Yeah, ok, to have somebody in the house like this, the local health trust would come out. And they had a look at our house, and we owned our own home. And they were prepared to put a lift from the living room up through into our bedroom, then we would knock what is a four-bed and two-bathroom house into three-bedroomed, one large wet room. We thought about it and Nigel actually, his words were, he didn’t want to devalue our home for when he was away. He wanted to leave us with something that, you know, would increase the value. So we decided to put an extension on the back. So we were able to, we had a big enough garden, thankfully, and we put a larger living area at the back, all windows, all light, and a bedroom and part of the garage and a very large wet room. And, again, getting that done, the OT and so on were just, they helped us with the sizes and everything.

So it was just dealing with the practicalities. You know, we had to get rehoused when Brian became unwell. So we went from staying in a place with stairs. I had a lovely big four-bedroomed house, which Brian couldn’t get up my stairs sometimes, the stairs. So I agreed to just kind of give up my house, move here with Brian and we’re in a two-bedroomed flat. So you’re thinking well we’ve got four kids between and we’re going to have to accommodate care professionals staying as well. But fortunately enough, and Brian’s probably told you this, there was a flat next door which was perfect. And basically we bought that as well just for all the kids if that they wanted to come and stay, that there was enough room, etc. So it was just bizarre how that all happened.

I think you have to have a commitment from within your family as well. It is affected, the two teenagers, Stephen’s sons and my grandsons, they’re still teenagers. They have to walk into a home where one room is like an intensive care unit, and I have to say that they’ve all managed that superbly, including their friends. But nevertheless, it’s a very different environment, and without that support, I don’t think anybody would get the same value, the same quality of life without that backup.

I think overall the knock-on effects of the tracheostomy have been very positive. I guess the only thing is the need to have carers with us all the time, that is the downside. But the downside I guess, well, I accept that is the price to still be here, essentially…

But you need to consider your own circumstances and whether you can accommodate two strangers living with you 24 hours a day. You know, if we only had one flat, I don’t know what we’d do, we wouldn’t have space.

I think the other thing that’s difficult is it’s slightly different being looked after by one person and being looked after by two people, it didn’t feel like my house, my home anymore. Partly because, the care company, although they said they would recruit a dedicated team, they didn’t. My carers, as well as looking after me were doing rounds in the community. They mostly seemed to live on takeaways, so my house was filling up with pizza boxes.  

Having people in your home all the time, you can’t have an argument without people hearing. Which Fletcher and I, our coping mechanisms are, Fletcher is very positive, he looks forward, he doesn’t look backwards, and in that way, he helps us as a family deal with it. And we treat each other as normal. Because if we didn’t, well if I didn’t I would fold. So if you disagree about something you air your views, you know, but it’s very difficult to do that in private, particularly when someone, as in your spouse is a little bit deaf these days. There’s nothing wrong with my hearing but there is with his.

Disadvantages, none, people talk about having 24-hour carers in the house, not at all, they’ve become part of the family and they’re very good, and I’m able to –  No, I’m able to leave him if we have good enough carers, I’m able to leave him and go out.

I think that the positive impact has been we’ve got more care, so she’s had to do less of the heavy stuff, hoisting and so on. She’s actually able to go out and she knows the carers who’ll be here are very capable. So there have been quite a lot of positives for Gillian, and I think for our relationship, because Gillian was the main carer before, and now she’s not. And it’s hard to have a normal relationship on top of that relationship, so I think overall the knock-on effects of the tracheostomy have been very positive.

I don’t do any lifting or moving or handling and I don’t, I just don’t get involved. Because I’ve now got my P45 at the age of 73 they can’t put me on shift. And you see while I was doing the two hours in the evening which I was still doing as a backup not through night, they could pull on me and I couldn’t do it, to be honest with you I think what did it was the time at Christmas when it was between visitors that we had, my son and my daughter and what have you, my senior carer had put me on two, she said can you do two sleeping nights? Because she knows there’s a spare bed you see beside Fletcher and she knows that I wouldn’t not hear him. And I did them. But I couldn’t roll him, and I know rolling is meant to be with two people, but you just get that you have to do it, and I’m not the only one that’s had to do it and I was really struggling. I said Fletcher I can’t do this and I thought what’s the matter, it’s not that long ago I could have done it, and he said look Pat just leave me, and I said no, no I’ll try, if you’re uncomfortable I’ll try. And I did do it and I think this is why my brother said look pulling the duvet corner over didn’t do your back, it’s been waiting to happen.

I was running a reasonably successful business and I had to give that up overnight, I had to pass everything over to my son. And then from then on I’ve been almost, well I have been a full-time carer. And then I was, with the care agency and then there was something about, I don’t know, three or four months ago or three months ago they said to me you need to step back because I’m 71 and I’ve got a heart condition, I’m diabetic, I was getting up all through the night as well. And they said you need to step back from it all and this was on the Friday and on the Saturday her carer never turned up, so I had to stay up all night through the night with her because no carer turned up here. So from being told not to care for her anymore and step back from it, how do you do that with your wife in your own house, it’s not something you just don’t do anyway.

And, you know, the challenges around that, the physical, and we wanted to get him out and have fresh air and see the light of day. So you’re having to cope with, you had to carry an oxygen bottle on a wheelchair, specially modified wheelchair, the physical, the equipment wraparound, the tubes so we could get him outside. So we did get him outside in the carpark, not the greatest quality of life, but showing him that there is an outside world, and I wasn’t very good at going up and down pavements, that’s for sure, but we did it. We did get him out, and you just cope. You just switch on. There’s something inside. The strength comes from nowhere. And when you’re faced with adversity like that, you just can’t predict.

Make sure you have a family in this country unlike me, I don’t have anyone, for us we don’t have anyone. And respite for us actually, respite for carers because we don’t have any respite. Nobody really asks me, do you need, (becomes upset) I’m sorry. Nobody asks whether you, do you really need a break, unless I ask for it. Maybe their attitude is that she doesn’t ask, she’s managing. But we just get on with it and before you know it, it’s a year and another year, and you just haven’t had a break. But nobody says, are you OK?

One of the other things when living in the house and the trachy is the supplies. So I think that side, if you were struggling, I’m from an admin background originally. So I had a spreadsheet and on that spreadsheet I had all the phone numbers and who you phoned for what. We ordered trachy tubes from the hospital. We ordered the tubing and the water for the NIPPY (NIV) from [CITY]. We ordered medication from the doctor. We ordered certain supplies for the trachy from the district nursing. So those five alone, and that’s not covering everything.

There was a real shortage of these catheters, these tubes that I’ve showed you down there, to that extent that you need to make sure that you get all the supplies you need. Because this is life and death, if you haven’t got that you can’t suck the secretions out and if you run out, if you forget to order these and you can’t get them, it’s back in hospital.

Now we have a shortage of tubings, there was a national shortage of this long tubing. So we are now sharing with each other tubings. Who hasn’t got enough tubing? We would then put it on the group and then we will meet up and help each other, so all that’s been done by us ourselves with no help from anybody else…

Getting tubings I’ve had to ring around, write, email, chase, and that’s the worst thing, having to chase around and ring around, that is the most difficult thing, never mind the lack of relatives to support and no friends.  That doesn’t matter, it’s chasing around for things, who do I ring?

I suppose it makes me feel more sort of proactive really. I often think when he’s got something in his trachy, it doesn’t get stuck you just get like, he can feel if he’s getting a build of mucus he can feel that, and he indicates, non-verbally of course, we have little gestures so this means I need the suction. And I always say to him I’ve got this, I can sort this, I’ve got it. In we go, out comes the mucus. So I always say to him we’ve got a toolbox now of things I can do to help you; whereas before I didn’t have that toolbox. Now we have, so I suppose it makes me feel I’m supporting him a little bit more, I’ve got a toolbox now.

And, again, in the back of your mind is you’re thinking, you know, I’m not medically trained here and yet I’m now doing everything in this house that they were doing, a lot of it, in the ward. The only medical training I have was I was in the TA years ago as a medic, but like I can inject an orange and that’s as far as it goes, you know. But I think you grow in confidence as well…

You know your family, your patient better than anybody coming in and out because you know the colour of them, you know their breathing, you know their mood, you know infections and everything else, and as time went on, I would say we all grew in confidence with that…

I mean there was even one night I was talking and not paying attention, as usual, and Nigel, I was changing the strap and as I talked he swallowed and the tube started to come out, the whole thing. But even then it doesn’t faze you because they get you, when you go up to the hospital, to change the whole thing, it’s a matter of popping it out, having a look, popping a new one in. It’s a five-minute job, if even that. They have you do that at times too for the just-in-case moments like that. So I was able to know that it curves and you push it in slowly and it was fine. I just think you build up confidence with anything you have to do like that, especially the trachy.

I’m so grateful that I can continue to swallow, continue to communicate, because when I couldn’t communicate, not being able to talk was worse than not being able to eat. It’s really, really difficult, I was typing with the iPad but it was, yeah that was really tough.

The hardest thing is particularly now with my speech, because to follow the rhythm of the trachy breathing, people have to wait for my voice to come around, and a lot of people find that impossible. They leap in and anticipate when I’m going to speak. So I’ve had sometimes people trying to put words into my mouth or telling me what it is that I’m going to say. Wait a while, I can speak, just give me a chance.  

The biggest challenge for me is watching my husband’s body slowly breaking down, dying and knowing the man that he was, so full of life. So fit, so squeaky clean when it came to vices, loved his family, that’s what it was all about for him and keeping fit and seeing that being taken away from him when he’s been such a good man and a kind man and loved, so loved by friends and family. That’s the hard thing for me.

I found the experience of just life post-trachy far harder than I had anticipated. It always used to take me quite a long time to get up and dressed anyway, but the difficulty dealing with the trachy is it seemed to add a good hour onto the whole getting up procedure, and it was much more tiring. I was pretty active beforehand. It’s like the day when I got the call to go to hospital, I think I did about two hours in my wheelchair along the country lanes. When I went out afterwards, I discovered I’d lost the dexterity to drive the wheelchair for myself at all. I was suddenly completely dependent on my carers to move me around. I put that down to just having been lying around in bed and not using the muscles for so long. I know it would have happened anyway, but I think it accelerates the decline, the MND decline.