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Caring for someone with a terminal illness

Changing roles and relationships

Taking on a caring role frequently triggers changes in relationships (see also Impact of caring and terminal illness on family and friends'). For many people, the challenge of dealing with a terminal illness changed the well-established roles they and their friend, partner, parent or other relative had beforehand. The people we talked to had become carers for different reasons, and how they viewed their relationship with their sick friend or relative whilst caring was influenced by what had gone before.
 
Some people did not like to think of themselves as carers. They regarded the additional responsibilities they took as a natural extension to the previous relationship. Peter (interview 06) said, “If you love somebody, you want to care for them”. Several others echoed this sentiment. Jane felt that no one else would have been able to care for her husband as well as she could, as no one else knew him as well.
 

During the time she cared for her partner, Janet felt they were drawing closer together, talking...

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Age at interview: 59
Sex: Female
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When you think about your relationship do you think it changed as her illness started to take hold? Did you feel the balance of your relationship change?

Yes, but in, not in a bad way. I mean I felt that we actually drew closer together because we began to really talk about some things that we’d maybe not bothered to talk about before because it didn’t seem to be important. But we began to talk much more about what we meant to each other and the things that we’d experienced that we’d really enjoyed together. So that was a positive thing.

That, in another way, our relationship changed in that I began to take a little bit more, what’s the word, responsibility for things that she tended to have taken responsibility for before, like she always she actually really enjoyed shopping and I hated shopping. We’re talking about, you know, day to day shopping, shopping for food and things, so because she was happy to do it and because I hated doing it, she always did the shopping. She always did the supermarket run. Well, of course, I now had to do it. And I was quite capable of doing it but I was a bit out of a practice so I had to kind of really focus on making lists and things of what to get. So yeah, that balance changed slightly, from the point, yeah.
 

 

Lynne couldn’t imagine being a professional care worker, but taking care of her mother felt very...

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Age at interview: 53
Sex: Female
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Were there any good aspects of your caring experience?

No. No, I couldn’t possibly, I admire people that do it. I couldn’t do it. It’s not for me. I couldn’t ever be a nurse or a carer. In fact, I’ve got a friend who works in a school and she does caring. She does respite care for quite severely mentally and physically disabled children and I just think she’s wonderful because I couldn’t do it.

But you looked after your mum?

But she’s my mum. It’s different when it’s your mum. I’d do it for my, you know, for my son and my daughter but I didn’t like bits of it I must admit. You know, my daughter said, “Oh, Mum. I can’t wash her down below bits and, you know, that’s, you’ll have to do that.” What do you do? It’s your mum. I can’t have my mum not being clean, you know. She was quite dignified and I couldn’t see her not clean.

Do you think your relationship with your mum changed over those few weeks that you were caring for her or was it the same as ever?

No, we got closer. People used to come round and she’d say, “Oh, Lynne’s doing a wonderful job of looking after me.” She said, I said, “Mum.” She said, “Oh, I’m a pain. I’m being a nuisance.” I said, “No, you’re not. You’re my mum. You’ll never be a pain. You’ll never be a nuisance.” And then I sung that song to her, “He aint heavy, he’s my brother.” And I explained what it meant so I said, “You can be, you’re like that song. You’re not heavy, you’re my mum.”

And it was really bizarre because when she was in the hospice the first couple of days, when she was okay, she hold my, she said, “I’m going home now.” And she’d hold my hand, “Okay. Thanks darling. I love you.” My mum was never really one to say, “I love you.” I mean I knew she did and she’d sort of do little things and pat my hand or touch my face but she never actually said it but, those last sort of couple of days before she stopped talking she did. That’s her last actual words to me were, “Love you.” Because we used to joke about saying, “Love you.” You know, they do that now, don’t they? As we were going, my daughter and I and my husband and my son and we were leaving on the Sunday night and she said, “Love you.” That was and then we all laughed and the next day we went, I went in the afternoon and she just could just about wink, just wink at me. She couldn’t she didn’t talk and next day she didn’t even open her eyes.
 

Others had come to take on the role of carer out of a sense of moral duty, even though they found some aspects of the caring role quite difficult to cope with. Heather described how at first it felt wrong for her to help her husband with his personal care, because he had always been a very private man. For yet others, it was a practical decision because they were the ones best placed within the family to provide that kind of support. Katie was sceptical at first about taking in her sister-in-law and young daughter but eventually came to regard it as a privilege to look after her sister-in-law in such an intense way.
 

Keith describes himself and his wife as soul mates. There was no embarrassment taking care of her...

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The, the important thing from my point of view was attempting to keep, she wanted to come home and therefore my objective was to try and make that as natural as possible. So I did attempt, not very successfully, to cook, under her guidance, she was a really excellent cook, and so I did those things for her. Certainly, cleaning her when she was, that was when the carers were not, you know, in between carer visits. And gradually there was no embarrassment there. I mean there’s always that first difficulty where Pat would say, “No, I don’t want you to do that.” But very quickly that was overcome and just everything then from that I could do to make life easier for her and more comfortable. 

And again, I think the number of years a couple are together are, I can’t put a kind of a term on it, but after you’ve been together for, you know, I don’t know, ten years, twenty years, you are, as far as I’m concerned, it’s unfortunately become a hackneyed phrase, you are soul mates. I mean because although you have friends to circulate with, have nice social experiences, when it comes to it, it really is the two of you and you’re so comfortable in that kind of, comfortable little, I think almost an unawareness of how comfortable you are. And it is just so, so natural from the, and I mean it, from, I retired on a Friday and on the first Monday Pat said to me, “What are you going to do?” And I said, “Well, hopefully we’re going to have a good comfortable and rewarding togetherness.” “I understand. I know that, but what are you going to do?” I said, “Strangely enough Pat, I’m going to read.” And she said, “What, what do you mean read?” And I said, “I’m.” It was April, it was a lovely day, lovely morning, we’d have a fairly leisurely breakfast, first breakfast of retirement and she said, “Well, what are you going to read?” And I said, “Well, it may sound strange, I’m going to read Wind in the Willows.” And I’m only saying that because she said, “Well, if you’re going to read, I want you to read to me.” And from that first day I read to Pat and I mean read to her out loud, not weekends, not Saturday and Sunday, and while I read again, she was a very good knitter of lovely garments. And while I read for anything for forty five minutes or more, she would knit. And this went on right up to the time when she was here home ill, and at last, she said to me, “Keith, there’s no point now in reading.” But in that time we probably read together something like two hundred books of all kinds of, you know, from all genres from sort of whodunits to thrillers to classics. So it was a, again, a very, way of having a bond, because even with tiffs, you know, it never prevented us reading together the next day, never.

So it was a very useful bond, to say the least. And I, again, I think this situation where you, when you’ve been together a long time, you know one of you has got to go. It’s most unlikely in, unless in the case of an accident that you’re going to go together.
 

Many of those who cared for a parent or spouse talked about how roles within the relationship had become reversed from what they used to be. This was often accompanied by feelings of loss and uncertainty. Mary felt very scared when she had to take over looking after household bills and paperwork, as her husband had always dealt with that side of things. Susan needed to become a mother to her own mother with Alzheimer’s disease, which could be difficult to cope with. Georgina’s mother had dementia and bowel cancer and, at times, Georgina had to treat her like a small child, but was careful not to become overly controlling or make her feel useless.
 

Cassie had to take her father to hospital for radiotherapy and chemotherapy and found it...

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Age at interview: 26
Sex: Female
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And then one day a man came through and burst into tears and my dad went up to him and took his hand and just said, “I know it’s scary but they can give you some sedation.” And that’s when he told me that he had to take some medication before that would sedate him because it was so terrifying and to help me understand, he said, “Do you want to come through and see what it’s like?” And so I asked the nurses and they said, “Yep, no problem.” And you sort of go through this corridor into this room that’s absolutely huge and there’s just this machine and it just is huge. It’s like a spaceship and they turn it on and all these green lights and it starts moving around and there’s this little bed and my dad, who at this point was probably about eight stone maybe less, sort of climbed up on there and then they just put this big plastic shield over his face and clipped him down. And then, at that point, he couldn’t he looked so vulnerable and I could tell he was scared, they tell you, “You have to leave now.” And so I had to turn away and leave him there for twenty minutes and afterwards he said to me, “Do you understand why it’s scary?” And I just, I don’t understand how he did it every single day for I think it was three months because he kept getting ill and he couldn’t continue.

And, eventually he started his chemotherapy at the same time that I started going to university and it was on the same day. So I said, “Oh, that’s fine, you know, I’ll manage. I’ll take him to chemotherapy and then I’ll pick him up on my way home.” And that was another horrible, it was like a role reversal. I was turning in to the parent and he was the child. I was taking him to hospital and leaving him there when he was upset and scared and frightened and ill and not wanting to be there and I was sort of like the parent going off and leaving him and saying, “I’ll be back later on today.”

And like the whole day I was just worried about him and sort of ringing up and seeing if he was okay and making sure I had all the paperwork and everything that he needed each day.
 

 

Jacqui had always known her husband as a strong and proud man. She renewed his driving license...

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Age at interview: 60
Sex: Female
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What about your relationship with Terry? Did his illness and the fact that you had to look after him alter your relationship? You mentioned, I think you mentioned early on that it changed the roles in your marriage.

It did, yeah because I always depended on Terry. It’s like probably a bit old fashioned like the bread winner and, you know, whatever he said went and if he said no, it was a no and things like that. But, and he was always the stronger one of the two of us but as he got ill I became the strong one and I became the one, the more dependable one, if that makes sense. I don’t know if that actually makes sense or it’s the right word but I became stronger and more dependable, right, so and I tried not to let him see that because I didn’t, it’s so, it’s so hard for, like it was so hard for Terry because oh, it he couldn’t, when he couldn’t drive no more, you know. Towards the end, when he was driving, we was at the caravan and my son would drive us down there, dro… like come and pick us up or my daughter and we was down there and we and he said, “I want the car down here.” So I went, “Oh, okay.” He said, “Yeah, we’re going to go out in the car.” And I thought, “Oh God.” I thought, “What am I going to do?”

Because I knew he didn’t have the strength and I didn’t want to tell him that he couldn’t. So I said to my son I said, “Look, Daddy wants to drive the car.” I said, “And I’m scared, to be honest.” I said, “I’m really worried.” I said, “Would it be possible if you come down at the weekend, you and Daddy go for a drive but let Daddy drive the car, you know.” With his oxygen and things like this and I said, “See what, you see how you feel and then if you think that’s okay then.” But we didn’t let Terry know this. I didn’t want him to know because it’s like, you know, he’s gradually, couldn’t do so much that I, oh, it’s like chipping away what he could do. Anyway, he went out with [my son] and he drove the car and he did take me just only down a country lanes but he said, “I don’t think I’ll be doing that no more.” And I went, “Well, it’s up to you, you know. If that’s how you feel.” He went, “No.” He said, “It’s too much for me.” But I, you know, and he had to find that out for his self because it’s quite sad when, you know, you can’t work no more. You can’t do this no more. You can’t now you can’t drive now more. His driving license ran out and I renewed it. I knew he’d never use it again but I didn’t want him to think he hasn’t got that. You know it’s, silly things really but I, you know, at least he still had it. He wasn’t going to use it but he had it, you know.

It’s like he’s a proud man and, you know, I think that was one of the saddest things when someone so proud, so strong and you just see him, just little bit by little bit. So...

That was part of his manhood, wasn’t it?

Yeah.

All that stuff.
 

However, a few of those who acquired new skills when their partner had to step back from the things they had done previously found the experience quite positive. Brian enjoyed expanding on his cooking skills. Jacqui learned to give her husband a shave and cut his hair.
 
Several carers witnessed personality changes in their sick friend, partner or relative as they became more severely ill. This could cause conflict and make it harder to get on sometimes, especially as most carers felt that it was wrong to argue with someone who is very sick. Julie would bite her lip more often to avoid a confrontation with her partner. Savita missed having long conversations with her husband and thought that he had become more self-centred. Tricia’s mother, who had Alzheimer’s disease, developed paranoid ideas about Tricia stealing things from her household. Tricia coped by relating to her like a professional care worker would to a patient. A few people felt that the illness had robbed them of the person they used to know and love long before they died.
 

As his partner’s health deteriorated, Henry found that she became more demanding. At times she...

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Age at interview: 63
Sex: Male
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Did Jane’s illness have an impact on your relationship?

Yes, well, it did a bit towards the end. I mean, obviously, obviously, the physical side of things and we were sort of sleeping in separate beds [coughs] for the last sort of two or three months I suppose. She, trouble with it was that, yeah, she, she Jane was a very, very even tempered, calm person, very gentle and that in the last two or three months, she could get quite difficult about silly little things and started complaining about things, you know. All silly things, you know, like a door that hadn’t been closed, which possibly was creaking and therefore irritating her, but there were little things and a lot of it was directed at me, why wasn’t I, why hadn’t I sorted out? And I did one at one point I sort of said, you know, something, words to the effect of, which was when I snapped at her. I sort of said, “How come everything round here seems to be my fault?” And I said it in a rather a sort of unpleasant way, and I actually walked out the room because I sort of, [grrr] sort of a bit cross. But then she called me back and said that she apologised. She said she was, it was sort of heart breaking, she sort of apologised for upsetting me.

But she did change in that sense, that she became very demanding. She’s not a demanding person normally but she became very, very demanding and you know, [click] “Snap to it.” And, you know, I remember once when she she’d sort of rung my phone in the middle of the night to go to the loo, and then I’d just got back, just going back to sleep and the phone rang yet again, and she wanted a glass of water, and part of me felt we could have done both those together. But Jane hadn’t seen that. She was… I was just there to sort of do things for her, and she lost a lot of her sort of sensitivity. But equally, at other times, she could be incredibly sensitive while all this was going on, so it sort of tended to vary a bit. But she was very sensitive, you know, when she had the chat with, sort of last full conversation we had just before she died about sort of how she wanted me to lead my life. And that was very, very sensitive and very understanding and caring. So it could change, but, yes. It did change a bit.
 

 

Sue felt that she had lost her father to dementia a long time before he actually died. It helped...

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Age at interview: 63
Sex: Female
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How do you feel that your father’s illness affected your relationship with him?

I, he wasn’t my dad, and that’s quite sad to say, but that really started way back in ‘87 when, if you went round there he wouldn’t, you couldn’t have a conversation with him long term. He’d started to become in a world of his own, even then.

But, for me, it was certainly a release. I think I, as I say, I’d lost my dad a long time ago, two years ago. The impact it had on my life, particularly, looking after him and also being aware that we were supporting Mum as well, was huge. Some, some of my friends used to say, “How did you change your father?” you know, do his personal care and I said, “Because I switched off. He wasn’t my dad and that’s the only way I could do it”, I said. There were times when he fought with me but I think he knew it was me, and he would be in a real mess, you know, personally, in every way that, and he wouldn’t let me change him or anything. And I just had to be really firm with him and, but he, he got quite physical towards the end and, you know, hitting and things like that. He didn’t want anybody to, even, it wasn’t just for the family, it was even with the nurses in the home towards the end, but they were telling me that that is what often happens with dementia, especially with severe.
 

Despite unavoidable tensions and some awkward experiences, many carers felt that they had grown closer to their sick friend, partner or relative during the time they had cared for them. John thought that he’d got to know his son Tim better in the last three years of his life than in the twenty years previously. Several couples said awareness that their time together was finite helped them to concentrate on what mattered most and to lay trivial arguments to rest.
 

Dick was keen not to medicalise his relationship with his wife. They were both committed to make...

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Age at interview: 55
Sex: Male
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So eventually Di had the tests and they the diagnosis was motor neurone disease. And the observation was that it was actually progressing quite rapidly. So, I got very angry at that point. I don’t have any religious belief but I got angry nonetheless you know. And I … I didn’t really know how to handle it at first.

And, but I decided and Di was quite happy with this that I wouldn’t look up a lot of details about it you know. I mean I knew basic information. I got the basic information about what to expect. Because I didn’t I didn’t want to pathologies my wife. I wanted our relationship to continue as a relationship. I wanted to have a relationship with my wife not with a patient you know. I didn’t want medicalise the whole situation and fortunately she felt exactly the same way. So I deliberately made a choice of just getting myself the basic information I needed to find out what we needed to do.

So I think it was very important that we really talked openly and freely about how we felt in those last eighteen months. And I think the very process, the very fact of Di’s dying as well focussed our minds. So that many of the, a lot of the trivial stuff that had always kind of dogged our relationship was put aside. And we found it easy to do that. And we made a commitment, really, not openly but there was I think there was a commitment on both of us to, to just making that last year a wonderful year, you know. And to, we had some disagreements, we had just some disagreements. But we really wanted to, we just wanted to continue to be husband and wife together and to live our lives as best we could as we always had done as far as was possible, despite all the kind of hospital beds and commodes and everything that had invaded our house, you know.

And we did that on all levels. I mean we, we decided that as long as possible we would continue to have a sex life. And I understand from the counsellor that lots of people kind of abandon that and you know. But it was difficult simply because it, you know, sort of Di’s increasing paralysis. But it was meaningful.
 

Most carers who looked after a sick spouse talked about their sadness and sense of loss when the progressing illness made it difficult for them to be physically close. For many, cuddling up together had been an important way of giving and receiving comfort in the earlier stages of the illness. A few carers talked about feeling upset when they had to stop sharing a bed because their partner had to go into hospital or needed to have a hospital bed at home. After talking to a Macmillan nurse, Jacqui and her husband decided to send back his hospital bed so they could continue to enjoy physical closeness at night times.
 

The thought of having to sleep separately after more than 19 years together was upsetting. Jane...

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Age at interview: 44
Sex: Female
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But yes, so I stopped work, and George, at the point at which I stopped work, George was finding it increasingly difficult. He’d had a horrible fall down the stairs. We’d, so we’d had to bring the bedroom downstairs, which was another, another really difficult thing because, at that point, we got a hospital bed and nobody says to you, “You’ve shared a bed for nineteen years, you know, do.” Or longer than that. We’d been married for nineteen years, you know, “You’re going to have to go into a single bed.” And all the implications that go with that of actually, not about sex, but about closeness, about, you know, being able to snuggle in next to somebody that you’ve always snuggled in next to at night time. It was so, so we did get a hospital bed because we knew that we had to have the hospital bed because, actually, it was much more, you know, it was it was much better for George. He could, you know, he it could, he could sit up in it. He could, you know, adjust his position much more easily in a hospital bed than he would have been able to in a normal bed.

And he, and so we went out and bought a nice single bed for me thinking that we’d got quite a long time that I would be having to sleep in a single bed next to him. And little things, like we made sure that the beds were the same height when we went to sleep you know, no matter whether we’d had to adjust them for, you know, getting George into bed and getting out of bed and stuff. Actually, making sure they were both the same height at night time, you know, when we when we settled down to sleep.

And you know, that so I suppose that’s one of the things as a carer, is that huge change in our relationship of, of really going from being his wife to being his carer was, was enormous. And I wouldn’t have, you know, and I would have had it any other way because actually, I really, really wanted to care for him and I really felt that, you know, it was my responsibility to do that. I was a nurse. We were married in sickness and in health and, and actually, it just really, really mattered to me to be able to do that, to be able to do all his care and I found it very difficult to ask for help.
 




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Last reviewed December 2017.
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