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Caring for someone with a terminal illness

Impact of being a carer

Becoming a carer for a family member or friend can have a considerable effect on the lives of those who take on this role. Medical professionals and other family members are likely to focus their attention and concern on the person who is ill, so the carer can become “the one in the shadow”, as Lesley put it.

 

Caring for somebody around the clock and having to watch them suffer pain without being able to...

Caring for somebody around the clock and having to watch them suffer pain without being able to...

Age at interview: 66
Sex: Female
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David has a very big family and I am very lucky in that one of his sisters plays centre of the roundabout and I just give her the information and she makes sure that everybody else gets the information and she always asks how I am, which is also good. The carer can be the person in the dark, in the shadows, bumbling along at the side of the patient but for me, the carer’s role has always been the one who takes the information and then takes it away and does something with it. I have to be active. I have to be proactive. I have to be in control of my bit and helping David to be in control of his bit as well. So it’s a double edged sword really and can be very fraught. It can be, it’s extraordinarily, emotionally, draining. I found myself, when I went to the cancer conference last week and it was held in Liverpool, and those of you with a keen ear will have heard that my accent probably comes through occasionally. I am a Liverpudlian and I just hadn’t realised how strong an umbilical cord there is between me and that city until I got there and burst into tears. There you go. So it can be very, very, very emotional, draining, in fact, of your all your emotions, your strength. You can’t keep going. You’ve got to have a break sometime and when they are as well as David is with his cancer, I think the term, living with cancer, is extraordinarily appropriate but you don’t any, the carer doesn’t get any support because he looks, seems, acts, as though he’s okay. And so, therefore, what caring are you doing? You know, well, I consider myself to be a bit of a pit prop, holding him up, but sometimes I need somebody propping me up as well and that doesn’t very often happen.

 

So it can be quite difficult and living with somebody twenty four seven, can be fraught with shall we say, hiccups along the way [laughs]. You really want to scream sometimes, “Why don’t you?” Or, “Why can’t you?” And you can’t shout at them because they’re ill aren’t they. And you’re not ill, apparently. So that can be difficult too but it’s rewarding. I find it rewarding.

 

It’s very difficult watching somebody being in pain and neuropathic pain is inordinately difficult to deal with. And there are no painkillers that will deal with neuropathy, none at all. There are ones that you try but they don’t deal with it and so watching somebody being in pain permanently, is actually, extraordinarily difficult and you know you can’t do anything about it. It’s no it’s no good saying, “Oh, I’ll go in the kitchen, get you another pill.” Because there isn’t another pill to get. So it can be very, very, very hard indeed.

 


Depending on the support needs of the cared for person, caring can be hard physical work, involving lifting, cleaning, personal care and disrupted sleep. Peter, whose daughter Olivia had Motor Neurone Disease, described how he and his wife contravened health and safety regulations when lifting her onto a CAT scan bed, but said that “When making decisions about your own health versus your daughter’s health, there is no decision – you just go ahead and do it.” They found that installing a small radio system between Olivia’s room and their bedroom helped immensely when looking after their daughter’s needs at night times. Many carers had their sleep disrupted and many talked about being exhausted most of the time.
 

Being a carer means you have to be strong even when you don’t want to be. Emma resented her...

Being a carer means you have to be strong even when you don’t want to be. Emma resented her...

Age at interview: 44
Sex: Female
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So anyway, going back to going to the hospice, I remember the day so well, because we got there, I think, I remember pushing her in her wheelchair, and I remember the consultant just saying, you know, within the first five minutes sort of telling us, you know, asking us both how it was. And my mum sat there and said, “It’s all right, it’s all sorted”, you know, “I’m coping”. And I remember me losing the plot completely and running out of the room in tears screaming, “It’s not”, you know, “I can’t do this”, which was horrible because I always want, you know, and I have for three years always supported my mum, you know, two hundred per cent. Being an only child that’s, you know, what you do. But I remember at that point that was a real big issue because I was admitting that I couldn’t do it anymore. And she should have been doing the same but I think, you know, maybe for whatever reason she didn’t. I then remember sitting in two separate rooms, like it was yesterday, for what seemed like ages, while the consultant talked to mum, and then came and talked to me. And we had this agreement that we’d, mum would go home for a few days but then mum had, eventually, agreed to go back to the hospice to spend a few days there to be assessed properly and give me a chance to sort of regroup really.

I was having marital problems with my husband, who wasn’t particularly being supportive. So I was doing most of the visiting by myself really, and interspersed with taking them and working full time, which looking back I still don’t know how I did it. But I think something takes over, like adrenalin or something, because you know you’ve got to.

And the one thing I think you have to be through the whole journey is so blooming strong, when you don’t want to be. That was really hard to do, because you didn’t want to say, “This is shit.” And you couldn’t, because all the medical professionals, you had to fit in with them. You had to give them the information because, you know, my mum couldn’t talk to them, it was me that did it. So that was the hardest thing. It was almost having them all coming at you, you know, and you had to deal with it. There was nowhere else to go. But, looking back on it, they all did a quite a good job but there were times when I didn’t think they were, because maybe I wasn’t either, you know. It was, it was a bad time and it all went wrong. There’s so much else I could tell you and so little, you know, I don’t know.
 

 

Heather used to worry about whether she would find her husband still alive the next morning....

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Heather used to worry about whether she would find her husband still alive the next morning....

Age at interview: 66
Sex: Female
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I think our consultant, or my husband’s consultant, was somewhat reluctant to actually say, “This is terminal.” But I think it was me really that insisted and as I sort of knew him slightly, I felt I was able to say, “Well, is this terminal? Is this pulmonary fibrosis and how long has he got?” And he was very straightforward and he said, “Anything between four and five years.” And, in a way, it was easier. It was easier to know that this had what is what we’d got left and really I wanted to make the most of it but I think my husband gave up. But it was easier to know than to keep wondering, “Is is it this? Is it terminal?” It was much easier to deal with when we actually knew.

A sort of a timescale but, of course, he went way past the timescale that he was given. So once that time was up, it was really strange because I kept thinking, “Well, he shouldn’t be here now.”

“He shouldn’t be here now.” And because it was getting very hard I began to think, almost think, “Well, I wish it would happen because life is so awful for both of us.” That I didn’t like to see him so distressed and he didn’t like to see me so distressed and it was just really very hard to accept that perhaps it’s better not to know how long someone’s got. I don’t know really. It.

May or it may not be but I think if you’re given a timescale you expect to go either before then. You don’t certainly don’t expect to go past it.

Did you feel you were under a lot of stress?

Yes. Yes, I used to come down in the mornings if he hadn’t called me and I didn’t know whether I was going to find him dead or alive and that was absolutely awful.

For the last two weeks of his life he was in a nursing home and I feel, had I known it was going to happen, [tut] I might have kept him at home but you don’t know do you.
 


For many people we talked to, caring was a round the clock responsibility. Several had moved in with a sick parent or brought them into their own home. While close proximity to their relative or friend made some aspects of caring easier, it also meant that there was little opportunity to ‘get out’ or ‘switch off’ from the caring role. Susan described caring for her mother with dementia as “a routine, a wheel you have to keep going”. After putting her mother to bed, she would often have an early night herself to cope with it all. Val, who looked after her husband with kidney cancer, said her own health deteriorated during her time as a carer but she could not afford to pay attention to the symptoms she was experiencing. Even after her husband’s death, the feeling of ‘I can’t be sick’ stayed with her. Lesley found that being proactive and trying to stay in control helps her. Heather took time out to go swimming when she could. The support of friends and paid care helped Dick to manage his caring role.

Taking on a caring role frequently triggers changes in family relationships, including that between the carer and the sick person. Some of those who were caring for a sick spouse said they felt guilty about having a normal row about normal things when the other person was so ill. Constantly having to make allowances is difficult, and not everyone took kindly to being cared for, but caring for their relative or friend had also enabled many people to become closer (see also ‘Changing roles and relationships’).

Lack of sleep was a concern, particularly for those caring for a person with dementia. Sue, caring for her father with dementia, described how she and her mother and sister would take turns sleeping in his bedroom to make sure he would not get up and walk around the house at night. Heather admitted to feeling irritated with her husband Bill when he called for her with a small task when she had just managed to nod off for a few minutes after an exhausting night.

Coordinating looking after their ill relative or friend, with their everyday lives can be challenging. While many carers had retired, or suspended or reduced their work to perform the caring role, others continued in full-time jobs. Several had to juggle caring for their sick relative with looking after the needs of their own family and children (see ‘Juggling caring with other aspects of life’).

Cassie put her own needs aside while she was caring for her father during the nine months that he was ill. Heather described how she sometimes would miss meals because by the time she had fed and settled her husband her own food had gone cold. Cassie would have liked to ask her father how he felt about dying but respected his silence when the doctor told him he’d only have a few days left. Some people felt very alone in their responsibility of carer, especially if they were a single child or an elderly spouse.
 

Heather felt exhausted most of the time and her own wellbeing was affected.

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Heather felt exhausted most of the time and her own wellbeing was affected.

Age at interview: 66
Sex: Female
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How were you emotionally at that time?

Sometimes I coped really, really well. It was the nights that, it was the days when I hadn’t slept at night because he’d called me a lot that I used to sort of lose it a bit. I used to sit in the chair and I’d doze off and he wouldn’t really appear to know that I’d dozed off and would ask me to go and get something trivial and I think, “Oh, no. I was in a lovely sleep then.” [Laughs].

But no, it’s I think I was exhausted. I think I was really exhausted most of the time because, although you’re asleep, you’ve still got one ear, Bill had a bell and I had the receiver.

And he used to call me. I used to give him his meals first and as soon as he’d finished he’d call me and I wouldn’t have finished mine and then I used to say, “Bill, will you please just wait a second?” He would say, “I can’t bear this plate on me.” So I used to end up not eating my meal because I’d have to come in here and take his plate away and then get him settled again and then mine would be cold and if people were here they used to get cross with him and say, “Bill, let her have her dinner.” And then I used to get cross with them because I thought, “Bless him.” You know [laughs].
 

 

Being responsible for her father’s life during his final days was a heavy weight – sometimes...

Being responsible for her father’s life during his final days was a heavy weight – sometimes...

Age at interview: 26
Sex: Female
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He also decided never to go back to hospital for anything and not to be resuscitated. So any of the sort of equipment, the medical equipment that had been left there was taken away and so I’d say it got more intense to the point, where I think I definitely felt more responsible and scared because I thought, at least, before, although I didn’t like it when he was in hospital, at least before if I was scared or worried I could have taken him to the hospital and gone, “I’m really scared. I don’t know what to do.” But at this point I thought, “Oh, I’m really responsible for his life. If I get something wrong, I could kill him” was how I felt, and my mum and I had this very sort of stringent way of how we gave his medication every day and we had highlighters and post-its and everything to make it really organised and particular because there was this fear of getting it wrong and if we got it wrong, then we’d be the reason why he died. So I think it changed to the way that it was even more intense to make sure that he was okay all the time because there was a fear that we’d be responsible somehow or feel responsible for his death.

Sometimes it was so overwhelming and I remember standing over him sometimes, like changing the bed and just being in floods of tears because it was almost like I was full to my neck with all of this emotion that I felt and just all I could do was just let out a few tears and it would just about alleviate it for a minute and then it would go buried again. But there was once or twice when I had to just call I’d call my mum and I’d just have to leave and just go into my room or something for a bit or I’d go and see a friend for an hour but not long enough, I don’t think.

So I, yeah, it got, he got progressively worse and worse and worse and the day before he died, he had a stroke when I was, he was on the commode at the time. I was sat with him and he called me to help him and so I went in and I was just getting everything ready, getting my gloves on and this routine that I had to a tee of getting him all sorted. And his arm just flopped and he fell, nearly fell off the toilet and I remember getting really cross with him because I thought I just thought, “I can’t cope with this. I just need you to just sit still.” And again, it was like the child sort of messing around and just wanting to say, “Just sit still.” And I got really frustrated with him and I bent down and looked at him and I saw that one side of his face had fallen and I remembered those adverts where it says, you know, “If you’ve had a stroke, this might happen. Your face might drop, your arm might drop.” And I thought, “Oh, God. He’s had a stroke.” And I just had this wave of guilt that I’d got angry at him and sort of stood there cuddling him for a minute, calling out for my mum, who was downstairs and couldn’t hear me. And just that was probably the moment when I felt the most alone because I just thought, “There’s nothing I can do and he’s my dad and he can’t even help me and I’m calling for my mum and she’s not around.” And I think that was when I felt probably the most alone, that this is too much. I can’t take any more.
 


Although caring for their friend or relative was difficult at times, some people also talked about their positive experiences of caring. Katie said it had been a privilege to support and care for her sister-in-law when she was dying from cervical cancer. Georgina said it had been a joy to look after her mother who had dementia and bowel cancer.
 

Dick describes caring for his wife as ‘a labour of love’. It was a wonderful experience, even...

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Dick describes caring for his wife as ‘a labour of love’. It was a wonderful experience, even...

Age at interview: 55
Sex: Male
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And we got very close. A friend actually asked Di she said to her in the last few weeks, “It must have been a terrible year”. And Di said, “No it wasn’t, it was actually a wonderful year”. The comment she made, she said, “In the last year I’ve actually learned to accept love fully for the first time and it’s just been really wonderful”. And it was the same for me, it was, it was painful - very. It was difficult. It was exhausting, utterly, utterly exhausting. I’ve used the word exhaustion in my life before but I never really knew the meaning of it until then.

And as the muscle wasting continued, she couldn’t get comfortable wherever she came into contact with the physical world it was painful and uncomfortable for her. She needed turning at night regularly because she couldn’t turn herself. And so I would have to be available all through the night to get up several times to turn her and take her to the toilet.

And at a certain stage it was too difficult for me to cope on my own so we went back to social services and they started to get a care package in. And we had the option of either just allowing social services to send agency staff so many hours per week or to find people we could employ ourselves, on the direct payment system.

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.

And so it was, it was a labour but it was a labour of love, with no positive end in sight.

And Di was remarkably brave. As I said she was quite extraordinary. There was no point at which there any 'why me's?' or 'it’s not fair's', nothing of that. She had a way of facing difficult situations, turning them over in head and making them all right with herself. And I saw this all the time. And it made life so much easier for me of course I don’t know what it would’ve been like if she’d been distressed and clingy and angry. She wasn’t at all. and like she said it was it was a wonderful experience. It was I, I’m afraid of being misunderstood by saying that. But you know I had some bereavement counselling from the local hospice who were extremely good all the way through.
 


A few carers decided to move their relative into a nursing home when they felt it was becoming impossible to provide sufficient support themselves any longer. Often this was a very hard decision to make. Some felt guilty about moving their relative outside of their familiar surroundings. Those who managed to keep their relative at home until their death so they were able to pass away surrounded by friends and family, were pleased that they had achieved this.
 

Moving her mother, who had dementia, into a home was a positive decision. Tricia mother’s face...

Moving her mother, who had dementia, into a home was a positive decision. Tricia mother’s face...

Age at interview: 59
Sex: Female
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So after a lot of heart searching I felt the care home was the best place for her.

And is that a private care home?

Yes.

So we had to make the decision to sell up, she wasn’t well enough to go back home. Her mental state had deteriorated. She’d never have been able to manage at home.

And how is it now for you that now that she is being cared for?

Well, it’s just a huge relief and to know that she’s in there and she’s happy and she’s, she’s being fed and looked after properly, having proper baths. There’s a hairdresser’s there. They launder her clothes so she always looks nice. They take her out on trips. They have events, things going on in the in the care home. So she doesn’t know where she is. She doesn’t know where she is. She can’t describe it to anybody but, for the moment, she’s living in the moment and in that moment she’s happy.

The stress has gone from her face because she often looked really stressed at home; really worried, because I think she was trying to make sense of everything and couldn’t. And that showed on her face and she, her whole face is relaxed and.

And how about your.

Everything.

And how about your stress level?

Well, it’s, I mean I still obviously feel that I’m taking responsibility to my mother because I’m obviously still going to see her, making sure everything is all right and that they are looking after her okay. So still doing that but the stress levels are really declined and, you know, I just can’t tell you what a, what a difference it’s made. I don’t know how much longer we could have kept on trying to do it and looking back, I think we did a good job. We kept her at home as long as we could.

I don’t really think we could have done anymore.

No. No.

I really don’t.
 


Several carers said the hardest thing about caring for someone with a terminal illness was the lack of hope that things would get better again. This could arouse difficult and conflicting feelings of wanting their relative to stay alive for as long as possible, but not wanting to see them suffer, and also, wanting the caring to end due to sheer emotional and physical exhaustion. Georgina described it as “living on an edge - unable to bear the fact that you can’t stop the inexorable force of death”.
 

Anne’s husband recently moved to a nursing home. Visiting him there has become a duty. Anne...

Anne’s husband recently moved to a nursing home. Visiting him there has become a duty. Anne...

Age at interview: 75
Sex: Female
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As for me, well, I find it very difficult. I can’t I can’t see a way forward. I feel as though I’ve got a brick wall in my front of me. I can’t see under it, round it or over it until he goes I suppose. I’m grieving now but, you know, he’s not the man I’ve lived with her for fifty two years anymore. And, and that’s why my daughters thought it would be an idea for me to have some counselling, which I’m going to do.

So do you go visit him all the other days then, every day?

Well, no. Well, I interchange it with my daughter. I usually try and go Saturday or Sunday. Sometimes I’ll do both and then I won’t go Monday but I’ll go Tuesday because I just don’t feel I can go to both, do it all. My daughter might go on a Thursday. She has a busy life anyway and so she has to fit it in with her life. I know that she’d drop everything in an emergency, you know, if we got a call everything would get dropped. And my younger daughter comes up once a month with her husband and dog [laughs] because Jim does love to see the dogs. And they make a fuss of him and jump on his lap and give him kisses and he laughs. He likes it.

I suppose I think when I’ve been to see him, like I’ve been to see him today, I come home and think, “Oh, I’ve, I’ve done...” I feel I’m doing a duty now because if I let it, if I took down the brick wall, it would destroy me I think. I can’t let it I can’t let it because I’ve still got to keep control of… ah, what was going on.

Seems to be when I know I’m going to see him, I don’t feel I can do anything else other than get up, have some breakfast if I want it and get myself showered and dressed. Whereas if I’m, if I’m not going to see him I suppose I do approach the day slightly differently. I might take a cup of tea back to bed or something and, and something like that or watch the news on TV in bed or something, whereas I stay up and I, if I know I’m going to see him it’s…

Because I’m limited, restricted actually, my mobility is restricted. So you know, I miss him in a, so many ways really. If I drop something or it went under a chair, you know, he’d go down on his hands and knees and get it. I can’t do that or I drop something on the floor in the kitchen, he’ll pick it up for me or he would have picked it up for me, yeah. You don’t know, just I don’t know. He’s here but he’s not.
 

 

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...

Age at interview: 62
Sex: Female
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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].
 



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Last reviewed December 2017.

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