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Caring for someone with a terminal illness

Other caring roles

In addition to personal care (see ‘Helping with personal care’) there are many things that carers do to help and support their sick friend or relative, such as finding information, coordinating treatments or care, speaking to professionals, providing moral support and companionship, or doing housework. These things may not always be recognised as part of ‘caring’ but nevertheless are all part of looking after someone who is ill and can involve considerable time and effort.

Patients often wanted their friend or relative to help them find information and make treatment decisions. Some carers had been happy to source information and talk through treatment options but preferred to leave decisions to the patient, whereas others made decisions jointly. Simon had found it scary helping his wife to decide whether to enter a clinical trial because he wanted to do the right thing for her, but with hindsight he has mixed feelings about their decision.
 

Lesley helps her husband to make treatment decisions; she sources information for them to discuss...

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Age at interview: 66
Sex: Female
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So it’s a very fine balancing act and you try to make a decision, we make the decisions together. And I think a carer’s tripwire isn’t, is not to over influence in making that decision. You want to say, “Yes, let’s go for it.” But it’s not you who’s going for it. It’s your partner who’s going for it and they’re the ones who have are going to have to suffer the pain or, in David’s case, the neuropathy or whatever, the neuropathic pain that he’s in. And it’s easy to say, “Yes, I think we should go for it.” But not so easy then to have to stand whatever the outcome is. So it’s, you can be gung ho but it’s not a good idea. We so far, haven’t actually had that. I’m not good at stepping back but I have stepped back from decisions. I’m bad at that. I know I am and what I try to do is get all the information I can about the next steps and then lay them before David and then we talk it through. And I will go with whatever he decides to do because it’s him who’s going to have to suffer the consequences.  

 

The doctors asked Saba to decide which of two different chemotherapy regimens her mother should...

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Age at interview: 45
Sex: Female
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They sort of said to me that, well they said to her that they would, could offer her two forms of chemotherapy. One was an intense course that they would have to do at [name of hospital]. And that would mean keeping her in for a week of, of intense chemotherapy. Or there was a new drug that gem, gemcitabine that they could do where she came in as an outpatient. So she would sort of come in, I think it was once a week over a period of… I think it was a course of twenty or ten. And I would think after ten they would assess to see what impact it had had on the tumours. And that would be, would just mean that she could go in on a sort of weekly basis and still go home. But they basically said it’s our decision. Now I had no idea what any of this meant, nor did my mother at this sort of stage. And I wasn’t sort of… I wasn’t told at any stage that the chemo they were offering was palliative, or they may have mentioned that, but I didn’t know what palliative meant because I never had to deal with those sort of terms. Didn’t know at that stage that they, they weren’t offering chemo that could actually help the cancer. They were just trying to prolong her life for a slight amount of time.  

Some people moved in with their friend or relative to care for them, or moved them into their home with them. Those who cared from a distance would phone or visit frequently. Many carers accompanied the patient to medical appointments. Cassie was shown inside the radiotherapy suite so she could understand why her father found it frightening. After her mother had a deep vein thrombosis (DVT) Lynne had to take her to hospital daily for a blood thinning injection. Saba often took her mother to the GP’s surgery because the doctor wouldn’t always make house calls.
 
Sometimes carers felt they needed to call a health professional out to see their friend or relative at home or to call the emergency services. Heather had stayed off work one day because her husband had bad chest pain and she ended up calling an ambulance. Victoria called their community nurse when her husband was having a panic attack, and Lynne called the Macmillan nurse when her mother was in pain.
 

Henry dialled 999 after he found his partner Jane on the floor having a seizure; he was very...

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Age at interview: 63
Sex: Male
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And then two days before Christmas 2006, I normally would have would have been playing tennis. It was a Saturday morning but I, thank God I didn’t. I was upstairs wrapping presents, Jane was on the telephone downstairs, and I heard a thump, called down and asked, said, “Are you alright?” And there was no reply, so I went down. I wasn’t particularly alarmed. I thought she might have just dropped something, and found her on the floor having a seizure.

And now, I’ve never seen anybody have a seizure, well, a seizure, an epileptic fit, I think is probably what it was. I’ve never seen this before actually and I did think she was dying. She was, you know, shaking compulsively. She was frothing at the mouth. I was absolutely horrified. I hadn’t sort of, I’d had no warning of this. I mean I had, never occurred to me and it certainly never anybody said that possibly, the cancer could have spread to her brain, which, of course, was what had caused it but I didn’t know that at the time. So I was absolutely distraught by that, just the sight of seeing her there, something, you know, ten minutes earlier she’d been happily preparing for Christmas.

So I held her and dialled 999 on my mobile phone - thank God for mobile phones - and I have to say the ambulance service were brilliant. They were round very quickly, very, very sympathetic and, to my surprise, Jane was already beginning to come round when they arrived and was, actually, you know, even sort of joking with them a little bit and seemed to be okay. So went into [Town] Hospital again.
 

Running their friend or relative’s life as well as their own could sometimes be onerous, and some carers said they spent a lot of time on the phone, not only organising care or treatments, but arranging financial benefits, sourcing equipment or seeking solutions to problems. Lesley phoned the hospital while on holiday abroad to arrange her husband’s next blood transfusion.
 

Roger felt he spent far too long on the phone organising things to do with his wife’s care...

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Age at interview: 59
Sex: Male
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But the community, the co-ordination between community services is poor and who to talk to about community service is poor. The needs, the need is for a central coordinating clearing point. I need oxygen, I need to get some more tablets, I need something to lift the settee up so she can sit down. I need knives and forks with big handles on them. I need some incontinence pads. I want one telephone number, one point of contact and even if they are not the people responsible for doing or providing that service they are, should then be ones that know who is.

They should, I saw my job as taking care of Teresa’s needs, being her representative, being her mouthpiece as well as her partner and everything else. I spent far too long as a medical secretary ringing people who didn’t know what I was talking about. And saying, “Well I’ve just spoken to so and so and they suggested that maybe you can help or suggest somebody that might be able to help.” Too many phone calls, e-mails whatever trying to find who was the right person, who owned the particular problem. Not helped by the fact that while Teresa’s care was under one hospital it was actually being carried out and administered across four others, it didn’t help. Didn’t help at all.

Gosh ok. And all that time that you could have been spending with Teresa?

Yes, yes. She

If there’d been someone else there?

She, she’s sitting here. She needs, she wants something to eat. She probably needs her chest cleared. I need to sort of make sure that, that we’re not getting too low on oxygen because of the time it could maybe take to get a replacement cylinder. And instead of taking care of her immediate needs or watching the time and medication, I’m on the phone talking to people who really don’t really want to be talking to this guy because I don’t what he’s talking about and he’s nothing to do with us. Difficult.
 

Carers sometimes felt a need to act as an intermediary between their friend or relative and health professionals to ensure they received the best care. Reasons included' to try to speed up tests, treatments or see a doctor sooner; to ask questions on their friend or relative’s behalf; to try to prevent things happening that the carer believed were not in the sick person’s best interests; to ask for pain relief or for the sick person to receive more attention from hospital nurses. Theadora persuaded staff to allow her mother home when she was scared of staying in the hospital. Saba prevented her mother being given sedation when she wanted to remain alert. Jane prevented her husband having an x-ray when he was dying. When a Marie Curie nurse came to sit with Henry’s partner at night he had to ask him to stop making noises as it was disturbing Jane’s sleep. Later, when Jane was approaching death, Henry spoke to her doctors about stopping medication.
 

David and his wife Fiona had been told there would be a wait to see a specialist after her cancer...

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Age at interview: 43
Sex: Male
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To get referred and to get seen at the, at the specialist one wasn’t quite, although I might have suggested that it was like “Right, guys you go there, off you go, you’ve got, you’re in next day”. I actually phoned them up because we were told that there could be a wait. Now, having a wait didn’t seem like a very useful thing to do at all.
 
No.
 
I’m not a doctor but I could see the way my wife was deteriorating was quite quick. OK, a stent went in, the jaundice went away, but we were told that the, the reason for the illness was something different.
 
And it was a bad thing to have, very bad thing to have. And as far as I was concerned waiting wasn’t on the books. So I actually phoned up I, I, the, the name of the person who was the main specialist was, we were told, so I got through to his secretary, to try and find out whether things could happen a bit faster. And a rather deplorable thing is that, these people are under a lot of workload, and as a result things can’t happen at the snap of a fingers.
 
So was there a bit more delay? How long did you have to wait again?
 
Well, there, there wasn’t that big a delay because, having been told that it can’t happen, it then did happen. I got phoned up and said, “Look, there is now a place for you”.
 
Oh good.
 
So that was a huge relief. But I think the delay they were talking about was of weeks, and as it happened it was probably a week in total. But I felt that I didn’t have an option other than to try and push…
 
I suppose it’s push a case for someone but, because you’re so, you know, you’re so wrapped up on the one person in your mind you, but you can sort of step out of that and look in and go, well these guys, they’re, they’re having to deal with an awful lot and at no point do I think that they’re sitting there drinking cups of tea and going off and playing golf and things.
 
Do really do get the impression that they’ve got an awful lot on their hands and they have waiting lists because they can’t get through to people fast enough. But you on the, on the other side of the equation, you want to happen, you want it to happen yesterday.
 
Of course.
 
And I wouldn’t put myself down as a pushy person but I had to, I felt I had to be pushy. Which is an unpleasantness and an awkwardness within
A natural extension of this intermediary role was speaking on behalf of the sick person if their illness had damaged their ability to speak. Emma, whose mother had Motor Neurone Disease, said that being her mother’s voice had been the hardest thing.
 

Roger’s wife lost her speech through MND and found it immensely difficult to communicate with...

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Age at interview: 59
Sex: Male
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I think to a certain extent, I mean, you, one could understand that when a professional comes to visit a patient, to assess a patient they will address their remarks correctly to the patient. They do not necessarily know or have seen the condition before and understand how difficult it is for that patient to communicate. And the fact that the patient can’t respond… Teresa and I had developed if you like our own sign language and understanding. And I knew that very easily she could communicate with me that she was distressed, was having difficulties, didn’t want anything take over. And there were occasions when she found it just too difficult and too frustrating to try and communicate with somebody and wanted me to take on the role of that communication on her behalf. But the healthcare professional would on occasions not realising the situation try and stop me from speaking for her and insist that Teresa continued trying to communicate.

Obviously it didn’t take too long before the reality of the situation dawned, we’re dealing with intelligent people. But sometimes those few minutes that it took for the penny to drop did cause Teresa quite a bit of anxiety and stress. This was patently obvious at times when she was connected to heart monitor machines and all the rest of it. And you could actually see the effort that she was trying to make to overcome her difficulties and the frustration that because she couldn’t, that this was causing her. And at that time obviously she needed her energies to be concentrated on breathing, not on communication, when I was there to do it for her.

And to that end I stayed with her. She was admitted twice to hospital, two separate hospitals and in each case I remained at the hospital 24 hours a day for I think in one case it was a week. And the other case it, well it was nearly, nearly two weeks I lived in a hospital chair, because I was the only communication. If it was a simple thing like a cleaner, a carer, a helper anybody like that, just, “Do you want a cup of tea? Do you want a” whatever. When she needed, if she needed something, if she wanted the oxygen increased, if she wanted to go to the toilet, use a bedpan whatever, I was probably the only person with whom she could get that message to. And then I could obviously go off and get whatever help was required.
 

When the sick person was in hospital, carers visited frequently, some staying in the hospital or nearby. While much of the care in hospital was reported as good, some carers perceived that aspects of hospital care had sometimes been neglected (see Care in hospitals, hospices and care homes’) and they asked for things to be done for their friend or relative or did them themselves. Common areas of neglect were washing, feeding and toileting. After Susan’s mother had been in hospital for several weeks without having a bath, Susan washed her herself. Some people struggled to get the right level of pain relief for their friend or relative, and Georgina said it took three days to obtain some barrier cream from another part of the hospital for her mother’s bedsores. Saba had to ask a nurse to change her mother’s soiled incontinence pad.
 

Saba pleaded with a nurse to give her mother more pain relief but she refused; eventually Saba...

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Age at interview: 45
Sex: Female
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And it was so funny because that, that afternoon her pain just really increased. And we went to the doctors at the hospital and they gave her these drugs. But she was getting breakthrough pain. And I’d never seen my mother in so much pain at that point. But she was getting real breakthrough pain. And I was going, I remember going to one of the nurses who was doing her sort of rounds of giving drugs, and I was sort of saying, “Look she’s in a lot of pain now, you’ve got to give her something”. And she just said, “I’ll get round to her when I’ve finished everybody else”. But she was literally to the point where she almost, like, screaming in the ward and my brothers were almost like having to hold her down. And she just… this nurse just, I wanted to… it’s the first time in my life I’d wanted to just slap somebody around the face and I sort of said, “Can you not see how much pain?”. And I didn’t want… it’s not that I couldn’t say it because I didn’t want to say in front of my mother, that, “She’s terminally ill, she’s dying of cancer. And all you can, you know, it’s not like you’re giving out paracetamol, she’s not on your checklist of the next one to give out paracetamols or, you know, something for infection, she’s actually dying.”

And the irony of it was there were all these sort of little note papers stuck on the end of each bed about pain, you know, if you were in pain, tell us immediately. And yet she was doing nothing about it. And then she sort of said to me, “I’m not allowed to give her anything for the next four hours because I can’t give her anything in between.” And I said, “Yeah, but she’s having breakthrough pain, you can see, even I, not a doctor, knowing that she is having breakthrough pain at this stage. So whatever you’re giving her is obviously not working.” You know, “It knocks her out for a few hours and then she’s breaking through it.” I then had to just march down to the doctor’s office on, in the hospital ward and I sort of said to them, “Look, if you cannot manage pain,” I said, “my mother’s terminally ill, she’s dying, she’s going into a hospice tomorrow but if you cannot manage pain here then I’m going to have to physically take her out myself and take her to the hospice.” At which point the doctor’s like, “No, no, no, oh, let me get her files.” I said, “I can tell you she’s having breakthrough pain.” And he said, and then he sort of read it and he said, “Yeah, it seems that she’s having breakthrough pain.” I said, “That’s exactly what I’m telling you.” But as soon as I confronted him and said to him, “If you cannot manage pain then she shouldn’t be here. She needs to be back in the hospice now, not tomorrow,” it, it took that, for me to confront him about them managing pain for him to actually get some action.

But even then it took me an hour to wait for somebody to be able to come and actually give it to her.
 

 

When Lesley’s husband was in hospital she felt the nurses neglected him, so she would clean him,...

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Age at interview: 66
Sex: Female
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I found his treatment absolutely appalling, totally and utterly appalling. The lack of care was obvious and scary, for me, because I didn’t trust them. I didn’t trust them for me not to be there, so I was there a lot of the time, changing his bed, changing his pyjamas and, generally, looking after him. And when challenged, which I was by nurses on the ward, “Why are you doing that?” And it was just quite simple, because nobody else is doing it and he’s my husband. I love him and I want him to try and get out of here because I actually, just didn’t trust them at all.

But you’re having to make sure that he’s clean and dry and warm and looked after and fed and, and that’s every, ‘mum/wife’s job’ and it didn’t seem any different to me, just because he happened to be in hospital and everybody else was studiously ignoring him that I shouldn’t chip in and make sure that he was okay. It wasn’t appreciated in the hospital. They didn’t like it but it didn’t bother me that they didn’t like it. It wasn’t my concern, that was their problem, and I did it.
 

Hospital visits from the carer served to provide comfort and moral support as well as practical support, as did accompanying the patient to outpatient appointments. Some carers said how important they felt it was just to spend time with their sick friend or relative to keep their spirits up or bolster their confidence and provide companionship or reassurance. For instance, Janet said that she visited her partner Chris every day in hospital ‘to take her things that she might want, to give her comfort, to give her solidarity, to show that I really cared about how she was feeling’. Val said she used to read to her husband. Heather said her husband felt lonely when she wasn’t with him. Sue’s father had dementia and she spent one evening playing card games and listening to old songs with him to stimulate his mind. Katie spent a lot of time with her sister-in-law in her bedroom to give her companionship and reassurance. Where possible, some carers would take their sick friend or relative out of their usual environment for a change of scene to boost their spirits.
 

Georgina’s mother enjoyed being out, so Georgina took her out of the hospital or hospice for a...

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Age at interview: 47
Sex: Female
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If I wanted to take her out, I brought her home for weekends, well, not for a whole weekend, but for a for a couple of hours I’d try and bring her home because I still had hopes, at this point, that she would come home but because of the dementia I didn’t want her to forget home.

So I’d try and bring her home at least once a week so she could sit in her chair over there for a couple of hours, watch some television, have a cuppa, just be normal.

Just pretend that nothing existed except her normal life. When the autumn came we went for a drive round all of the, the areas like [Place name] where the trees were just turning and she would be going, “Oh, beautiful.” And we could do that there. They would let us take her out, bring her out, take her out for a cup of tea and wheel her all over the place. In the good weather we’d go wheeling all ‘round the hospital, go up to the cafeteria for chips and right round the outside site so she could get fresh air. They’ve got a lovely little garden, courtyard gardens area, and I could wheel her all round

But then we did we did that for fun. You know, we’d go out for a couple of hours and I’d be pushing and we’d have an ice-cream out somewhere and I’d push back, and I mean sometimes we’d use the car, sometimes we’d just use the chair, sometimes you’d have a combinations, sometimes you’d go on the bus. It was all about… it was about fun. It was about not allowing her to be, I mean she was someone who loved people, loved socialising, loved going out and I certainly wasn’t going to let her have any of that taken away from us. Some weekends I was busy. I needed to stay at home and do things and she was quite happy with that too. Sometimes she’d just look at you and she’s, I’d say, “I’m just, I just need to go shopping. I only need to go Tesco’s, get some bits.” “Oh, can I come with?” “Of course you can.” And then we’d be out and I’d think, I’d say, “Oh, Do you want to go for a ride?” “Yeah, where?” “I don’t know. Let’s just point the car and go.”

Because she enjoyed being out and it didn’t matter even if you just, even if it was a miserable day, you just trotted round a few roads, went into the countryside, watched the rainfall, came back, found somewhere for a cup of tea, sometimes not even that.
 

Other things that carers did included keeping the household running - particularly challenging for those who had two households to look after – including all the housework, shopping, gardening and coordinating visits from friends and family. Katie looked after her sick sister-in-law’s daughter as well as her own children. Poppy said she became her father’s ‘diary manager’. Emma walked her mother’s dogs; she also took on the unexpected role of looking after her mother’s live-in care workers, most of whom were young foreigners who had no independent means of transport. She found herself doing all their shopping and supported them emotionally when they had personal problems.
 

When Lynne’s mother started to go downhill Lynne took over all the cooking, shopping, cleaning...

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Age at interview: 53
Sex: Female
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So at what point did you start having to do things for her?

Really from Christmas time. She was starting to really go downhill, and she was getting forgetful as well and I said to her, “Look. Don’t cook. I’ll do.” I’d already said to her, suggested that I’d cook anyway but I said to her, “Look. Leave all of that. I’ll do it. I’ll do it.” So I was doing all her cooking. I was doing her washing. I was having to do, make her bed and change her sheets on her bed. Do all the cleaning because she used to say on a Saturday, “No, I’ll clean the kitchen. I’ll clean the kitchen.”

But she couldn’t really do it but we just let her do it and then, when she was sort of resting, we’d have a little clean round when she wasn’t looking or when she didn’t know because we didn’t want to upset her. So really properly looking, I mean probably for the last year or so I will, I was doing all the shopping, all the washing, all the gardening because she couldn’t it. She just couldn’t do it and she loved her garden but just couldn’t do it.
 



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