Do carers, families and friends think about their own recovery?

In the Meriden Family Programme, we did a small study where we interviewed 12 family members to learn about whether they saw the idea of recovery as being relevant to them. It raised the following interesting information as to how this group of family members felt about the idea of their own recovery:

Did family members see recovery as relevant to them?

Interestingly, the family members generally did not see the concept of recovery as relating to them, and some struggled with the idea of ‘recovering from’ a loved one or their actions. They preferred ideas such as regaining control, accepting, coping, and moving on with their own lives:

• ‘Recovery for me means getting back to a lifestyle, which is maybe not the same as before the person you cared for became ill but at least allows you to manage life’
• ‘Acceptance of your loved one’s illness, and being able to cope with it on a day- to-day basis’

What prompted carers, family and friends to think about their own needs?

All but one person we interviewed mentioned that a particular turning point made them see things differently, and they started to think about their own needs. These were things such as such as:

• a health scare, being off sick, or a death in the family
• realising that others in the family were being neglected
• attending a course
• finding information that helped
• a professional recognising their caring role – ‘It was the first time somebody had acknowledged that I actually was the person holding it all together.’
• the service user becoming more independent – ‘I think, probably the turning point was when he was in supported, independent living and less dependent on my support, that I felt I needed to use that time, to invest in my own ‘recovery’… I started to … put my life back on track.’

These sorts of experiences led to them thinking ‘Life’s too short’ and that they needed to change and get on with their own lives too.

What helped family members to get their own lives back?

The family members we spoke to told us about the things that helped them to get their own lives back on track:

Some of these were practical:

• taking breaks, even for a day, and holidays
• keeping busy with other things – work, study, meeting friends, going somewhere different, having interests such as music
• looking after their own health – through exercise and a healthy diet
• making sure their relative had support when they were taking time out

Other ways of coping could be described as psychological or linked with a change in the way that the family member viewed their situation. These included:

• having a positive attitude and being hopeful – ‘I looked at it as a new chapter of my life’
• acceptance
• letting go a bit and detaching, and trusting that the person cared for can cope on their own – ‘They’ve got to do a little bit for themselves, otherwise we never let go. Not to absorb it all…I suppose be a bit detached.’
• taking each day as it comes

The role of support and education

Some found that talking and gaining support were helpful. One person mentioned going to a support group as ‘the beginning of my recovery’.

Healthcare professionals who encouraged self-motivation and independence in service users, provided therapy for the service user and carer, or offered respite to carers were also a huge support.

Others mentioned that a Carer’s Assessment and Care Plans providing clear and accurate information were helpful. Information, coping strategies, and signposts to useful helplines or services were extremely valuable to all the carers:

‘Knowledge is power … I think I’ve learnt a hell of a lot and I think I’ve got a bank of knowledge now that I dive into for lots of different things.’

‘Information, once I know what’s happening, what’s gonna be done about it, where to get the help …… it’s given me a lot of confidence.’

How health and social care services can support carers’ recovery process

Many carers spoke of the positive benefits of their caring role in terms of them becoming more resilient and confident. In addition they gave suggestions as to how professionals could help them. These included:

• Valuing, respecting, understanding them and being aware of the important role they play – ‘…  if I made a big request, it would be for them to be  a human being, a fellow human being really, and to regard me as a very important person in the process, because I’ve lived with this, so I’ve got knowledge, like they’ve got knowledge.’
• Professionals communicating more with them – responding promptly, being honest, listening, out of hours contact numbers – ‘Even when you can’t do anything for people, just tell them why you can’t do it.’
• Offering practical support and family-oriented services – greater access to family work and counselling, involving family members in the planning and delivery of services, mental health specialists in GP surgeries, more face-to-face contact with family members

Advice to others in the same situation

Relatives who were interviewed had some key bits of advice for others:

• ‘Acknowledge that you’re in this situation and try to be open about it’
• ‘Be informed – know your rights and what supports are there for you’
• ‘Look after yourself and don’t feel guilty about doing that’
• ‘Have hope and a ‘can do’ attitude.’