Caring for someone with a terminal illness

So I took her into the hospice and they were just such a lovely, lovely kind people and the nurses came over and they got my mum comfortable in bed and took her temperature, were asking her questions but my mum never wanted to make a fuss. And I said, “Oh, hang on a minute. She’s also saying that it hurts when she eats.” This had been going, ongoing for three over three weeks. And the nurse opened her mouth and looked in her mouth and said, “You’ve got thrush in your mouth and your throat.”

So I am now extremely angry because my mum’s been at home, she’s had a so-called nurse coming in twice a week telling the nurse she can’t eat because her mouth is sore, nobody bothered to look in her mouth. And so within half an hour of being in the hospice we’ve had thrush diagnosed. They’ve given her an injection for painkiller. They’ve given her stuff for her to take and put in her mouth for thrust. They’ve taken her blood pressure and everything else and made her comfortable and then they, after about a couple of hours, when she was comfortable and settled in, they said that I should go. So I went off to work.

But I’m sure I’m convinced that if the thrush problem had been sorted out earlier, she then would have been able to have eaten. I mean literally, she more or less starved to death. Had she been able to eat, she probably would have lasted longer. She would have been stronger.
 

And above all, there were the District Nurses. They were absolute amazing. They were lovely. They came in, and they were friendly and chatty and they became part of the household, you know. So they, they were sort of part of the whole medicalised, they didn’t feel like part of the medicalisation of the process, they just felt like friends coming in, once we got to know them. And they were cheerful and very, very helpful. Always ready to provide us with whatever supplies, you know, medical supplies, we needed. Nappy pads, which Di had, you know, bedpans, everything that we needed. And they were so immediately responsive to that and they, they were just great. They were, they, there was no kind of hint of bureaucracy about them which we got even at the hospice. You know, because the, the number of kind of rules now in terms of what can and can’t be done and we came up against this everywhere.  

The one person I have missed out of David’s equation, who during the time he was in hospital and then when he came home has been absolutely vital, is our district nurse. She was as, just an amazing support. She was a rock really and she did help and she was the one who would nag me to say, “Have you had any time off this week?” And say, you know, “How’s it going?” With me and she would she would make sure he was comfortable and she would come and talk to me and so the district nurses are, I’ve found them extremely good.  

Did you feel that the care was organised or were you the sort of at the centre gathering bits as you could?

I think you have to be quite proactive yourself. You have to know what to ask for. The other thing is of course, people will tell you things but it’s a question of if they say this only once it’s not, not necessarily going to get, you know, you’re not necessarily going to click, “Oh, actually. I do need that.” You know. I made lots of lists and the district nurse liked quite like encouraged me to do so, so I didn’t feel I was sort of being bossy or, or anything. She was very, very good about, you know, offering and she did offer things I hadn’t thought of, which helped.

So just talking about it seemed to sort of bring that out. So I think the visiting was important. The hav…them having time to talk to me was important you know, and also giving me time to sort of gather my thoughts about what, what we do next. And I did ask a lot of questions and you know, I did try and I didn’t want to, you know, I tried to make best use of the contact times. That that was my aim because I didn’t want to always be on the phone about this, that and the other so I did always look at other ways of getting answers if, if I felt I’d been overburdening one service. Yes.
 

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.
 

Were you aware of support you could have in caring for her?

The Macmillan nurses were very good at speaking to me separately. When they came they were obviously here for Sarah but there were a couple of points where I, one particular terrible weekend we’d had with, with out of control pain and Sarah had got the point where she said she couldn’t do this anymore, and I rang the Macmillan nurses about that and they realised how upset I was. They then I kind of, we kind of had a second they they’d see Sarah but they’d also talk to me about stuff and that I found that very useful.
 

The, at this point, when it was clear to all of us except Jane that it was terminal, we got in the Macmillan nurses, and they were absolutely brilliant. They did all the things that we weren’t sure about. Sorted out everything, they, they arranged for Jane to have a new bed brought into the house, which sort of she could press buttons and sort of lift up and all that kind of thing. They arranged for, I’m just trying to think what else they did. They, they just took over and all the sort of admin side of it was sorted for us. They knew exactly what to do. They were incredibly nice people, and I mean I can’t fault them. They were absolutely brilliant.

Did you feel that you were cared for at all in your role?

Well, only in the way that people dealt with me in a very, very sympathetic way, yes. Again, I’m going to go back to the Macmillan nurses, who were I found a huge source of strength for myself as well because, just because of the way they dealt with me and talked to me and made life seem normal, in a way, in a funny way. They were so sort of straight-forward and kind and practical.
 

In the meantime Iain Rennie Nurses had come in, into our, into our lives. This is another charity that’s a wonderful organisation and really they are there to nurse, well it’s Hospice at Home really, people who want to die at home. And they, they sort of monitor the drugs and, and, and they administer a, a drug that’s called ‘just in case’, that, that, that’s the name that they call it and really it’s just, I think in the latter days of your life they just inject this drug to relax you and make you, more restful, and relaxed, and we had all these things in place.

So we would, we had Iain Rennie really to, because they, they know more about dying than doctors do, and they see that the patient is comfortable and all the stress is taken out of everything so they can relax the patient by drugs. They can also fast track prescriptions. They phone the doctor up to say what is needed. They fax it to the chemist and the chemist will deliver it, and if they don’t deliver it then Iain Rennie will. They’re a twenty-four seven service and they give good advice. That’s another wonderful organisation. So we, yeah we were very lucky.
 

So yeah, it was just this sort of very, very strange lifestyle really of people. Literally in the middle of the night, because sometimes she would have, she wanted her pain relief just before bedtime, so sometimes we would be in bed, and I’d have left the front door open, and the nurses would let themselves in. They’d come upstairs, knock on the door, I’d be in bed with Karen, she you know, she had all sorts of things propping her up by this stage and they’d come in and give her, her pain relief and let themselves out.

That was an injection?

Yeah. Yeah.

Did they ever suggest that you might give her an injection?

No. No.

But they’d, they’d come whatever time you need?

Yeah.
 

Very difficult having someone living in your home.

It really is very difficult, especially when it’s small, and you’re someone who, like me, I’m hands on. I have to do things. I wanted to do everything I could for my mother and, you know, I don’t really want people to feel redundant but what I really needed them for was not live in but to be there while I was at work because, at that stage, I was still working.

If I’d been able, I know it’s impossible, if someone had said to me, “You’ve got three more months with your mum.” I’d have told work, “You’re not seeing me. We’ll, we’ll sort it out. I’ll go on unpaid leave. I don’t want to be here.” And I wouldn’t have had live-in from the start. I’d have done it myself from the other way but because I was working all things were out and I you can see this is where I get frustrated and cross and this is where, you know, all the mental repercussions come and I keep saying, “If I had that time again, I should have not worried about work and I’ve been so selfish.” I should have just said, “Forget it. I’m not going to work.” And I regret that decision. I regret trying to keep everything going because what did it achieve?

Me getting frustrated because I had someone living in my house who wanted to do everything her way and by her rules. I mean she was washing my dish cloths in bleach and washing the floors in bleach and I was saying, “Don’t do that, please, because, you know.” “Well, this is what I’m taught to do.” I said, “Well, yes, but they’re old tiles and I don’t think it’s good for them.” “Well, what do you do?” I said, “Well, I don’t use bleach.” And I said, “And I’d rather you didn’t keep washing the dish cloths and everything in bleach in the kitchen because this is where we’re preparing food. This is food that’s going to go to my mother and if there’s an accident, bleach is very dangerous.” And so she wasn’t happy with me. She wasn’t happy, I don’t think, with the fact that I wanted to do so much myself. She, you know, made her own food and ate her own meals separately. She would want to, I mean, and it’s just very difficult, you’re not a family and, you know, you’re very aware of having someone else there all the time. And I was on egg shells in my own home.
 

And subsequently as her condition deteriorated and you did you have to do more? Did you have find that caring took over more times?

As a matter of fact, I then went to an agency to see if I could get some help but the trouble with these agencies is they get people from Australia and South Africa and all places like that and only for two weeks because they reckon that two weeks people can just about put up with you and if it’s a nice job then it’s pleasant and if it’s not a nice job then well, it’s only for two weeks. And that’s fair enough, but for Alzheimer’s it’s a no-no because they really need somebody constant and so the agents really are not a great help for things like that. But I can I think for general illness they’re probably, it’s very good but for Alzheimer’s and certain older people and things they like having familiarity. So hopeless, you know.

And so it was beginning to affect my husband and we couldn’t go out with friends and so I, we had to try and get babysitters and things, and then I thought, “Well, we’ll get some care.” And I did get a wonderful Polish girl, who was an angel. She’d worked in [town] in a in a nursing home so she had great understanding and she came across and it was just as if heaven had sent me an angel and she was terribly kind and very jolly and very religious, actually, very religious person so I knew she was going to do her best. It was rather nice really.
 

It was like the most vulnerable people being looked after by the most unskilled people, that was the thing. I mean things like you’d want your mum to have a bath at least twice a week, and things like in the care plan it was that she was to have a bath on certain days of the week, but like an inexperienced carer would say things like, “Oh, would you like a bath this morning, [mother’s name]?” My mum would say, “Oh, no, dear. That’s all right. I’ve had a wash.” Which she hadn’t and of course, the carer, young carer would just think, “Oh, that’s okay then. She doesn’t want to have a bath.” But you can’t do that. It’s and the more experienced carers would like run the bath and, you know, and be able to say, jolly her along and say, “Oh, that’s, you know, got the bath ready for you, [mother’s name]. You know, I’ll help you with this, that.” You know, it’s skills isn’t it? Having the skills to, to work with people. 

And it all happened very quickly really. We ended up realising that Mum was getting so worn out, so we, through the help of social services, got a, a care agency in. And they used to come in for one hour in the morning and one hour in the evening. The morning was supposedly to, Mum would get Dad up, because he’d get up quite early, was supposedly to support Mum in the personal care of Dad, but it was quite difficult sometimes. The agency only had female staff at the time, and Dad was quite resistant to having them do anything with him. He was a very proud man and I think, you know, dementia I gather, only sort of seeing my dad with it, you get pockets when you remember what’s going on, and on those moments he wouldn’t let anybody touch him. But luckily, a young man joined the agency and for four or five months he was my dad’s main carer, when he was on shift, and that worked really, really well, he related to him. And we managed to get Dad shaved and we had a bath seat put in. And that continued probably until about September. 

So yes, Mum was at home deteriorating, slowing, with one carer living in 24/7 and we got to know the carer very well. She, on the whole, I think she did a really good job. She gave Mum lots of dignity. I think that was one good thing that the carer, all the carers did. They did the good, the bad bits without making a fuss, without, you know, they only told me when there was a big issue that I needed to ring a doctor about or something. They were always very gracious and said, “Okay, you know. You must go out the room now.” We all just went. We knew. So from that point of view, I think without exception really, although I’ve probably known twenty carers now over the last two years, without exception they all did that. They didn’t all do all the good things right, but that’s one good thing they were all taught to do, and I think they all did that brilliantly.  

So I had to go and have another operation and they put us in touch with another carers association and they were lovely. They came in. They we chatted, chatted with Terry and, and they sent in carers and from then on, the carers were fine. They, they really helped. I think the first lot was because it was all an emergency perhaps, nothing was set up. By the second lot, we’d got it all set up. So yeah, from then on Terry had a carer coming three times a day and also respite care that I could actually go out for a couple of hours like whether it be to visit my daughters or just go and do a bit of shopping and that was nice. And Terry was happy with that because him and the carer got to know each other and it was they made a point that it’d always be the same carer, so it wasn’t just different coming in and out and that made a lot of difference and we, he became quite a nice friend in the end as well, yeah. So...

So was that second carer organisation, was that the charity or a private company or something as opposed to social services?

No, it was it was social services but it, I think it was a company they actually used.

Okay.

Yeah, that it was it was still done through the doctor and social services but it was a company that they used. Yeah.

So they came from a different place.

Yeah.

Than the original ones.

Yeah. And they were really lovely.

And this was a male carer you had.

Yeah, I did ask if it would be possible for Terry to have a male carer because I was thinking of him like and it’s like dignity and like being proud and I just thought it’d be important to him to have a male.
 

So we opted for the direct payment system to try and employ somebody ourselves. Unfortunately what you have to do under the system is you actually have to set yourself effectively as a small business and do the PAYE and everything for the people you employ, the carers that you, you employ, an anti-fraud measure that the government has introduced. But it does make a hell of a lot more difficult. We were, there’s a partner organisation in the County which will do it for you for a fee so we opted for that because there was no way that I was going to sit down… I was going to say at the end of the day. There wasn’t an end of day you know and, and start working out PAYE and learning how to do that. So we opted for that. But we still had to do a lot of accounting, keeping hours, keeping records of, of annual, of leave that was entitled and all this sort of thing. So it was, it was actually quite a burden to do that. But we felt that because social services would use an agency and we’d, we would probably get a load of different staff in variable calibre, calibres, we’d try to find somebody ourselves and that was very difficult. It was very difficult to find anyone really, and certainly it was very difficult to find somebody who we could trust.

But we did eventually find someone, both long after it was really needed and I was really absolutely in the ground by then, just day and night you know sort of struggling on. I felt dizzy a lot of the time. My head was buzzing from lack of sleep. I was getting about five hours of sleep a night. And also during the day and looking after Di and knowing that she was going to die you know.

So we just had to struggle on. We went back to social services and we got an agreement with them, through the agency, that they would restrict the staff they said to two people that we felt were reasonably competent. One was actually excellent, the other was, was quite competent I felt. There were difficulties there that I felt but of course being agency staff they weren’t allowed to lift. And the flat, the tiny flat we were in over the other way we couldn’t get a hoist in, it was too small. So I had to continue to be available to do all the lifting, day and night. So I, I got more sleep but I couldn’t, get you know enough.

And then came Christmas and for eleven consecutive nights when we were promised agency staff, they didn’t turn up, at the last minute. There was nobody or we got a, or we sometimes got a telephone call saying the person had called up. But sometimes just nobody turned up. And I was I was just staggering around really, just trying to cope. But in the end in the end we found two carers who we employed directly who were good and two agency carers who were trusted.