Una & Bill - Interview 49

Age at interview: 62

Brief Outline: Una's husband Bill first noticed symptoms at the end of 2005 and was diagnosed aged 63. 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.

More about me...

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 (muscle twitching) 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 electromyography (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 Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' which they keep in a 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 to 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.

Her husband went to the GP about a slight cough when he was eating. Within a few months he was...

Well in October '05 Bill went to his GP with two things, one turned out to be a UTI, urinary tract infection, and the other was this slight cough that he had, oh when he was eating, it was just, not even an irritating thing but it was always there when he ate food. So eventually the GP, you know, did some lung function tests. They weren't very brilliant. In the, in the meantime, in the interval at the end of February '06 and at the beginning of March, which is our wedding anniversary, we went to New York. Our son and his wife live there. And it was of course very cold at that time of year. We did a lot of walking around, a lot of art, a lot of museums, opera. In the opera, Bill kept falling asleep, walking around, going up three flights of stairs to our son's flat, really he was slow. And I noticed when he was resting on the bed this ripple effect of the muscles in his legs like ripples on a, on a pond and I said, 'God, you know, can you feel that?' Because he's not totally aware about these sort of things and he couldn't feel it and when he looked of course he saw it, and I began to be quite worried because of the falling asleep, there were headaches, things like this.

Non-invasive ventilation hugely improved her husband's quality of life, but now they realise how...

But I think really before he got the ventilator he was in a very shabby state, his breathing and the toxicity, and the headaches, and the falling asleep all day long. The ventilator, a sort of bi-pack machine was absolutely astonishing. It reset his whole system. It gave him energy, he didn't have to rest between every process of getting up, you know, shaving and teeth and, you know, which was really laborious. It absolutely restored his system. Only now I suppose, less than a year later everything else has caught up and it's, he's more and more dependent upon it put it that way, so.

I mean we had problems in the first hospital with a ventilator because it was a machine they'd only just acquired. They weren't familiar with how it worked. That was one of the reasons Bill went back to the hospice to get it set properly, the alarm kept going off and they didn't know why, and in the end they just rang the manufacturers, who said it's simple, you know, why they hadn't done that in months goodness knows. But now we're sorted we go to, a sleep clinic and a different hospital for the respiratory consultant, and there is a, a problem I think with, you know, sort of seamless care. But at the sleep clinic they download from a plastic chip in the card in the machine all the information every three months, how well it's working and if it's leaking and what's going on here. And they actually, for us, because we like information, have given us the greatest information and understanding. When we saw them last they said, 'We can tell you the machine is doing ninety-five percent of the work for you at night'. So we know that without it Bill wouldn't be alive, and they told us, because well then you tend to ask, 'Well so what next?' 'Because you don't know, I mean do they ramp up the pressures? Do they reset the machine? What happens here? And they said, 'Well no basically.' They said the most startling thing actually, when we're asleep at night all our muscles are paralysed, all our motor muscles except our diaphragm that we need to breathe, except in Bill's case of course it's packing up. And that's to protect us from things we may do in an, in, in our dreams or extreme things that we may encounter in our dreams, which is extraordinary'

Yes.

'actually.

It is.

So we had this amazing piece of information. We knew the machine was doing most of the work and the answer to the question about, 'Well what next?' was, 'Well when you are dependent fifteen, sixteen hours a day or using it that much,' because Bill will use in the afternoon for a couple of hours and will use it sort of about twelve hours a day now, 'we say you're ventilator dependent at fifteen, sixteen hours and we'll issue you with a backup machine so that you can have it, you know, in case the other one goes wrong or something like this. And basically from there on you are making choices about, about the quality of your life and, you know, the end of your journey with MND,' which was a bit emotional but was the most helpful thing.

Becoming a carer has crept up on her. Each step feels like a mini-bereavement but it's amazing...

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 stairlift 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, all of the helping tasks. Being in a, not being able to be on sticks, having to have Zimmers, then having to have 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 Lightwriter 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 [drink]', 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.

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, [noise] 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.

The hospice has been fantastic and set up a carers' course. Her MND Association visitor knows how she feels and helps her deal with guilt and negative feelings.

Our local hospice have been fantastic. They know our home situation, they hold the link between so many players and I think, you know, someone in a position to do that is brilliant. They've always been able to help and advise with sort of practical things that can enhance life. And I think when Bill started going there for respite, once a week, he goes to day care once a week, to have, we just thought, 'Oh, you know, that gives us a break from each other.' But it was the medical expertise, the observation of the physio throughout a day not just on a half hour visit that was absolutely astounding in the support it gave. 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 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.

Can you tell me a little bit about those feelings?

Well' sometimes, this sounds awful, sometimes you wish it was all over you know? And that's terrible. I don't wish Bill to have MND. I don't wish him to be dead. But, you feel, and, my befriender has said, you know, the sense of relief when actually it finished, and then the guilt that she felt because of the relief that she felt. And you can sort of in all these mini-bereavements I spoke about before as things are gradually deteriorating, sense that feeling at the end, you know, that finally you know there isn't this thing. It's a bit surreal because you can't actually imagine this person not, not being there but, you know, and you don't feel proud of feeling that feeling that I have to rebuild my life.

You're able to look, you're able to look forward now to the end and beyond, you're are able to do that?

Sometimes yes, yes. I think the, some of the time there are just days and we just deal with the day as it comes. It's very difficult to plan anything for example so that's why I say we just deal with days. It may be someone's coming at the weekend but it may be Bill isn't up to it actually and we have to say sorry, and of course they understand all that and that's fine, or longer term plan, like going into respite because I have something that I'm going to do or want to do or something like that. Well, you can sort of plan for that but you always know, nearer the event things may change because the circumstances have changed.
 

Their MND Association Regional Care Development Adviser and their GP have been excellent in...

When the consultant diagnosed Bill, 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 [MND Association]. 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 [Disability Living Allowance], 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 know this stuff.' Of course what happened was our GP was on the point of retirement himself, and we discovered 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 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'

So all of this floods through the door, and within months, you know, I had two pages of contact numbers in my diary for everybody from OTs to physios, to the hospice people, to the speech and language, to the nutritionist, to - you name it, it was there' I think at first to have that huge support was just overwhelming actually, it was astonishing, astonishing. When the MND Co-ordinator came, she also linked me with somebody, one of their volunteers, a sort of befriender, if you like, someone who's gone through this themselves. And that was amazing as well because our visitor, we've struck up a friendship I think that will outlive our MND journey together and because not only we like each other, but she's very keen to call a spade a spade and that's very helpful to me.

She wonders if the hospice staff realise how tiring MND can be. She feels lonely when he has...

I know when Bill goes to the hospice, for example, because the emphasis is so much on the quality of life and you can go in there and say, 'I hope he's going have a nice peaceful time.' 'Oh, we're not here to give him a peaceful time', they'll say in their cheery way and you'll think 'Well, that's a joke but I hope that underneath they really understand how dreadfully fatiguing everything is to him.' And you're, not, not quite sure about that. I think actually - I'm not sure about this - but I think the MND Association gave some sort of crib sheets to the hospice and people so that they would have that understanding. 

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

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 Centre Parks 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 loo's, 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 stairlifts 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.

Her husband's Living Will (ADRT), is stored in a special bottle in the fridge. A sticker on the front...

Things that we did early on that we were urged to do, or as suggested by the Co-ordinator were to think about a Living Will (ADRT), to think about powers of attorney and we did that very early on. The hospice introduced us to the bottle in the fridge scheme, which is brilliant. You know, you have a little sign on your door, a little green emergency cross, and in the fridge is a bottle with your Living Will (ADRT), with what medicine you take. So that, here's my tip, if you need the emergency services, you know, they don't whip you off to the hospital, or they don't resuscitate you because they know, you know, even though that may be their mission statement, that you've got a different choice in life and, and I think that's, that's been very helpful to have that information.

That's the first time I've heard that. That does sound like a good'

I'll show you the bottle [laughs].

It does sound good.

It's a Lions scheme, it operates countrywide apparently, and I think it's brilliant, because one thing on the carers' course we were told were, you know, that the emergency services their job is to, you know, keep you going. Well, that may not be what you want.

So and how did you found out, you found that?

Through the hospice. 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, where he, where he dies, yes.

Footnote' The 'Message in a Bottle' scheme is supported by many local Lions clubs.
 

Compared to other illness it's a relief to have some certainty and not be on a roller coaster of...

I think in a way Bill feels that he's not going to be stuck. Somebody in our group has had MND for, I don't know, fifteen years or so, is a young woman and is stuck, completely immobile, with twenty-four hour care, uses a computer as a communication device. And I think in a way we're going to be spared that. You have to kind of count your blessings don't you? On the carers' course there were three women whose partners have MND. The others were all cancer sufferers. And we've concluded to ourselves that it was sort of liberating to know that there was no pain, there was no ghastly intervention. There was no roller coaster of sort of hopefulness and disappointment, that it was, you know, the path was kind of clear. However many plateaus there would be, you know, this was the storyline. And in a way we were quite grateful for that. We weren't hoist on aggressive treatment and hopefulness or anything like that, and that was quite good, I felt. We've all felt it actually.