What carers do during respite
Carers described a range of activities in their four hours of respite but socialising or going out purely for recreational purposes were rare. It was perhaps surprising how frequently respite was used to do mundane, everyday tasks. Sometimes they remained at home and caught up on chores such as cooking, particularly if they were unable to do this when with the cared for. Many carers also used respite as an opportunity to go shopping or have medical appointments.
‘Well shopping, or whatever we have to… my husband has these, has to go to the doctor quite often and things like that, or whatever. You know. We carry on. I might be doing a whole load of washing or something… Yeah… Daily things, yes… it really is a tremendous help for us.’ Friend
Some carers did not stay out for the full four hours of respite and some preferred, at least sometimes, to stay at home.
‘I’m so exhausted sometimes that I don’t want to go out.’ Wife
A few did use the time for recreational activities.
‘… it’s good to be able to go to a movie or something… I did go and see a film – it just happened to work. It started at 8.15 and was finished by 10.15. So fantastic.’ Wife
Benefits for the carer
Carers often spontaneously mentioned respite’s positive effects but they were also directly asked if they could think of any ways they might have benefitted from the service. Carers used words like ‘vital’ and ‘God send’. One daughter expressed this very strongly:
‘I would just say – given me my life back and maintained my sanity. Because you need that out time, you really do. Yeah otherwise you’ll just go crazy… otherwise I would explode.’ Daughter
‘I don’t know what I’d have done without them. The few weeks that I’ve had them, because it’s given me a break.’ Wife
‘It’s four hours where I can go and enjoy myself.’ Wife
Some carers described respite not only as a break from caring but also as a means of literally ‘getting out’ of the house.
‘Um, a bit of relief I think. You know, sort of, to get out of these four walls and just to get away for a couple of hours.’ Wife
Just by leaving the house, respite could therefore be enjoyable and relaxing and could reduce the stress and isolation of caring.
‘Yes you need to – it’s terribly easy to become isolated – not, you know emotionally isolated – you know, you think I don’t want to go out because you’re so used to not going out - it’s very easy to become a sort of stick in the mud and not get stimulated…’ Wife
For some carers respite was valued because it meant that they could go out without having to take their cared for with them. This not only made life easier for carers but was also better for the cared for. It was striking how often carers used the time to do everyday chores but it is important to note that carers often took pleasure in the fact that they could do these chores without the cared for, whilst also leaving their caring responsibilities behind. One wife said:
‘… you know even if I went down to the supermarket, you know, and tootled around – you know I can go and do some shopping and I don’t know what time the shops in the mall shut but you can go and just do bits and bobs and it’s just nice not to feel always rushing.’ Wife
‘You feel, it just puts me at ease that someone, someone’s sitting with her.’ Grandchild
However, there were other less obvious benefits for some carers. Several enjoyed the opportunity to chat to the care worker and appreciated someone simply listening to them. One carer even suggested that it was a pity that she felt she should leave the house.
‘Yes, but as I say it was a shame really because it was a nice break for me to talk to her to be honest because, you know, when they’ve got dementia you don’t get proper conversation – it’s a mixed up, wandering conversation, you know, but no… no she was very good… Yes it was a kind of – how can I put it? You could chat about all sorts and I would. I didn’t go out straightaway unless I had to, or if I was messing about upstairs doing something and I’d come down to make a cup of tea or something then… you enjoyed the chat – she was so understanding and it was great, that was nice, you know.’ Sibling
‘I’ll have a cup of tea before I go and I’ll talk about the kids and this and that.’ Wife
The fact that the respite was there and at a regular time allowed carers to plan and spurred them into taking advantage of the break.
‘No it does and it sort of galvanises you into, you know, maybe climbing out of your jeans. And thinking can I talk about anything, except what I was eating. Or ‘Has he fallen over recently?’ No, no it does make you switch on to what is going on in the world a bit.’ Wife
Respite was sometimes seen as benefitting the cared for which could indirectly also have a positive impact on the carer. One carer commented that the care worker gave the cared for something else to think and talk about which had benefitted their relationship.
Ironically respite, although offering relief, also gives carers time to think about their situation which could be difficult but had helped one carer with her overall adjustment.
‘… because when you’ve got time to wind down, you’ve also got time to get upset, but it gives you time to adjust to what’s happening to you. I can’t explain, but it’s just. ‘Cause you’re so busy, when you’re busy, busy, busy, busy, concentrating on doing practical things, the good thing is you don’t think, the bad thing is you’re not relaxing. So when you get a chance to relax, you then get a chance to reflect, and that can make you very sad. But it’s also necessary, for you to mentally adjust to what’s going on… But I, I go through it all the time. It’s constant… I think it’s just very important to have that time away.’ Daughter