Caring for someone with a terminal illness

Support for the carer

Support from family and friends can be crucial for someone who is caring for a patient with a terminal illness; but accepting help was not easy for some carers. Anne has had to learn to accept help from family, friends and neighbours. Before her husband went into a nursing home Anne had never lived alone and she finds some aspects of managing the home difficult.

David is grateful to friends who supported him immediately after he received Fiona's diagnosis of...

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Age at interview: 43

Sex: Male

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And this was before, this was actually immediately after the diagnosis so most people didn’t know it. And the two people who, the house that I was in, the two people there were very good because I had a huge howl, and it let an awful lot out of me and they were very kind, supportive, she actually comes from a kind of, a caring kind of profession so I think she probably understood my upset-ness. So doing that I think was a bit of a release in some ways. The other thing, and again it’s kind, it’s a support issue, you have lots of friends but there are certain people who during the course of what we went through I found more useful. But I don’t mean they’re better friends or anything…

No.

…but you will, I think you will find that there are some people who you connect with, or they connect with you and that is really important because I think that they have a, not a full understanding but they, the empathy, empathy is right there. And the thing with friends is that when you’re going through this it, before this I probably wouldn’t ask too much of people but when I was there I just put every, all those kind of inhibitions to one side, and in my mind I just said, “Look, I will ask people.” People were saying to me all the time, “You’ve got to ask us.”

And I did. And that’s really, really useful to do that. And people genuinely want to help. And as a result there, you, you find that there are friendships at the time which are so helpful. And if, if I had advice which seems a strange thing to say, if I had advice it would be, accept that, those offers of help, of friendship, and really don’t worry. It’s like, we’ve got children, if I needed the children to be looked after, straight on the phone and just ask someone. Before Fiona was unwell I’d have found that difficult, I was imposing.

People want to help. They genuinely do. And that can be very helpful.

One of Roger’s sons moved in to help with care when he realised that Luise was deteriorating. John and Joyce’s family had always been close so John felt very supported throughout Joyce’s illness by their four children and ten grandchildren. Keith’s three sons took it in turns to stay while he cared for his wife. Julie had friends who did shopping for her occasionally. Several carers said they had been able to talk to friends about their situation, although Brian was careful not to talk about it too much in case friends got fed up. Friends reacted in different ways, some being more able to provide support than others, and Peter (Interview 06) had been disappointed that so few visited his sick friend.

While family and friends may offer to help with care there may be some aspects of care which prove difficult or sensitive. Lynne’s daughter helped Lynne care for her mother but didn’t want to do the more intimate tasks. Jacqui had a care worker to do all the personal care her husband Terry needed when Terry’s younger brother stayed while Jacqui had a holiday. Sarah’s brother would occasionally stay to look after their parents while Sarah had a holiday. Maggie organised a network of friends to sit with her husband so she could continue working.

Sue describes her family's rota to care for her mum and dad.

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Age at interview: 63

Sex: Female

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Would you, did you think of yourself as his primary carer or would that be your mother?

I think Mum would have been primary carer because she was there most of the time, 24/7, but she got, if I can give you an insight. We got to a good rota - I don’t know how we’re doing - got to a good rota. What used to happen, Mum was very independent, still liked to go shopping, so my younger daughter would go in Monday morning after she’d dropped my granddaughter off at crèche. So Mum would have a window of four hours to go to the local supermarket by taxi, get the shopping, have a coffee and that’s it. And then my granddaughter would stay with, my daughter would stay with my dad, because he couldn’t be left at all, you see. And then my daughter would stay with Mum and have lunch, and then Mum would have Dad on her own Monday afternoon until the carer came most evenings. Tuesday, he went to the day centre so Mum was always out all day, and one of us would go in Tuesday tea-time and that would be our night of staying. Wednesday was probably the only day that Mum didn’t see anybody and was, unless we called in because I had a long day teaching, both my daughters were doing their different things with children. My sister would maybe come Wednesday night if she could, because she was still working at the time. Thursday, my other, eldest daughter went in and would give Mum, Mum would go out all day Thursday and my daughter would stay with Dad. I would relieve her in the afternoon and stay in the evening, and Friday Mum always had her hair done so that continued. So we feel, although Mum moaned a lot, her life, apart from the time she was with Dad, didn’t change a great deal. We were trying to get her to still do the things, and I think that’s very rare for that to happen. I mean I would say my daughters were, they came up trumps. They didn’t have to do it and they were very good.

Yes, so the whole family mucked in.

Yes.

That’s great.

We did, yes. Even the son-in-laws did when they could, they would go round and see Dad and, you know, sit with him.

Dick was amazed at how people in the local community rallied round to support him and Di. The...

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Age at interview: 55

Sex: Male

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What I need to say was that - friends. We couldn’t have done it without the help of friends. They were amazing utterly, utterly amazing. Fortunately I’m in my fifties, Di was, Di was nine years older than me. She was sixty four. So we had quite a lot of friends who were retired, who could come over. And friends who made time who were working but made time, made lots of time for us. And just people in the local community you know, people offered their help everywhere you know, practical help. Some insisted on, on financial help as well. Some were very generous in all sorts of ways. You know, people we hardly knew, people we’d just met in the street and said hello to but we hardly knew just rallied round.

Two people when we were over in the flat and didn’t have a washing machine people organised themselves into rotas to, to do our washing for us. It was just, just amazing. It changed the way that I thought about people you know. And Di’s big thing was always about community and, I began to understand things through her eyes over a matter of time. It just has completely changed the way I see the world. You know, we're rushing around all so competitive and sort of all having to meet our own individual economic needs. And then people were just abandoning their own interests and just rallying around all everywhere. It was just amazing.

Henry's men friends asked him out for meals and chats. His sick partner Jane had a network of...

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Age at interview: 63

Sex: Male

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The people were very aware of what I was going through, you know, because Jane and I were in a fairly new relationship and, you know, we were very, very close and, you know, it was sort of one of those things that was working very well and everyone thought it was very sort of tragic and terrible bad luck that this had happened. When we’d sort of both found unhappy, happiness after a, for both of us, quite a long period of unhappiness, and so some of my men friends would ask me out and take me out for a meal and chat it through. This is when I was at work during the day, so I would sort of meet up for lunch. And equally, Jane’s girlfriends could not have been more sympathetic or more supportive or helpful. I mean they were they were brilliant, yeah.

We were exceptionally lucky living in that funny little neck of the woods in London, where everybody is, there’s an enormous sort of network of very good friends who will go out of their way, and the support that Jane’s friends gave her was unbelievable, absolutely incredible. People would turn up, you know, knock on the door and they’d bring round huge suppers for us all to have, and Jane would be brought downstairs, and they’d just deliver up this fantastic food. And people came round every day with things, food and presents and flowers and make-up, you know, and it was absolutely brilliant the, that side of it.

Heather enjoyed having visitors but found some stayed too long , which made her feel...

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Heather enjoyed having visitors but found some stayed too long , which made her feel...

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Age at interview: 66

Sex: Female

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He used to love ‘News 24’ and I didn’t like ‘News 24.’ I got fed up with it so I used to go in the other room and watch the soaps but he would call me because he said he was lonely, which obviously he was. You know. People used to come and see me. I don’t know whether it’s a man thing but men didn’t seem to visit. People came to see me not Bill and I think he used to resent that a little bit.

And I think I had various friends that used to come. Some used to flit in and out, keep me amused with magazines, be here for half an hour and that was great. And then there’d be other people that would come and sit all day and I’d think, “Oh, will you just go.” And then he’d call me. He’d need the loo and they’d say, “It’s alright. You’re my friend. It doesn’t matter. You go off and see to him.” Well, I could be an hour looking after him when he needed to go to the toilet and I was, it made me uncomfortable because I was aware that this person was sitting in the other room, and I really think they should have got up and go but I was too much of a coward to say, “I think you should go.” But I suppose they were just trying to be kind. And then we had other people that used to come from a long way so they’d stay over. That was really hard because he must have felt really out of it, because we three of us would be sitting ‘round the dining room table and he’d be having his meal on his own. Because we couldn’t all eat in the same in right in the bedroom.

No.

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, 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. So, you know, it’s, it was visitors were quite difficult. It was lovely to see them but it was lovely to see them go and leave us to our own little world, which we seemed to be in a in a little capsule on our own.

Being a carer can limit social activities and put pressure on relationships. Emma recalled how she felt ‘very removed’ from her colleagues when she visited the school where she used to work. Susan feels lucky that her husband has been so understanding and supportive while she has cared for her parents. Ruth’s husband has also been supportive and helped with her mother’s care. Sometimes visiting relatives can cause upset' Cassie remembers how frustrating and upsetting it was when her brother and sister would visit and criticise how she and her mum were caring for her dad.

Some family members live a long way away and while some travelled long distances to help on a regular basis, others found it difficult to offer frequent support. Saba found it stressful trying to help care for her mother as she had to commute from her work in Germany. Her mother’s care worker only visited for an hour one day a week so her father had to manage with whatever support she and her brothers could give. Una’s son lives in the United States but has been able to visit and help with practical things around the home; he built a deck so Bill can have level access to the garden.

Passing information around the family can be time consuming. Lesley’s sister-in-law had taken over the job of keeping everyone in the family informed of David’s condition. Peter (Interview 33) didn’t want to be constantly on the telephone, so set up an email group to keep friends informed about his daughter’s condition.

Some carers found attending support groups helpful because it allowed them to meet others in a similar position. Brian attended cancer support group meetings that his sick wife chaired, and realised that he wasn’t alone. He was always surprised when people asked how he was, as he doesn’t expect people to worry about the carer. Sarah enjoyed meeting others at a carers support group and attended the occasional manicure or head massage sessions they organised. Tricia was surprised when the council sent her vouchers for various ‘pamper’ sessions because she was a carer. Lesley feels the support of Myeloma UK has been invaluable; she phones them with queries regarding her husband’s treatments.

Una met a befriender' through the MND Association who supported her as she dealt with many...

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Age at interview: 62

Sex: Female

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The MND Association has been fantastic, the befriender I have, I mean we actually like each other so apart from her role that has been amazing. The hospice ran a carers course and on that I met two other women whose partners, whose husbands had MND, and we’ve sort of stayed in touch, two of us have stayed in touch and that sort of support was quite good.

I think on the, on the course, you know, you get the feeling that everybody’s in an ideal relationship, their circumstances are fine, you know, and they’re just doing this carers thing on top. And of course life isn’t like that and through my befriender I know, you know, you have a, a whole lot of emotional issues to deal with. You know, your relationship may not be at the highest point it’s ever been. You may have feelings that make you feel quite humble because you don’t like the feelings that you’re having. But, we’re only people and people do have those feelings and other people have those feelings, and I think that has been helpful too.

Professionals were also a support to carers. Sue’s GP phoned and offered to call round after surgery any time Sue was worried. Lesley describes her GPs as ‘absolutely magnificent’. Whenever she rings up on her husband’s behalf they always ask how she is, which she feels is very important. Emma recalls early arguments with her mum’s GP, as she expected him to know more about Motor Neurone Disease than she did, but as time went on their relationship improved and they could discuss her mother’s care constructively. Anne was glad that when she and her husband moved to be closer to their daughter they were able to register with a GP who had experience of her husband’s rare condition.

Carers often accompany patients to hospital appointments. Their experiences of interactions with hospital staff varied with some carers feeling valued and included in all the discussions, while others felt undervalued and ignored.

Although he represented continuity of care, Roger found communications with him as carer were not...

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Age at interview: 59

Sex: Male

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As far as the communication was concerned certainly, I think it was best at the top and it was best at the bottom. The consultants, doctors, these sort of people - excellent. Clearly they had received training in communication skills and knew to ask if we had questions to ask etc. I felt that ward staff, people like this were very good. They may not have had the training but they just did it instinctively, incidences where they were concerned for my welfare. Now I was there obviously to care for Teresa, so in caring for me they were caring for her too. But hospitals are, are not supposed to feed relatives but many of the nurses made sure that I didn’t fade away in the chair.

But because I’m a relative, I’m not a healthcare professional, some people would ask, awful lot of people would ignore, tolerate is a word, you know. I was put up with. I was swept around, I was, you know, moved to one side. But other people actually recognised that I was actually part of Teresa’s support and treatment care team and treated me as such. And usually the times they found out that I could be the most valuable was at the times when they suddenly found things or something had gone wrong, because I actually represented continuity. I was the one that was there all the time. I’d heard what every doctor had said. I’d heard what every physiotherapist had said and all the other professionals that had interfaced, what their views were. I had seen where the breakdowns in communication had occurred, I had seen where the notes had gone missing for a time or somebody had said something and not put it in the notes, because I was maintaining my own notes. But I doubt very, very few carers, relatives, whatever, would ever go to the trouble of maintaining contemporaneous notes over a period of months.

Janet was offered the opportunity to talk to the Macmillan nurse. Before her mother went into the Macmillan unit Ruth felt she had no one to talk to, but there she found the staff very supportive. Community palliative care nurses, specialist nurses and Macmillan nurses can provide support and advice for carers as well as their patients.

Heather had a close relationship with the Macmillan nurse and the respiratory nurse who visited...

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Heather had a close relationship with the Macmillan nurse and the respiratory nurse who visited...

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Age at interview: 66

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At the time, were you did you feel you were able to kind of express your feelings about, about caring, about Bill’s illness? Were there times you felt you could kind of express all that?

Yes, I used to talk to the Macmillan nurse. She was brilliant, and my friends. I think the Macmillan nurse was the only person really that knew, and, and the respiratory nurse, although she had such a huge area to cover that we didn’t really see very much of her, but she was always at the end of the phone if you needed her. She would always ring back. But I used to feel sometimes, “I’ve got the Macmillan nurse, why do I want to be bothering another nurse?” But it was because she was the specialist nurse in his condition I guess, whereas the Macmillan nurse is obviously a cancer specialist. Yeah, I was able to tell them. I think they, they realised. I mean they got to know Bill because it was so long and they got to know they got to know he wasn’t always easy, and they I think we had such a close relationship with, well, I had such a close relationship with the Macmillan nurse and the respiratory nurse that I was able to sort of tell them. And, and they, they sort of never said anything bad about Bill, but I just knew that they knew that he wasn’t always easy.

And that was a comfort.

And it was a comfort to me.

District nurses may be part of the patient’s home-care package. They too can offer support and advice to carers, and help to organise specialist equipment or services to help them. Providing care in the home can be isolating for the carer so regular nurses’ visits can ease the sense of isolation or loneliness. Some carers whose sick friend or relative attended a hospice found it helpful to talk to staff about their feelings or concerns. Katie found the hospice staff were good at listening and allowed her talk things through. Some carers find that counselling can be supportive. Simon used a free counselling service at the hospital.

Last reviewed December 2017.