Living with dying
Hospice day care
Hospices aim to meet people's physical, emotional, social and spiritual needs. The range of services includes pain control, symptom relief, skilled nursing care, counselling, complementary therapies, spiritual care, art, music, physiotherapy, beauty treatments and bereavement support. All this care is free of charge, often supported by a charity.
Several people with cancer felt that they were relatively lucky to have access to such resources, which are rarely provided for people with other serious illnesses. (Those with motor neurone disease, HIV and AIDs can often get hospice care, but not always).
Many people we talked to attended a hospice day centre for one or more days a week, sometimes over many weeks. Usually, a hospice has written criteria for admission. This policy identifies those patients for whom the service is provided. The patient's and family's needs are usually assessed before admission to day care (see also 'Insufficient hospice care').
A man with secondary progressive multiple sclerosis said that demand for places at his centre was heavy, but said that he might be able to increase from one to two or three days if he needed to. Some people spent time as in-patients too (see 'Hospice in-patient care').
Nearly everyone said that at first they were very apprehensive about attending a hospice, but had been very pleasantly surprised by the happy atmosphere and the wonderful support they received. Several said that the public image of hospices needs to change -they are definitely not dreary and gloomy places with people sitting about waiting to die. Rather, they are described as creative havens where people go to enjoy living and get to know others in an accepting and supportive environment.
Many of those who work in these settings have a firm religious faith and some have chapels or provide religious services for those who want to attend. However, this was not compulsory and staff do not push their religion on people who are not interested.
Some of the nurses at the hospice are quite religious but do not push it on those who do not want religion.
Some of the nurses at the hospice are quite religious but do not push it on those who do not want religion.
You laugh a lot when you go to the hospice. You spend a lot of time laughing. And some of them, the nurses, are quite religious and that's why they're doing it, but they don't push that down your throat at all. I mean they have the service but you don't have to go to that if you don't want to and I certainly never do. They provide all sorts of activities and because the one I go to is a charity if someone sort of wants to do something, if they can do it for you, they do.
You know, they... if someone says, "Oh I really would like to do such and such" if they can organise it, it's organised.
They have lots of different groups like I go to the creative writing group. I know there are other discussion groups and art groups and things, but the creative writing group... the tutor who runs that is absolutely fantastic. I mean, I don't think that group would be as good if it wasn't for her. She really has made this group - I think she's a wonderful tutor and a wonderful person, as they all are.
I have nothing bad to say about the people at the hospice.
A 51-year-old woman with breast cancer managed to find a hospice which had a special day for younger people. She found sympathy, support and medical help. She also tried various complementary therapies, such as art therapy, which helped her cope with the shock of the diagnosis. She enjoyed her days at the hospice, but found it hard watching others deteriorate and “pass on”. Another woman had been less fortunate - she found herself in the company of much older people, which she didn't like. Some of the other patients wanted to “offload” their problems onto her, making it even harder for her to cope.
She found the staff very supportive and enjoyed the activities but found it hard watching others deteriorate.
She found the staff very supportive and enjoyed the activities but found it hard watching others deteriorate.
I started in January last year and it was a bit weird to start with because there's all these sick people there and I think that's part of the process, learning to become an ill person rather than a well person that you've been all these years and you know, you have these images of day centres and everybody is sitting round in chairs but it was great.
Great support and I still go there and you're assigned a nurse and they are so supportive and sympathetic and I've done art therapy and I have acupuncture and they offer other alternative therapies and what I discovered quite early on after the second or third art therapy session, was that I've been in shock and once you've discovered that then you can go on to the next stage and it took me a long time to get over that shock but you are, you're in shock for a long time.
The worst thing about going there is that you do see people pass on and that is hard because again you are faced with the reality of why you are there.
So if you were talking to someone like I said earlier, about what help they should seek it, are you saying that you would recommend it?
I would yeah.
The contact with the Macmillan nurse and the hospice?
And the hospice and the other patients as well because they're very supportive. They know what you know. We're all going through the same thing in trying to cope with this disease and you know, as I say, the worst bit is watching people deteriorate. At the moment there is a lady who is great fun and she's not well and you know it makes me quite sad because she's a nice lady and I've known her for a year now and that is hard but it's part of being there unfortunately.
She would prefer to go to a day centre with others the same age as herself.
She would prefer to go to a day centre with others the same age as herself.
You see conversely a week ago I went to a day centre that we have here for cancer sufferers. It's literally just a day centre. You go between the hours of 10 and 4 and there are other people to talk to. But again on that day I wasn't comfortable because some of the other patients there wanted to offload on me, and tell me all about their situations and I couldn't cope with that. I didn't want to hear it and I didn't want to be involved in telling them about my situation. I tell you, I am just very confused. There must be younger people who are terminally ill like me but I don't know where they are.
I went to this local day care centre a couple of weeks ago for the day and even there, although I was told that some of the patients, that particularly on Friday, are younger they weren't. They were in their 70's at least. The trouble is we never see ourselves as old do we? That's the problem.
If we are in our 50's and 60's that is a generation isn't it? Our generation is different from people in their 70's and 80's.
Somebody somewhere must have information about younger people who are ill but I wouldn't know how to access that. I've got no idea who could tell me that.
A man with colorectal cancer advised other people to attend a day centre because he was sure that a day out could help people to forget their troubles. He had always found something to do, such as gardening, or a 'bit of joinery'.
He enjoys going to the hospice - there are always things to do such as gardening or joinery.
He enjoys going to the hospice - there are always things to do such as gardening or joinery.
Well it gives you things to do. I mean you could tend to just half the time just be lazy, just lay about the whole day like, doing nothing like you know, but going to the Marie Curie, they've always got something for you to do.
They've got extensive gardens. If you're a bit of a gardener you can do gardening. If you're a bit of a joiner, they have you making the seed boxes and there's various things for the women'
Another man said that if he wanted he could have a bath or a jacuzzi at the day centre, but he preferred to chat to the friends he had made since he had been there. He remarked that friendships can grow very quickly in this environment.
One woman had benefited from creative writing and poetry, which the staff at her hospice taught and encouraged. She also spoke about the love and laughter she encountered each time she attended.
To her the hospice is a happy, loving place where she has learnt to write poetry.
To her the hospice is a happy, loving place where she has learnt to write poetry.
That's right, that's right.
Do you think you do that because there's not that many people around to talk to?
It came to me, well I wasn't doing poetry first of all. I never think I could do poetry because I used to like it, and I... but I write. I was writing my life story from when I left Jamaica and then I revert back to my childhood and then I write it up to my illness, that's when I started. And then, as I said, at the day centre they said to me, "Are you going to bring some creative writing?" and I jumped at the idea. And she said to do poetry and I said, "No I can't do poetry" so she gave us the tree. "Write about the tree, write about the bed". And she said, "Look at the one who can't do poetry" and it started from there.
What does the hospice day centre do for people?
It's a happy place. For me it's love. You get love. From when you walk in until you come out its love. I'm not saying people are not people. You get love.
Who do you get the love from?
The staff. And as I said, really as a patient, although you may not sit and communicate that much we really. We really don't have time to communicate over illness, cos you've been laughing, you been talking you don't have time to discuss your illness. Really, So much going on.
What's going on?
Well, you have... you test your brain, you know, your IQ. Like, you know, every day you got something different testing you. What you remember from what you remember. Singsong. People come in and talk to you and sing for you, and the staff themselves sometimes you know. You get excited cos they're all dressed up in the Georgian days... It's exciting.
Good.
You love to go, you want to go. I don't miss one day. Not unless I can't go. I'm sick.
Another woman pointed out that when she visited her hospice she could have reflexology, try various crafts, have her nails done and hair 'titivated', have a drink, or simply sit and sleep. She also felt that the staff and the other patients had helped her to come to terms with her own impending death.
She can have her hair done while at the hospice or have reflexology or do crafts, or simply sit and sleep.
She can have her hair done while at the hospice or have reflexology or do crafts, or simply sit and sleep.
What about the hospice that you go to and what you do there?
Well, yes. We have reflexology.
We do crafts and what have you, whatever we like to do or we sit and sleep and we have our nails done and have our hair done if we need it. But I did have it done at the hair... at the...[hairdressers] when my daughter in law had a baby because she was off two or three weeks, and so they done it at the hospice but now she's back to doing it now and I like her to do it because if I'm not well enough to go to the hospice the next day I don't get it done.
So what they do now they titivate it about, and she washes it and rolls it up and then leaves me, and then I can just take the rollers out. So when I get to the hospice they... we laugh and say, "Come and be titivated today".
Staff and patients have helped her to come to terms with illness and with death.
Staff and patients have helped her to come to terms with illness and with death.
Would you say a bit more about how you come to terms with it and accept it? Because some people have difficulty with that.
Yeah
Would you like, would you like to talk about it?
Well I don't know. I can't really describe how I come to terms with it. I think going to the hospice helped me. I think going to the hospice helped me to come to terms with it. They talk to you and you see so many people in the same boat that they've all got the same thing and we all help such a lot that I think that does help you.
You're not alone. You know that there's some people off a lot worse than what you are. I mean there are some people a lot iller. I mean there's several patients have died since I've been going there but I think that is a hospice what gives you the strength to come to terms with that sort of thing.
Day centres do not appeal to everyone. Some were aware of people who had visited to look around and never came back. One woman said that she was not a 'day-centre person' because she did not want to do basketwork or painting and that she had plenty to do at home when she was well enough to look after herself. She also said that she didn't want to chat to others or know about other people's illnesses.
Although everyone who attends a hospice day centre has a serious illness, several people said that they tend to talk about other 'lighter' matters - perhaps being sensitive to others who are more unwell. However, this sensitivity, combined with being kept busy, could sometimes deter those who wanted to talk to other patients about how they felt.
Last reviewed July 2017.
Last updated August 2014.
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