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Caring for someone with a terminal illness

Bereavement and grieving

Carers who have built their daily routines around caring for a patient found that when the patient died they were left with ‘time on their hands’. Susan found she couldn’t get used to having free time after caring for her mother. She decided to make an effort to re-engage with friends and to take up tennis, which she loves but had been unable to do while caring for her mother. Janet worked freelance from home and found it difficult not having a set structure to her day; she found it depressing being at home alone and had to make a point of calling friends and finding tasks to occupy her. Carers spoke of missing the regular visits of the nurses and others who helped them care for the patient. Jacqui commented that suddenly there were no medical machines making a noise in the home.
 
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Heather found the house seemed very quiet after her husband died, not only did she miss the...

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Age at interview: 66
Sex: Female
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Thinking about having a relationship with the nurses, how did you find it after Bill’s death because, obviously, they were visiting less?

I missed them. I really missed them because I just didn’t see them. I see one of them up at the pool and we, you know, we have a chat now and again. But you’re a patient. You’re the wife of a patient and they’ve got loads of other patients so obviously, they move on to the next person but it was so quiet when, when Bill had died and my son had gone. Nobody dashing in at nine o’clock and half past five to wash him and see to him. No care manager ringing. No Macmillan nurse coming in and I really missed them all. It was just very, very strange and I think that’s quite a common thing.
 

 
People experienced the grief of their loss in many ways. Lynne recalled how when her mother was alive she always told her to ‘stop crying’, so since her mother’s death Lynne has done her grieving in private. Mary described the pain of losing her husband as like someone kept sticking a knife in her back and the pain would not go away. John (Interview 10) recalled that when his wife died he cried more than he had ever done.
 
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David found the physical expressions of grief difficult. He didn't weep when his dad died or at...

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Age at interview: 58
Sex: Male
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And I mean the physical expression of emotion, that’s the breaking down in tears or that kind of expression I don’t think I ever did that and it was difficult even on the day that my dad died for that to happen. I realised at this point that my dad had died and that, I don’t know. I didn’t weep then. I’m not sure I did at all, not at the funeral either. And it may be that I’ve done my grieving in private after then.

Obviously it’s something that you’re aware of every day of your life that you’ve lost your father and that your mother is living on her own and that she is having to cope with things. But, but actually it’s the physical expression of that grieving is something that’s been very difficult. And I think I’ve worked things out for myself by getting involved in work around cancer research in which I’ve tried to do something about, what, you know, use my father’s experiences to help other people who might end up in that sort of situation but that’s dealing. That would mainly be dealing with the illness, yeah and treating the illness but the emotions around that, that’s a much more difficult area to work on. We’ve never been offered counselling but I guess that we’ve been able to manage without counselling that may be part of the way that we are, as a family are made up anyway.
 

 
Many carers spoke of their on-going grief. Dick found that the solitude of being out on his motorbike was useful; he could get angry or upset and ‘rant’ inside his helmet and no-one would know. For Heather there is a comfort in continuing to live in the home she shared with her husband, but Mary found it extremely difficult to manage the household as her husband had always taken care of that. Although Roger (Interview 30) is aware that he has to face many different emotional hurdles since his wife died, such as birthdays, Christmas and the anniversary of her death, sometimes there are things that catch him unawares, like her scent on clothing in the wardrobe. John (Interview 12) finds every time something nice happens he is aware that his son Tim is not there to enjoy it with the family.
 

David talks to his sons regularly about their mother. Although after three and a half years they...

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Age at interview: 43
Sex: Male
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It’s very difficult, it’s just the pain of the loss. That’s the way I feel now, but I’m three years, three and a half years on and contrary to the fact that I feel quite emotional, things have moved on. We go forward. We do look back. It’s like, with the boys I, we constantly talk about Fiona or their mum. But it’s slightly less now. Before it was like always a topic of conversation. Now it’s less so and, and that’s really good in some respects because we don’t forget, but it’s not monopolising what we’re doing. Because I think that would be, that wouldn’t be too clever to do that. But the boys are doing well.

Good.

I’m doing quite well. Even though I’m crying at the moment [laughs]. And, yeah, we’re, we’re going forward.

But for three, six months afterwards, issues regularly but I just assumed that was kind of normal. I say regularly, I don’t mean throughout the whole day there was tears, but I could be fielding something you know, there wasn’t a period in those first three, six months where I’d think, “Oh, they’re totally over it and they’re, it’s just, you know, it’s normal issues on their mind.” And I could be fielding a, a sudden concern if they see a photo or there’s a thought, there’s memory or something and still now it’s only actually about a week ago [our elder son] who’s now 12 had a moment where he was missing his mum.

Yeah, I’m sure.

And it’s, it is quite interesting because if you’re mind isn’t open to that and ready to link with that i.e. you’re focused on doing something else you actually have to force yourself, because you’re no longer, you know, constantly thinking there, you have to be able to flip to the, to the other person quite quickly to kind of capture that. So, well, we’re three and a half years on, so, but by no means has this a monopoly on our life. It’s just very occasionally now.

Yeah. Did Fiona leave any memory boxes or anything like that for the children?

We put memory boxes together.

Oh, that was nice.

So, yeah, that is good. I mentioned [our elder son] being a bit unhappy, he went to the memory box so that’s three and half years on he went there. I wasn’t aware of these things, it was my sister who told me. So Fiona didn’t sort of want to, she didn’t have this in her mind, but after her death my sister mentioned that. So we had two boxes made by a local, local chap, very nice boxes. And they’ve got a whole load of memories.
 

Carers can experience loneliness after the death. Sue and the family phone her mum every day as she gets lonely, especially at the weekend, but Sue recognises that the family must try to get on with their lives.
 
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Jacqui didn't have a social life outside the family. Although her three children keep her busy...

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Age at interview: 60
Sex: Female
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So what are you doing with yourself? What are you finding to do?

Decorating. It might sound silly but cleaning and decorating got me through a lot of different things over the years and three days a week I’m at my daughter’s. I’m decorating her house. I just finished decorating my son’s house and I spent the last year, I suppose decorating [laughs]. But once, once I get everything sorted with the pension and everything I’m going to do something voluntary. That what I’d like to do. I don’t know what yet.
I’ve been thinking of a few things but, yeah so.

Do you think all this caring that you’ve done has had an impact on your social life at all or did you not really have a life outside of family?

No, I never did. I think I regret it now because I get lonely now. See I’ve got three lovely children and they keep me busy but it’s lonely [laughs]. You know.

But I never needed friends like yet I’ve always said to my children, “It’s so important to have friends and keep friends.” From like and they’ve got friends from when they was little but I never done that, yeah. They’re trying to encourage me now. They say it’s my turn now. I should be out there enjoying myself but I will I suppose but it’s early days, yeah, so.
 

 

Peter has a new lodger who keeps him company after the death of his friend Jill.

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Age at interview: 69
Sex: Male
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How are you coping now?

I was down at the end. I didn’t realise, sorry, I didn’t realise I was down really and though I had got a chest infection, which I never get, and it was getting me down all the up and down stairs and taking her out every morning at eight o’clock to distract her. Running the household because she couldn’t cook, anything like this. But, by coincidence, a young fella was looking for accommodation, friend of a neighbour so I offered to put him up so I got company. He’s still here at the minute. He’s a forty year old.

He’s been no trouble and, in a way, he must have been company to me. He must have been must have helped me just by being there.

Right.

Because I wasn’t depressed or bad but I think it did help me having company. Somebody near me, you know.
 

Some carers viewed the patient’s death as a release from their disease. Despite a terrible feeling of loss, Cassie remembers a sense of relief that her dad was no longer in pain. Ruth feels she did a lot of her grieving while her mother was dying with stomach cancer.
 

Sue reflects that she lost her father when dementia set in two years before his death. She views...

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Age at interview: 63
Sex: Female
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I managed this quite well because I felt that I’d lost my dad when the dementia set in when he was about 87, because my dad was a very well-travelled guy, very good at finances, he’d helped me an awful lot over my life and a great conversationist but, as I say, when he first got the dementia he couldn’t talk for great lengths. He stopped reading the paper. He was an avid reader of books when he was, even in his eighties he would get four or five books out the library. And that all stopped. And little things like we’d go in and see he’d got the newspaper upside down, and if you questioned him he’d get really adamant about it.

But my sister, it was difficult as well because when we were growing up I think, if families do have favourites she was definitely the favourite and not that it mattered to me, and I think my sister, unfortunately, lost her husband of thirty years only two years before my dad died. So for her it was a huge thing to have to happen and she didn’t deal with it very well. If I can say anything, I’m actually quite glad my dad’s gone because he’s out of that awful pain, and I knew there was no way of him coming back as the dad I remembered. And if you reach 89 and you’ve had a wonderful life until you’re 87, and I do the same, I shall be so happy.
 

 
For carers who are currently caring for a patient with a terminal disease, there can be a sense of grief as they look to a future without their loved one. Una described several ‘mini-bereavements’ as her husband’s health started to decline, and a sadness that he cannot be part of the family’s plans for the future.
 

Anne talks about the gradual changes in her husband; he is no longer the character she once knew.

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Age at interview: 75
Sex: Female
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And I said earlier, really he’s, he’s not my husband anymore. He’s a poor man who’s very ill. Okay, one I know extremely well but he’s not, the character isn’t there anymore really. The persona’s not there anymore.

And that’s been a gradual process, presumably.

It’s been gradual. As I said to you, for years now I’ve had to live a day at a time. On the one hand, I think if only he could just fall asleep and not wake up it would be wonderful for him and for me because I don’t know that I’m going to be able to cope.

Anyway, he cannot contribute anything to his own life let alone mine or anyone else’s. He can smile. He can make jokes, I can, I can tease him and he’ll smile or he’ll, he’ll try and, he always used to be able to make me laugh, you know. All during our married life I would, you know, we’ve had, we’ve had rows or arguments and but it would always sort of never ever can take, you know, continue day after day. It was, oh, what’s the word I’m looking for? Sulking. Well, he could sulk but not for long. And, and we’d end up laughing, how stupid we’d been or something, you know, and he had a nice sense of humour but that’s gone.
 

 
Counselling proved helpful to many carers, offering emotional support and practical advice. Mary found counselling helped her prepare for her husband’s death and be strong. Hospices have a bereavement service and John (Interview 10) and his family were contacted by the service after his wife’s death; he found the counselling very helpful as he was able to express his feelings. David (Interview 35) also found counselling helped him, simply by ‘touching base’ and talking to someone with experience in bereavement. Counselling helped Emma cope with her distress at not being present at the moment of her mother’s death. Heather had counselling six months after her husband died; she found it useful just to talk to someone. Roger (Interview 30) had done a brief counselling course himself and feels that confronting his feelings by talking about his wife helps him to cope and to keep her memory alive.
 

Dick felt it was important to talk to the hospice counsellor about the memories of his wife that...

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Age at interview: 55
Sex: Male
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I think what was difficult was in the first early stages was a simultaneous sense of presence and absence. I mean she was present in everything in the house you know because you know our lives, our relationship kind of entered into all… everything had a memory attached to it. And had she walked in the door at that point I wouldn’t have been surprised, you know she was still very present to me in my mind and my imagination. But of course she was also very absent.

And the sense of her presence often brought up a sense of absence and it became very, I was very confused.

So it was really important for me to talk about those things. And the hospice continued the bereavement counselling once a week for me and for I think twelve sessions after, after she died. And the counsellor was very good and that was very useful. She gave lots of useful feedback. She was, she, she took both, she, she had a very nice balance between taking a therapeutic approach where we were talking about my feelings, how I how I was reacting to the circumstances. And practically, sort of practical counselling is what you … this is what is available to you as well can I do this, she was actually also offering to help as well and that was very supportive as well. And because it was also the hospice where Di had, had been every week and I’d been to take her and visit her there, there was a sense of continuity about it which was good.
 

 
Maggie went for three counselling sessions at the local hospice after her husband died, but found the style of counselling unhelpful; she plans to contact her own doctor if she wants further counselling later on. Although Roger (Interview 32) feels bereavement support is a wonderful service, and he went to two counselling sessions, he didn’t feel he was benefitting. Lynne was unable to go to counselling at the hospice as they only offered sessions during normal working hours and she could not afford to take the time off work. Jacqui did not take up the offer of bereavement counselling as she has no regrets about her life with her husband, and she sees grieving as a process she has to go through.
 

Cassie had been helping to care for her father until his death but counselling was only offered...

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Age at interview: 26
Sex: Female
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Did you did the family have support, you know, the Macmillan nurses stopped coming, the equipment goes and there was the hole that you referred to. Was there any professional support to help you climb out of that hole?

No. I remember that my mum was offered counselling or somebody to talk to by the nurses afterwards and my mum said, “No, I don’t want to talk to anybody.” But I wasn’t offered anything and none, none of the rest of my family were. So it was just, “Oh, this must be so terrible for you that your husband’s died. Do you want somebody to talk to? You must talk to somebody. There’s somebody there for you to talk to.” And my mum says, “No, I don’t I don’t want to talk.” You know, this is on the day that he’d died so she wasn’t ready to talk to anybody [laughs]. And then I think probably, a week later or something they’d pop round to see you and collect any medication that’s left over and they said again then, “You know, this must be so terrible. You’ve lost your husband. Do you want to go and talk to somebody?” And my mum said, “No, no. I really don’t.” But that was it. Nobody offered me any support or the rest of my family. So that that was it. It was very much the equipment’s gone, the medication’s gone, the visits are gone, all the notes are gone so that’s that done. Next. It was that was what was quite difficult I think.

How did you get through that period?

I was very angry and I think with what we were saying earlier about my organising and what I could organise that I understood I think being able to be very specific and very organised and keeping myself very busy got me through those, those empty holes, those empty parts, and a lot of the anger I tried to alleviate by writing to the hospital but I was very polite and didn’t say that I was angry. And I think I just got through it really. And when I look back now, I do think, “How do you, how does anybody get through it?” But you I just go through it.
 

Many carers talked of how friends supported them in their time of grief. Although David (Interview 08)’s mother received a phone call from the Macmillan nurse after his father’s death, most of the support for his mother came from the family. Dick’s friends all rallied round after his wife’s death. One friend in particular rang Dick every night and visited regularly, allowing him to talk as much as he wanted. Jacqui’s daughters took her away just after her husband’s death. Heather took up swimming when her husband was ill and the new friends she made have been a lifeline since his death.
 
Sharing memories can give solace. Dick has grown closer to his step-son as they have talked about their lives with Di. Dick has also become close to Di’s family in America and Canada who have been supportive since she died. David (Interview 35) and his sons created memory boxes after Fiona died, which his sons find a great comfort when they are missing their mother. Georgina has a happy memory captured in a photograph of her mother in a bubble bath at the hospice. Janet organised a concert as a memorial to her partner, which she found therapeutic.
 
Deciding when to go back to work after bereavement can be difficult. David (Interview 35) was unsure when he should return to work and send the children back to school. His best advice came from his GP who said, ‘Try it and see what it is like’. Returning to work and family routines can seem like getting back to normality or a distraction from the grief.
 

Jane found being a mother and looking after her children was her ‘saving grace’. It made her get...

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Age at interview: 44
Sex: Female
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How was it for you? Because of your children, you still had the role of mother?

I think it was a saving grace. I think that, actually, having a reason to get up in the morning and not to pull the duvet over my head and just tell the world to ‘bugger off,’ was, I really do think that, actually, that’s what kept me going. I had to, and I had to kind of have some sense of normality. I was obsessed with needing to be normal and I was so abnormal, looking back on it.

And, you know insisting, poor [daughter’s name], my middle one was had just done her GCSEs, hadn’t done as well, obviously, because her dad was dying, hadn’t done particularly well in her GCSEs. The high school that she was at didn’t have a sixth form so she had to change high schools to go to sixth form and I insisted that she go, you know, a week after he died and I was insisting that she go to school. And poor [other daughter’s name], the youngest, had went back to school the day after his funeral, just went back to school and her, you know, and her dad had died a week before. And I think, you know, and I think, in lots of ways, actually, that was right because it did mean, you know, because you do have just pick yourself up and carry on no matter how abnormal that feels at the time.
 

 

Although it has been difficult at times, Peter has kept busy socially. He believes it opens up...

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Age at interview: 62
Sex: Male
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Is there anything as parents that since, since Olivia’s died has, that has helped you, and that you would think parents might find helpful to be able to cope?

Yes we have gone out of our way to distract ourselves basically, and so we’ve kept very busy. And that’s not just keeping busy at work; it’s keeping busy in your social life. We made an early decision that we wouldn’t become hermits and although, painful though it may be as I’ve indicated in talking to people about it, once we started going back out to social events, and once we started having people back into the house, which I guess we never really stopped doing, even very soon after Olivia died, we started to get that feeling of support which helped us enormously and continues to do. So we kept ourselves busy. We always had things to look forward to. They don’t have to be expensive things, I mean I’m not talking about going on expensive holidays and things like that, just events, things that you were going to be doing, going to the, to a concert, going to the theatre, going to visit friends, going to a gallery or something. You know, they don’t have to be expensive things. But things that you are, to start with making yourself do. You don’t feel like doing it, you’re making yourself do it. But in doing it, you’re actually opening yourself up to, good events to, it’s something that’s bolstering you emotionally, and, and things which put the loss of your daughter into perspective. You will never lose the love that you have for her. You will never fill that gap that she has left, but you learn to live with it and to appreciate it.
 

 
Faith can be a support for carers both during their time of caring and after death (see ‘Ways of coping or finding solace’). John (Interview 10), who now works for the hospital chaplaincy, found faith had been a great comfort to him and to his wife.
 
 

Dick keeps a photograph of his wife in the front room and finds talking to her is a way of...

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Age at interview: 55
Sex: Male
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And it’s a long, long process, I mean it’s six months now since Di died and really I mean that’s really only a very short time. So I’m still living with her in my head and it’s like I’m still, she’s still present in the house. That, that disturbs me, I’m not quite sure what to make of that. I think it pulled a plank out of my belief system as well when she died. Somewhere deep down there’s some foundation which I’d kind of built a belief system because I had no belief in life after death at all. And yet for me somewhere she’s still around, in, in a kind of space that goes beyond what’s true and what’s false you know. It doesn’t matter, you know it’s like another universe in my brain that’s just opened up where she exists. And I have a photograph of her in the front room and I come in and always talk to her when I come in during the day. Yeah and that’s, that’s okay, that's fine. That's a way of dealing with it. That’s a way of dealing with it you know and while I’m talking to her she’s real and she’s present and when I’m not she’s not, she's not. You know, it’s strange.  

Although Maggie says she is ‘getting there’ and is planning a career change, she feels as though she is living someone else’s life now. Many spoke of how the experience of death has changed their attitude to life. Poppy thinks about her dad every day. She no longer worries about the everyday small things but is trying to do things that would make her dad proud.
 

Mary talks about her change of perspective since her husband died. Now she is building her life...

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Age at interview: 68
Sex: Female
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I just have to find my own way of being on my own and that has been the hardest thing for me. That is hugely, hugely difficult. I can’t describe, it’s like climbing up a precipice actually, learning to live on my own without reference to a family.

If you were talking to somebody else who was starting on your journey, what advice would you give them about that, living on their own now?

Actually, well, I find that my days have been built up in little ways. I don’t try to bite off huge chunks. I just bite off, I take little nibbles and so I try to I tried initially, to get through one day and then I would say, “Okay. That that’s one day.” It’s like turning over the pages of a book and I felt that it must be that because everybody dies, eventually, it’s a natural process so it’s got to be part of life and so I assumed that I was in a process and that if I just went with the flow, that things would evolve, that I didn’t try to control everything because it was beyond my power to do that. So I guess I lived one day at a time. I and then, you know, after a while, you are able to look back and see that you’ve come that far. When I got through the first year, I thought, “Oh well. That’s a year.” You know, and now I look back and think, I’m kind of surprised that I’ve survived nine years going on ten.

And looking back now it’s been a journey, how do you see yourself now?

Actually, I see myself as, as quite changed in, quite radically changed in many ways. I guess I was a huge perfectionist and a huge agitator and I’m not now because I’ve got a different perspective because this has happened and it was huge and I know that what is left is the last part of my life now. And I’m better prepared if you like, in that way, that emotionally I know what the score is. I spend a, a certain amount, quite a lot of my time trying to make this better for other people, to make this experience better for other people. But I, I feel that it’s up to me how I survive. I am in survival mode now. I don’t have that very rich tapestry of life that I had before. That’s no longer my, but I can survive badly or I can survive well and so I try to survive well. So I do, I do build into my days a certain amount of social activity, so that I get to see other people and I know what’s going on in the world around me. And I try to do interesting and enjoyable things. But nothing is the be all and end all anymore. If I had to relinquish it and pick up somewhere else then that’s what I would do.
 




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Last reviewed December 2017.
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