Londoners’ experiences of life-changing injuries

Support after acquired disability from carers and helpers

People varied in the level of care they needed when they returned home from hospital or rehabilitation. Some had paid carers while others were cared for by family members such as parents or partners (informal carers). Informal carers could receive Carer’s Allowance. Some people regained independence while others continued to need care and support.
 
Carers helped people with a variety of things, including housekeeping, shopping, cleaning, cooking, doing physiotherapy exercises, driving, general tasks, like lifting and carrying things, and ensuring the person was safe. Some people needed personal care with toileting, washing and dressing. Carers also helped to deal with legal and official processes, e.g. communicating with solicitors and banks on the person’s behalf. Another important part of caring was psychological support. Bill said that his wife “just being there” was important. A few people could become angry or say socially inappropriate things, and informal carers talked about monitoring and managing unreasonable behaviour.
 
Some people directly employed formal carers using Direct Payments (see ‘Benefits and concessions’). They advertised the position, or contacted care agencies, and interviewed and appointed their carers or helpers. Others had carers organised and funded by their primary care trust or local authority. Some had several formal carers on rotating shifts. One person was made a ward of court and his care was organised by an agency.
 
A problem with agency carers was a lack of consistency in staff. It could be time consuming trying to maintain appropriate levels of care.
Formal carers sometimes lived in the family home. This could be intrusive, but it allowed people to keep their relationships separate. This was important because, as Simon said, having his wife as his carer “put quite a strain” on their relationship.
It could be hard to get used to partners becoming carers. Rob said, “It’s difficult. She’s my wife and, when I was first injured and I couldn’t really do a lot for myself, it was almost like she’d become my mum” but he would not want “an outside person” caring for him.
In general, people had mixed feelings about needing care. On one hand, it enabled them to re-establish their lives after injury and regain independence. But, for some, it felt like they no longer had time on their own. They thought they would always need some level of help and support, and, as Rob said, this “gets quite difficult because you need your own space”.
Life post-injury was also an adjustment for family members who became carers. Learning to care for the injured person was often “one big learning curve”, but some of the people’s partners had a nursing background which helped. As well as caring for the injured people, carers sometimes had to look after others too, including children and elderly parents. Caring could have an emotional and physical impact on carers, some of whom had their own physical and psychological problems. Some felt they lacked support. For instance, a woman whose husband had a brain injury, described herself as “his wife, his maid and his secretary all rolled into one”. She felt there should be more support for carers like her. Other couples described supporting each other throughout the experience of injury and beyond.
For more see 'Relationships with partners'.

Last reviewed October 2015.

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