it was a diagnosis they were considering. She felt she and Bill had different attitudes to information – he didn’t want to know anything until it was certain whereas she wanted to find out more. When the diagnosis was finally made, they were referred straight away to the MND Association regional co-ordinator, who was brilliant and gave them all the support and information they needed. Their GP retired around this time, and the new GP also turned out to be an excellent support, as well as their occupational therapist.

By this stage Bill was having more difficulty breathing, and it was suggested he have a PEG fitted while he could still have an anaesthetic. They had not realised the maintenance the PEG would require but now they are used to it it’s fine. He does not yet use it for feeding. Having a ventilator has made a huge difference to his levels of energy. He now uses it about 12 hours per day (mostly at night) and attends a sleep clinic for regular monitoring. The staff at the sleep clinic and the hospice he attends for respite care have had helpful conversations with him about maintaining his breathing and thinking about his quality of life. They advised him about making a ‘living will’ which they keep in bottle in the fridge, with a green emergency cross on the door. He hopes to be able to stay at home with care provided from the hospice, which has provided wonderful care and support.


They try to lead as normal a life as possible, but Bill can get frustrated at times. Una copes with the emotion, expressing her love through practical tasks, otherwise she fears dwelling on it too much would not help either of them. One of their daughters died ten months before the diagnosis, and she sometimes feels she hasn’t been able to grieve properly for her daughter. She found it very helpful to go on a carers’ course at the hospice, where she was able to talk to other carers about the conflicting feelings she has and know she wasn’t the only one to find it hard to live with. MND Association support groups have also provided great emotional support and human warmth to them both.

 

 

Una’s husband Bill had a PEG tube fitted while he could still cope with having the procedure but...

Una’s husband Bill had a PEG tube fitted while he could still cope with having the procedure but...

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I think looking back the thing about the PEG, having a PEG fitted was because, this was sold to us on the basis of, “You’ve got to be able to support an anaesthetic while it’s fitted and with your breathing so bad, let’s do it now rather than when you don’t have the choice, it’s a breeze kind of thing.” And what we didn’t realise I think then was that this is something you’ve got to maintain. You’ve got to flush it out every day. You’ve got to stop the stoma healing over.

It was fine actually. It wasn’t the, I mean there it was, it’s sort of like an alien that’s come in to live with you in a way. But it’s so commonplace now, it’s so used to it. In fact Bill was able to do it himself for some time and isn’t now and I do it and, you know, it was really no problem. He doesn’t actually take food through it. He doesn’t need it for that purpose. It’s just the other thing. And I think some of the people we’ve seen, we go to the sleep clinic at [city] and I think they were a bit surprised that we’d had it, it had been offered him so soon.
 

 

Una met a ‘befriender’ through the MND Association who supported her as she dealt with many...

Una met a ‘befriender’ through the MND Association who supported her as she dealt with many...

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The MND Association has been fantastic, the befriender I have, I mean we actually like each other so apart from her role that has been amazing. The hospice ran a carers course and on that I met two other women whose partners, whose husbands had MND, and we’ve sort of stayed in touch, two of us have stayed in touch and that sort of support was quite good.

I think on the, on the course, you know, you get the feeling that everybody’s in an ideal relationship, their circumstances are fine, you know, and they’re just doing this carers thing on top. And of course life isn’t like that and through my befriender I know, you know, you have a, a whole lot of emotional issues to deal with. You know, your relationship may not be at the highest point it’s ever been. You may have feelings that make you feel quite humble because you don’t like the feelings that you’re having. But, we’re only people and people do have those feelings and other people have those feelings, and I think that has been helpful too.
 

 

Una felt that there was little point making the long drive to see the consultant particularly...

Una felt that there was little point making the long drive to see the consultant particularly...

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Because all these other consultants actually, the neurologist for example, there’s nothing they can do. You trail twenty miles to the hospital, you see the effort of telling all the things that’ve happened since the last visit, back you go. You kind of have a vague hope it’s a two way street, that somehow you’re contributing to some pool of knowledge, you know, that’s made it worth your while, but actually there’s nothing coming back to be honest. The respiratory people in the other hospital, it’s terrible because you don’t see the same, you don’t see the same doctor, you don’t see the consultant and I think with MND people actually it might be worth looking at something like that. You see a new doctor who isn’t familiar with the file, and you see your partner wasting all that energy, telling that same story all over again and you think ‘what is this about?’, you know?

And you give them the eyes though, you know, that’s what I’m thinking, I’m telling you what I’m thinking, you know
 

 

A new GP who had taken over Una’s husband’s care had been keen to learn about motor neuron...

A new GP who had taken over Una’s husband’s care had been keen to learn about motor neuron...

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Because when the consultant diagnosed Bill, said, you know, “This is what.” He handed him a piece of paper with the MND Regional Co-ordinator’s details on and that was how we got booked into the MNDA. And, do I say her name? She was brilliant, she was absolutely brilliant, she came to visit us at home, she gave us a pack, she gave us the website, she got the paperwork sorted out for the blue badge and the DLA, she was absolutely superb and she said, “We’ve got this pack we send to GPs because they are not always, you know, they wouldn’t often see a case like this maybe never, we like them to, you know, know this stuff.”

Of course what happened was our GP was on the point of retirement himself, and we discovered we, he, they’d divvied up his list and we were just put with somebody and weren’t very happy in our position that we hadn’t had a face-to-face because there was a list of things of course that the co-ordinator had made us think about that we wanted to ask. So we did get a face-to-face with the new doctor. Very glad actually we’re with the new doctor because he’s the young. I don’t think he has anybody else with this condition. He’s keen to learn. He hit all the buttons that the co-ordinator said you must hit. He linked with the community physio, with the hospice, with the speech and language therapist, and so suddenly we had all of these things happening. It was amazing.
 

 

Una discusses the possibility that GPs who have patients with MND might share information between...

Una discusses the possibility that GPs who have patients with MND might share information between...

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It’s always surprised me, well through the MND Association we’ve come to know other people living in our locality who have, who live with MND in their, and their partners. And of course they go to different GP practices and I just wonder what sort of learning net there is between those doctors, you know, given that you’re not going to see many people in your, in your professional lifetime but maybe in the same town there are three or four people with that condition. And what sort of learning net there is, I don’t know. It’s, at that level, that’s struck me.  

 

Una’s husband has had Motor Neurone Disease for several years. Having to watch him lose more and...

Una’s husband has had Motor Neurone Disease for several years. Having to watch him lose more and...

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So yes how does it affect your, your every day-to-day life?

I think it’s, it’s crept up, bit by bit, you know as you add on more and more tasks that you do. Things that Bill could do last month are suddenly, I find I’m doing. I can’t quite recall the break from him being able to dress himself and completely wash himself, to that not being possible, to my needing to be in attendance most of the time when he’s moving around, especially if he’s using the stair lift because there’s a transfer at a landing across to another one. I can’t quite remember, but I do remember feeling sometimes [name], my daughter and I we, catch ourselves talking as though he isn’t here. And I think that’s a sort of way of being prepared for him not being here. It’s, it’s sort of reflects that all of these little steps are mini-bereavements if you like. As you do more and more things, you know, cutting up food, all of the helping tasks. Being in a, not being able to be on sticks, having to have a Zimmers, then having to have a wheelchairs. Assessments for yet more wheelchairs and you see the role developing and you feel the conversations are all about the little nuances of, of things. Bill has a light writer now which he’s meant to be practising and using. You can pre-programme it with sort of frequently used phrases which might be ‘bring me a Fortisip’, or [laughs] ‘oh God’ or ‘bugger off’ come to mind you know? [Laughs]. But it’s all that sort of, little detail, and when people come, when friends come by or we have a meal with friends and then we sort of feel normal again, you know and the conversation isn’t all got this undertone of MND and stuff, I think it raises Bill’s game. And people say, “Oh isn’t he great?” You know, “He’s himself inside this sort of carcass that’s packing up on him.” Which he is, but it also comes at a price because alone together there’s the frustration and there’s the, you know, all the difficulties and all the emotional stuff too and that’s not, that’s not easy. Yes.


Have you ever felt, how did you, I suppose your emotions, how have they changed over the course of time from the beginning, what sort of, different feelings have you had?

Oh Carol I don’t think I can answer this.

Have you ever felt depressed?

Yeah.

It’s all tied up though.

It’s all tied up. I felt MND cheated me of my grief from my daughter of a process that I was, you know, was going through, that we were both going through in totally different ways individually, which was making it very hard for us as individuals together. And then MND came and has really taken over our lives so that this interlude which is MND has, I focus on that, other things are waiting there, have never gone away, are always there, will be. But MND is kind of where we are now. So there’s that. There’s, I think that’s really it, you know, there’s exhaustion if that’s an emotional thing as one just feels so jolly tired. There’s, there’s always in spite of Bill being on a ventilator, you’re always sort of on alert for something, yes.

Listening out?

Yes I think so. I think the quality of your sleep, my sleep, just, you know, you’re always sort of on alert incase.

What about going out. Go out to the shops and go out to the…?

Well I do, I have a mobile phone. That’s another hot tip, keep a mobile phone [laughs].
 

 

When Una’s husband went on a holiday to Centreparcs organised by the hospice, she felt lonely...

When Una’s husband went on a holiday to Centreparcs organised by the hospice, she felt lonely...

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So how do you feel when Bill goes to the hospice?

Well, he’s been, well he’s been twice to the unit for respite and he’s been once on a holiday with them. They actually take ten or twelve patients to Centreparks so he’s, had that. The first time when I came back I felt terrible, I felt, this is the rest of my life, here’s this empty house and it felt awful. And I suppose that’s what I got, have to get used to really. I mean as the disease progresses you get used to doing things on your own that you would do as a couple, go to a wedding, go to somebody’s party, all of those things. It’s not easy, but, you sort of do it for both of you but, you know, you know that this is your future life. So there’s sort of that, and then you know that because he’s in a different setting physically the logistics of doing everything, the loos, the showers that are different from at home and you hope that he’s not losing, dropping down a level by things being different or easier. I mean for example we have stairs at home until we had stair lifts and it was important that he got some, he kept up his stair [laughs] going up and down a little bit when he was in the hospice and stuff. And so there’s just that element to it as well.
 

 

There are practical tasks to be done, and being a carer means that becomes the way you express...

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How do you think, how do you find a way to cope with that?

I think I kind of, I think, I don’t think looking back on my life that I’ve been a very good caring person in terms of, I don’t mean as a parent but as, say with elderly relatives in my family where I’ve had that opportunity to be more caring. And now, you know I have to be, I have to step up and do this thing which I never imagined I’d do but I, think you get the resources to deal with what life chucks at you because life can be shit basically, and I think somehow you do cope, well you do. And, what did you ask?

How you cope with the emotional side of it?

Oh yes, by really just practically, just doing the job, and, it amazes me really the sort of things you get used to doing that don’t offend you or are no difficulty. It’s not just because he’s somebody you’ve lived with for thirty something years and, you know, you’ve had all that love, and all those memories and all those experiences together. It’s just that on another level here’s a practical task to be done and the doing that, has to be the way you express the love or the other emotional side because really, it’s quite a delicate line between falling down a big hole, by expressing the emotion and then just, you know, being useless and actually doing the job, you know, and keeping the show on the road a bit, your show and, and Bill’s show too.

Yes. Okay.

I think that’s what I think.

And the other thing I would say is how we cope in our lives it’s kind of to try and set up milestones, achievable ones that really worked and my daughter got married in January. That was hugely important to be, have Bill be part of that. And you know, I think adrenaline carried him through actually then the total collapse afterwards was something else. But, and then to have a retirement party when he reached his sixty-fifth birthday with friends and so on around us was another good milestone. Every other month or so, our son comes back from the States to be with us. Those are the sort of… that we keep in mind, that keep him going I think.
 

 

Una hopes that her husband Bill will be able to die at home with support from the hospice but...

Una hopes that her husband Bill will be able to die at home with support from the hospice but...

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Yes okay, and have you talked about what kind of care Bill would want in the months in, in the future?

About when he dies?

He’d like to die at home, preferably. And we’re sort of geared up for that. The hospice are trialling respite at home and we’re going to see how that works out for us next month. So basically they’re all geared up for, for care at home but I think really it’ll come down to, you know, when the time is right what really, what really does shape up.

Oh and that’s another thing because other people we have known with MND have died in the district hospital and that is a definitely a place Bill doesn’t want to be taken to or die. I mean we hope we have it, you know, everything, you can’t anticipate too much can you? What will come down, but we hope it will be here and if not here then the hospice where he dies, yes.
 

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