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.
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.
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.
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.
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.
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'.

Last reviewed July 2014.

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