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Caring for someone with a terminal illness

How carers use and feel about having time off (respite)

Caring for a relative or friend with a terminal illness can be physically and emotionally exhausting, and several carers we spoke to were able to obtain some short term, temporary relief from their caring responsibilities at times. This so-called ‘respite’ allowed carers a break and some time to themselves. ‘Respite care’ for their relative or friend was provided by the hospice, nursing home, Crossroads, social services or from another family member.

Some carers had a couple of hours of respite time a week, others a few mornings or a day a week and some were able to use residential respite care to go away for a long weekend or for a holiday.
 
A few carers used the time they had away from their friend or relative to do some exercise, which they found beneficial. Several did the shopping, banking, or met up with another relative or friends. Others were able to catch up on sleep or just to potter around the house.
 
Fiona, who was looking after her mother, arranged for the two hours respite care she had a week to be in the middle of the day to give her a break when she was starting to get tired. Jane’s husband wanted her to have time to herself so he spent one day a week at the hospice; Jane used the time to visit the hairdresser or have a relaxing massage.
 

The two hours respite care that Fiona had a week while looking after her mother who had cancer...

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Age at interview: 55
Sex: Female
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The other thing I didn’t do straight away I think was I was offered two hours respite by the palliative care team and that was marvellous [laughs] because Mum had another face, which is important. We had sort of carers coming in to help with her personal care but they that was very brief, these were people we didn’t know terribly well. Very nice people, very willing and helpful but they tended to come in, do what they had to and leave. So I couldn’t sort of guarantee they’d be with Mum an hour so I couldn’t pop out to the shops or anything. So I didn’t find that part of it terrifically useful, particularly, as it didn’t, well, it couldn’t possibly fit in with what when mum wanted to get up and when mum wanted to go to bed. You couldn’t fix a time for those sorts of things so it was that that I didn’t find that as useful but the two hours respite during the day, that was a time I could have where I could go and get things organised and I didn’t have my focus on Mum. So and that was that was really, really very useful. So in the end I got one of the carers to come in and do what someone that had been looking helping mum with her personal care for a very long time, I got her to come in and do lunch for her and spend two hours with her and I put it back to back with the respite. So I could go out for a whole four hours a week [laughs].

Which was very useful, yeah. And I wish I’d actually, organised that sooner.

Can you tell me how you found that, having that care, that respite care? How was it for you?

Well, it was essential really [laughs]. I didn’t think it would be, you know. I thought it would be a nice break for Mum but as it turned out, it was a very good break for me. I mean I could go off and have a nap if I wanted or sit, you know, by the sea or, you know, have some time, you know, shopping, you know, where I had a bit more time, rather than, you know, hit and run [laughs].

Yes.

Sort of shopping I could actually, you know, plan things a bit better, you know. So it gave me it gave me a good, good break and it was in the middle of the day. In the middle of the day seemed to be better for us because I think we had, I felt we had sort of getting up and going to bed sort of fairly well organised. But in the middle of the day that was when I felt quite tired because I hadn’t had sleep and Mum would either be asleep or, or I’d be making her meals or that sort of thing.
 

Some carers used respite care to go on holiday. Their relative was able to stay at the hospice or nursing home, or was looked after by another relative. While the carers we talked to recognised that they needed to take time away to have a break themselves, many said they felt worried that something might happen while they were away. They also said they felt guilty that they were having a break while their relative was being looked after by someone else.
 

Katie found it difficult to switch off when she and her husband had a weekend away from caring...

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Age at interview: 43
Sex: Female
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We managed to go away for a weekend but actually, I found it incredibly difficult because one of Sarah’s sisters came to look after everything over that weekend and she was, she did a fantastic job but she they did phone me a couple of times and just as you’re starting to kind of relax I’d get a phone call and it’d be, “[huh] What’s happened?” So it was incredibly difficult to switch off, even though we were away. I was constantly thinking, “Is she all right?” It was still very, it was just before they managed to get the pain sorted as well so yeah, I just knew I kind of knew what was going on at home. I knew what it was like at home and I knew what would be going on here and how stressed my sister-in-law would be in my role and yeah, it’s difficult to it’s difficult to really take a break from it. 

 

When Una’s husband went on a holiday to Centreparcs organised by the hospice, she felt lonely...

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Age at interview: 62
Sex: Female
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So how do you feel when Bill goes to the hospice?

Well, he’s been, well he’s been twice to the unit for respite and he’s been once on a holiday with them. They actually take ten or twelve patients to Centreparks so he’s, had that. The first time when I came back I felt terrible, I felt, this is the rest of my life, here’s this empty house and it felt awful. And I suppose that’s what I got, have to get used to really. I mean as the disease progresses you get used to doing things on your own that you would do as a couple, go to a wedding, go to somebody’s party, all of those things. It’s not easy, but, you sort of do it for both of you but, you know, you know that this is your future life. So there’s sort of that, and then you know that because he’s in a different setting physically the logistics of doing everything, the loos, the showers that are different from at home and you hope that he’s not losing, dropping down a level by things being different or easier. I mean for example we have stairs at home until we had stair lifts and it was important that he got some, he kept up his stair [laughs] going up and down a little bit when he was in the hospice and stuff. And so there’s just that element to it as well.
 

A few carers thought respite time was also beneficial for their sick friend or relative in terms of social contact with the outside world. However, others had their feelings of guilt about taking time out compounded by their friend or relative reacting badly to being taken out of their familiar setting or unfamiliar staff coming into the house. Sarah’s father, who suffered from dementia, could not understand why a stranger came into the house to prepare his tea. Tricia felt very low when on a couple of occasions her mother, who had dementia, refused to attend the day care service that had been arranged for her.
 

Georgina’s mother stayed in a care home a couple of times while Georgina had a long weekend away....

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Age at interview: 47
Sex: Female
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Are you the only the only daughter?

Yes.

The only child. Yes, so did you feel on occasions a weight with the responsibility that you took on for caring?

Every now and again sort of frustration. It’s a horrible thing to admit but you do because sometimes you just want to whiz off and do your own thing and sometimes that wasn’t always possible. But I felt guilty when I had to start putting her into respite care to have a holiday. I thought, you know, I didn’t really like doing it and people were saying, “Well, you should do it every other, you can do it every other month.” And I thought, “I don’t want to do it every other month. I’ll do it now and again, maybe a couple of times a year.” “Well, why don’t you just do it.” “Well, I haven’t got anything to do that that month.” “Well, do it anyway.” “Why? I’ll only come and visit her every day. What would be the point?” Unless I had a holiday to go on, friends to visit, there was no point for me. I would do it when I had to. They were wonderful there and there was my, my original [laughs] my original ethos in this was that I would find a place where she was happy with respite and, eventually, when I could no longer cope with dementia maybe that would be the place where she could go as a care home because she would already know it and I would already know them. So there was logic behind this as well. As it happened, she only went in about three or four times in the two years preceding her diagnosis. And, and the first time I phoned every single day and felt dreadful about having gone and I only went on a long weekend to Scotland and I didn’t leave her in the whole week. I took her in the day before I went to Scotland and picked her up the day I got back [laughs]. So but I thought, no, no, you know, I’ve got to trust these people and a week’s a week. So it wasn’t easy. It wasn’t easy at all.

No.

But she did enjoy it there. She did get used to it. She’d complain about the some of the people, some of the people she’d like. She’d always complain about the food but that was already the start of something else we didn’t know about. She might have complained about some of the food anyway but [laughs] ‘cause it’s not, you know, it is very difficult, very difficult but, yeah, it was tough, tough saying, “I’m going to leave you in this place and go off and have fun somewhere.”
 

Carers had different views on the amount of respite time they needed. Poppy didn’t want to leave her father who had only been given weeks to live following his diagnosis of pancreatic cancer. She said she was “dragged away” a couple of times and felt very anxious about being away from him. Savita was grateful for the extra hours of respite care she had been given from social services because caring for her husband, who has Motor Neurone Disease, leaves her very tired. Fiona said that the two hours respite care she had a week from the palliative care team was very useful and helpful.
 

Savita is grateful for the extra five hours respite time she has been given by social services....

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Age at interview: 60
Sex: Female
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What I am getting is I started getting this since November only, you know. Four hours a week from an organisation. Can I?

Yeah.

Can I, Crossroads. So and I can manage the four hours, whether I want it in one go or whether I want it split or whatever. So they’ve been helping me and then that’s how then I go out, do my bits and pieces, my shopping, my, you know, my appointments, my banking whatever. Obviously, it’s a struggle. It’s not enough. And then again last week, my social worker then agreed and they’ve given me an extra five hours a week now. So I’ve got nine hours a week, which I haven’t started using them yet because it was only on Friday that I found out they’re going to help me out there.

It’s very hard otherwise, you know. You just day in day out. It’s just the monotony of the, the tasks. Sometimes I do it happily and other times I do get angry and, and I sometimes think that he’s playing up, you know, deliberately but I know he’s not and he can’t help it but that’s how I feel sometimes [laughs]. So it is hard. I think it’s nice if you have somebody to share. You know, even the little daily routine of suctioning like, you know. Sometimes he needs suctioning every half an hour, sometimes it’s every ten minutes, sometimes it’s for a couple of hours there’s nothing. So yes, you can relax but you can’t really relax because you don’t know when that person’s going to go off, when he’s going to call you. So you, you have to be on your toes all the time really.

Do you take any time out for yourself to do just for you as opposed to your jobs list?

If there is any time then I do things like going and meet with friends or just, sometimes I might just go upstairs, you know, even if they’re here, I’ll just go upstairs maybe have a sleep or do my things. But there’s not much time for that. Maybe now with the nine hours, yes, there’ll be more. Oh, yeah, recently I did a [tut] I did a French polishing course so [laughs] so I managed to get on to that and that was organised by the Carers Association. So previously, I haven’t been able to go any of these courses or anything. From time to time they organise things like days out or, you know, for the carers so I was able to do that and they were telling me that they do a relaxation sessions once a fortnight or something. So I’m hoping I’ll be able to do that now with the extra time, yeah.
 

Although time away was much needed, several carers said it was difficult to “switch off” because they were worried about their relative. Brian, whose wife has cancer, said that it was when he took time out to go running that he thought about things.
 
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When Heather took time away from caring for her husband she was afraid that something might...

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Age at interview: 66
Sex: Female
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We did have the carer’s centre supplied us with a sitter and he was a guy that had also been in the RAF so he and Bill had a little bit of something in common. And he was a lovely man and I felt quite safe because he’d been a nurse in the RAF so I felt quite safe going out and leaving Bill on his own with, with this guy. And but I used to get in a panic.

I knew I had two hours and I used to have to try and go down to the town and do the banking, any shopping, the supermarket and I’d be constantly looking at my watch. Looking in my bag to see where my car park ticket was. Looking in my bag to see where my car keys were. It was it was like it was lovely to get out of the door but I just couldn’t, I had to be, I felt I had to get back in to feel safe again because I was always afraid I wouldn’t get home, something would happen to him. And it took a long a long time to get over that. Even after he’d died, I used to go out and I used to used to feel, “Gosh. I’ve got to dash home. Oh no, I haven’t.” And then I’d be home anyway because I’d think, “Oh, I’ve done what I needed to do. I’ll just go home.”
 

Some carers who only had a few hours of respite care at a time said they rushed around in the time they had off and tried to get everything done in a hurry. Susan now made decisions very quickly when out shopping whereas before she would have spent hours looking at things and deciding what to buy. At first, Jacqui’s husband was frightened to be on his own and so Jacqui either didn’t go out or she only went out quickly for a short period of time.
 
For more information sources on respite care see our 'Carers' section in 'Resources'.


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Last reviewed December 2017.
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