Who cares for the carer when their loved one experiences a brain injury, from a stroke or accident? At Livability Icanho, our rehabilitation centre, specialist social worker Sally List supports carers with how they are coping with something that affects the whole family – and to find hope for the future.
What do you offer carers and family members?
Acquired brain injury often results in a ‘hidden disability’ because many of the injury’s effects cannot be seen and are, therefore, not easily recognised or understood by others.
A large part of my role involves carer support. Carers value being able to tell the story of what has happened to them and their family as a result of a family member experiencing a brain injury. My role involves exploring together with carers how they are adjusting and coping with new roles and routines for their family and for themselves.
The impact of a brain injury has been likened to throwing a pebble in a pond. The ripple effect expands to partners, friends, family, carers, work colleagues and the wider community. Carers may be trying to make sense of what happened when their partner had their brain injury and my role involves supporting them to process all the information and feelings around this.
‘I can still remember my partner suddenly not being able to talk, becoming really unwell – and not knowing what could happen next’ Carer
At Icanho, we seek to offer a whole family approach, providing ongoing emotional support and information around the impact of brain injury. This involves encouraging the adults of the family to model positive coping strategies for the children and to try to keep children’s daily routines as normal as possible. We encourage the family to involve the wider family network and the children’s school in what is happening – so that additional support may be provided as needed. We ensure that carers know to access financial support and welfare benefits, which is key. Signposting to other agencies, such as housing, may also be needed.
Where do you meet?
It is important that any carer support offered is flexible – as carers may be juggling their caring role with work, children or other commitments – so carer support is offered face-to-face at Icanho, or by phone or Zoom.
Tell us what carers and family members are facing when they come to see you
For most family members, life is not the same after a family member has a brain injury. Many family members and friends are thrust into the role of carer without warning; as one carer told me, ‘nobody gives you a manual’.
Together with the carer, we look at their needs for ongoing emotional support, developing new or existing coping strategies and how they can look after their own wellbeing and health too. They often need to talk about how their relationship, and the family’s relationships, have been changed by the experience of brain injury.
There can be powerful feelings around loss – loss of the relationship before the brain injury took place and loss around how the carer sees their own identity now and what the future may hold. There’s time and space around supporting them with adjusting, with issues like ‘who am I now?’. It is important for families to be supported so that they can draw on their unique strengths to develop resilience, find positivity and cope with these changes.
The practical and financial challenges for carers and families should not be overlooked and can be a source of ongoing worry for carers. Those who were working when they sustained a brain injury may wish to return to their employment or look at how a different work role may suit their needs. The financial losses for a family can be considerable. One carer fed back to me recently that ‘in the hospital they promise you all the services will be there when you get home – but they are not! You get home and you fall into a great big pool.’
Carers can feel isolated because what they may want to express to others is a calm, positive outlook, not wishing to burden other people. Especially after a few months, they may have to deal with other people saying things like ‘he’s doing so well’ or ‘she’s looking so much better’, whereas the carer feels things are much more nuanced. Often even family members or close friends don’t perceive some of the changes in the person with the injury.
Most of us take emotional and mental health for granted and only focus on it when problems occur. But like physical health, it requires attention to build and maintain. Caring for someone can be stressful, and it is important that carers feel they are able to maintain their own health and wellbeing. Many carers tell me they feel they have to be well so they can care for their partner and I support carers to feel able to take forward any health issues they may have.
What do you offer carers?
Caring inevitably involves adapting to circumstances due to the unpredictable nature of the effects of a brain injury. Some carers tell me they feel they are ‘suddenly in the job of being a carer when you haven’t been a carer before – you are taking on a new role and responsibility that you have no training for’.
‘I’m just a carer now – I’m not his wife’ Carer
Sometimes it’s easier to focus on the practical details; for the carer to be able to stay attentive to their relationship with the family member with a brain injury, amidst all that change, is far from easy. In my role, I may be the only place where carers can really express how they feel, and that can be anger, sadness, loss and confusion about their role and identity. I’m there to listen and give them emotional space to talk whilst we look together at strategies to support the changes they are adjusting to and to develop their resilience.
We explore developing self-compassion; this could be small and practical ways that focus upon wellbeing, perhaps as simple as taking a few moments to relax, or a breathing exercise. Everyone needs something to look forward to but carers will often say to me ‘I have no time; it’s impossible’. For a carer, promising themselves a cup of their favourite coffee, perhaps the opportunity to watch a good TV show or read something they enjoy – and find a way to do this – is so valuable for their wellbeing.
‘I realise I’m not the only one and don’t feel isolated’ Carer
In it together
Our Living Well with Brain Injury groups are another tool we offer carers. These give family members and friends a safe space to express emotion, acknowledge feelings, or question thoughts and beliefs. If you are newly impacted by an acquired brain injury, you will benefit from hearing from families with more lived experience and all that this has taught them. Feedback has been very positive on the importance of sharing experiences and the opportunity to build new social networks.
‘I am now more understanding regarding fatigue, emotions and the thought processes for my partner’ Carer
How does your role fit with the other disciplines available at Icanho?
A person with a significant acquired brain injury will often have various and complex rehabilitation needs. I am fortunate that Icanho has a multi-disciplinary team of physios, occupational therapists, speech and language therapists, psychologists and rehab assistants. We work closely together and are able to be responsive to the changing needs of the person with a brain injury and their carers.
What happens after Icanho?
After someone has completed their rehabilitation with us, they may need support returning to activities and hobbies they previously enjoyed or they may wish to try out new skills. We work with social prescribers and support carers to access community groups and activities.
It’s vital for carers to have the support they feel they need to sustain their carer role and we share information with them around longer-term carer support agencies and carer breaks.
Icanho has a thriving service user group and a newly-formed ‘Friends of Icanho’ group which clients and carers are invited to join if they wish to, after the family member has been discharged from the Icanho service.
What about other family members affected by their loved one’s brain injury?
When a parent has sustained an acquired brain injury, the family’s children and young people are often keen to gain an understanding of what has happened to their parent and how they themselves can be supported through so much change.
Over the past 12 years, Icanho has developed and delivered psycho-education groups for children and young people. The aim is to provide information about brain injury, tailored for their age and understanding. We seek to create a safe and welcoming space for the young people to share their experiences and struggles, with opportunities for listening to others about the impact upon them of a family member with a brain injury.
The young people are encouraged to share what has changed within their families and themselves, as well as share what they are finding difficult now. We enable them to explore and develop their own emotional first aid toolkit for support and empowerment.
How do you feel about your work?
Listening to carers’ stories of how they are coping and adjusting is humbling. I am also humbled by how families carry on with their lives where there is uncertainty whilst remaining hopeful that they will continue adjusting to the ongoing impacts of the brain injury.
I have learnt how important it is for carers to have their own voice, to describe what is happening for them and to feel they have been heard. Having a safe, confidential space without judgement is something that family members value, to explore their feelings and emotions. I have experienced many times the process where what first appears as an ending transforms into a new beginning for a family – something that is different but nevertheless a positive way forward for their lives.
Open Day, Friday 24 May: find out more about Livability Icanho at our Open Day for agencies and community groups and hear firsthand from carers and clients about their Icanho experience.
Contact enquiries.icanho@livability.org.uk or tel 01449 774161 | website: www.icanho.org.uk | Facebook: LivabilityIcanho