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Living with dying

Care at home for people with a terminal illness: nursing

People usually want to stay in their own home as long as possible. This can often be arranged with the help of social services and with care from family, friends, GP, district nurse, and community-based palliative care services. Community nursing and palliative care are usually arranged through the GP, either directly, or after discussion with social services (see 'Care at home: Social Services'). Macmillan Cancer Support funds Macmillan nurses for people with cancer and Marie Curie Cancer Care can provide 24 hour nursing care for people with cancer and other life-limiting illnesses at the end of life. Most hospices focus on keeping people at home, and may provide short-term intensive home support.

Almost everyone made positive comments about the medical care and support provided by nurses in the community. For example, a woman who had bowel cancer described the district nurses as 'absolute angels'. After she had left hospital a district nurse came daily to do her dressings.

 

Thinks the district nurses are absolutely wonderful.

Thinks the district nurses are absolutely wonderful.

Age at interview: 75
Sex: Female
Age at diagnosis: 74
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But the district nurses I'll praise. District nurses are absolute angels. I had a lovely one and she used to come everyday to do the dressings at home and quite different [to the hospital nurses]. She had two pieces. She undid a pack, and one she put all the dirties on and one had all the clean and she washed her hands, and she is lovely. 

She still comes. She says she loves coming because I'm always cheerful and we have a nice little chat. I don't need her now because I don't have dressings, but she'll come or ring me about every couple of weeks. So the district nurses I think are absolutely wonderful.

A man, also with bowel cancer, mentioned that the district nurse called the day he arrived home from hospital. She was able to reassure him and help him with his colostomy. Another man, who had oesophageal cancer, described the district nurse as 'very supportive'. She found him an inflatable mattress to prevent bedsores.

At first, some people hesitated to invite a hospice nurse, palliative care nurse, Macmillan or Marie Curie nurse into their homes because they associated palliative care and hospice care with death and dying. However, people were always pleasantly surprised by the kindness, help and advice offered by these nurses, and learnt that the role of the palliative care nurse covers more than death and dying.

 

Explains that the hospice nurse has been very helpful and suggests that people should not be...

Explains that the hospice nurse has been very helpful and suggests that people should not be...

Age at interview: 64
Sex: Male
Age at diagnosis: 62
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When [name of husband] first came home and [name], the hospice care nurse, wanted to come round, at first he said 'Oh no, no, no' because hospice care, or Macmillan is synonymous with, "That's the end," you know, you know my last.  But when we persuaded him to let her come, he was so glad, because she has given him a different outlook, you know. She explained to him that just because it's hospice care it doesn't mean you're on your last legs.  But she's the one who can help with things just outside of the medical -

Yes.

- the practical care.

Yes.

She's been so helpful. And I would say to anyone, don't be frightened, just because it's hospice care; don't be frightened to let the person in.

Hospice nurses, palliative care nurses, Macmillan nurses and Marie Curie nurses seemed to be available at any time. One nurse told a man with cancer of the pancreas that if he needed her she would come straight away.

A woman, who had lung cancer, had a fall in the street. Neighbours took her home, where she rang the Iain Renee nursing team at the local hospice. They contacted her nurse, who came at once. Even though she was seriously ill and lived alone, she felt secure because someone was always available who could help her.

A woman who had leukaemia was very glad to have the support of a hospice nurse, who often visited her at home. The nurse could be reached on her mobile phone and could help at any time. The woman said that the nurse made 'wise' comments, such as 'take one day at a time', and passed on useful information. For example, she told her about two firms that could deliver frozen food and hot lunches. She also explained that the local pharmacy would deliver prescriptions.

 

A nurse from the hospice gave her very useful advice.

A nurse from the hospice gave her very useful advice.

Age at interview: 63
Sex: Female
Age at diagnosis: 61
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And another nurse told me that I could apply for palliative care through my GP. And another nurse told me about Cancerbackup which is a telephone number that you can ring and ask any questions about your form of cancer, and also they send booklets out that are appropriate to you. 

So we did apply for palliative care, and in due course a hospice nurse came to see me here in my own home and she explained that she could help with things which weren't entirely to do with my treatment, but they would perhaps help to make life a little bit easier for me in the circumstances that I had found myself in very unexpectedly. For instance, I was in a wheelchair before anybody knew what was wrong with me and fortunately I've managed to get much better now at moving about through the treatment I've had, but at the time I did need quite a lot of help and support of that kind.

Now, the sorts of help that she's been able to give me... At one stage I said to her that because I couldn't stand up and make any meals, my husband was doing it all and she pointed out that there were two things in the neighbourhood that could help with that. 

There's a firm that will deliver you two weeks supply of frozen food and there's another one that will supply hot lunches. And we actually have the hot lunches now, even though we always used to have our main meal in the evening, we don't now, we have this hot lunch, which has relieved my husband tremendously, because for a year he did do all the cooking and then, because he likes cooking, but then it got just a bit too much for him, so that's what we do now and this was, you know, a suggestion from the hospice nurse. 

Now some of the suggestions are much more sort of to do with medical things - for instance, if I haven't got enough of some particular prescription then she has very close contact with the GPs and she can just get any prescription. And she explained that the local pharmacy will bring... will deliver the prescriptions, which you know, I haven't really known that a person like me could ask for that service.

Macmillan nurses were particularly appreciated because, unlike some other carers visiting people at home, they are willing to help with whatever aspect of practical or emotional support the person needs.

One woman, who had breast cancer, explained that her Macmillan nurse was extremely practical, a 'go-between' who managed to 'get things done'. The nurse helped to fill in forms and obtained useful aids for her husband, who was also ill. For example, she found a commode, and a bathroom stool and walking aids.

A woman with kidney cancer also found the Macmillan nurses 'extremely nice and helpful'. One nurse drew little diagrams to explain the aneurysm in her neck. This woman didn't want the palliative nurses to call on her regularly while she felt reasonably well, partly because she knew that they were busy with other people, and partly because she wanted to think of herself as much as possible as a 'fit' person. However, she was glad that the nurses were there if she needed them.

Palliative care nurses give emotional support as well as physical care. A woman with breast cancer was glad that she could vent her feelings when the Macmillan nurse called to see her. The nurse was sympathetic and supported the whole family in many ways.

 

The nurse gave the whole family much needed sympathy and emotional support.

The nurse gave the whole family much needed sympathy and emotional support.

Age at interview: 51
Sex: Female
Age at diagnosis: 49
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The Macmillan nurses and the hospice nurses; we'll do those first; there were sometimes... it was quite stressful at home and still can be sometimes because my family don't want to think about me dying and sometimes I get depressed about it and they don't like me being depressed and particularly my husband, it will set off a row or words spoken. And I can say things there or to my Macmillan nurse and they understand and I can voice my feelings, and vent my feelings about this and there aren't any recriminations and I've been heard and I've listened too and that's the support you know. 

I've found it really, really helpful because the family, the children, I mean the boys are twenty three and twenty one now and my daughter's coming up for fifteen, but they are of ages that they've not got the experience of life and they don't want to think about their mum being ill and my husband's much the same. He doesn't want to think about life without me so... But they can listen to those and they've heard a lot of it from other patients and know that it's... you feel well what they sort of say to you,' What you're saying is normal, and what you're going through".

So it's like a reassurance?

Reassurance, yeah.

You said earlier that when you heard the word Macmillan Nurse you thought well that's for people who are at the very end and you implied that you were kind of a bit put off about contacting them?

Yes, well I remember saying to this doctor who suggested it that, "Oh I thought it was just for those people who were you know, on their last few weeks dying", and she said, 'Well I think it's worth a call, you know, they do more than that'. And I've discovered that's true and they're there for the whole family which is... I mean most of the family haven't really used my Macmillan Nurse. She's met everybody. I think my daughter thinks she's another mum-type figure and so do my sons but you know, they know that she's around. 

My husband. I don't think he'll really mind me quoting him, and she came and met him and after she had gone he said, 'She kept asking me how I feel'. I said, 'Well yes, that's her job'. But they know she's there which is nice and she doesn't visit me that often now because she's got a big case load and because I'm going to the day centre, I've got support elsewhere.
 

Another woman, who had ovarian cancer, said the Macmillan service was 'absolutely brilliant'. She was particularly grateful to one nurse, who helped her find the right words to talk to her mother about her cancer.

 

The Macmillan nurse helped her communicate with her mother.

The Macmillan nurse helped her communicate with her mother.

Age at interview: 57
Sex: Female
Age at diagnosis: 52
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Yes, but it was very difficult with my mother. My mother was ninety and she believed that primary cancers can be cured, secondary cancers kill, and because it was advanced then I had a problem on my hands, and I didn't say anything that day or the next, but then large bouquets of flowers arrived so I had to break it to her that they were coming for a reason. 

So that is how I got through to talk to my mother, which was very difficult because obviously she would have been the one who would rather have had it than me, but I had a lot of help from my Macmillan Nurse because mum found it difficult to say things to me, so the Macmillan service was brilliant because I could talk to her about what mum could say to me or encourage mum to say things to me rather than just look at me as though I was sort of, not really a freak but, you know, just being lost for words, finding the right words. 

So Macmillan was brilliant, absolutely brilliant, and they still are. I still have the same nurse looking after me.

For more information see resources.

Last reviewed July 2017.

Last update August 2014.

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