By Cliodhna Leeson
We are taught from day one in social work the importance of resilience – how this informs our practice and how we can empower others to overcome their challenges. Our own resilience as social workers is a reservoir of strength that we draw on to help others who use our services. We are taught that our focus in social work is supporting those in need – focusing on the service user. However, there is increasingly a need to support those who care for the most vulnerable in our society – carers. To put this into perspective , there are now over 200,000 people in Northern Ireland in some form of caring role (Thompson 2018), whilst on a wider level it has been noted that 80% of all care within the European Union is provided by family and friends (Euro Carers, 2018).
Before deciding to start my own personal journey in social work, I worked for several years in various care worker roles from residential settings with elderly people to work with children and young people who have disabilities in the community. As I developed my own skills and knowledge, I began to understand the impact that a daily caring role had on the lives of carers. During this period I began working closely with individual children and their families providing short breaks and I met the Bradley family. Meabh is eighteen years old, has cerebral palsy and is non-verbal. She has an older brother and sister. She requires full time care with all aspects of her life. Her parents Marian and Vincent are her full time carers who have dedicated their lives to providing Meabh with lots of experiences and opportunities to develop her potential and she has turned out to be a lively mischievous teenager who loves music, school and talking about boys!
Marian has many roles – she is a mother, teacher, friend, wife, and a carer. I think she is one of the most resilient people that I have ever met. Meabh has spent a lot of time in and out of hospital with Marian at her bedside. She has needed long periods of recuperation and ongoing physical therapy. Marian and I have had many discussions on how this role has impacted on her and her family’s life. On Wednesday evenings I am welcomed into her home with a smile and a cup of tea to give them a short break and even on their most difficult days, Marian’s warmth and kindness shines through.
The official definition of a carer according to the Regulation and Quality Improvement Authority is a person who provides support for an individual who may not be able to manage without appropriate help. I decided to ask Marian to share her own thoughts and experience as a carer and what it means in practice for her to be a carer.
1. What does being a carer mean to you?
Marian said that the minute you become a carer, you are thinking about that person all the time. Their needs come first all the time. There are no days off from caring, no holidays or giving up when it gets tough as it is a life-long commitment. Marian reflected that she herself did not know what it meant to be a carer until it happened to her. It was a life changing event when Meabh was born which impacted on every single family member. She was grieving for the part of her life that had changed but also getting herself ready to understand how she and her family would cope with the new challenge in their lives.
2. What are the challenges you face as a carer?
Marian said that she had to give up her old life – her job, her hope and dreams of a career and the life that she had previously built. It was difficult to let her career as a lecturer go as it was such an integral part of her identity. It was difficult not to having free time for herself and not being able to her other children as much time as Meabh needed. Sometimes her other children missed out on activities and they took up roles as young carers as they got older. Marian worries about how Meabh views her disability in terms of her understanding of the limitations that it has put on her young life. It can be difficult watching other children achieve in sports, education or employment when she knows that Meabh is unable to grasp these opportunities. However, Marian has dreams for Meabh, wanting her to achieve as much as she can in life and to become independent. She is disappointed about what is being offered in adults services and the thought of going ‘into the unknown’ without a structure or plans for Meabh fills her with anxiety. In the longer term, there is the worry of what the future holds for Meabh, who will care for her and what other challenges lie ahead in terms of her health and how she will be looked after.
3. What empowers you as a carer?
Empowerment for Marian is having so much love for this person – the whole family are committed to caring for Meabh even though it comes with challenges. Their lives have completely changed. It is a different life but it is still important to have dreams and plans, especially for Meabh’s siblings. They want her to experience and learn as much as she can. In practice, this means advocating for Meabh’s voice to be heard and, in the process, the voices of other children and their families. Marian thinks that advocacy for children like Meabh is also a big part of the role of a social worker and should be part of their principles, vales and culture.
Marian said that short breaks for her and her husband Vincent time to spend together is important in terms of self care. Respite services also gives Meabh opportunities to spend time with her peers others and form friendships which enrich her emotional health and well being. It is important that she is involved in activities independent of her family so that she can experience peer friendships just like other teenagers.
4. What does the term resilience mean to you?
Resilience for Marian is getting up every morning to look after Meabh with her complex needs ready to face the day. Over the past year there have been additional challenges with Covid-19 such as closure of schools and respite services. It has been physically and emotionally exhausting but Marian is adamant that you do not give up. Her family has total love for this special child who has a right to be listened to and heard in terms of the choices and control that she has over the care that she receives and the choices that she is able to make about her life.
5. What is your message for student social workers going into practice?
“Get involved with the families – understand what it is like for the families and their children. You must imagine that one of these children or family members is someone you care about and love. Imagine it is your mother, father, sister, brother, grandparent or a friend. Envision all the care and support that you would want for them. Ask questions, raise expectations and challenge the system if you think something is not right.”
Marian ended by asking social workers not to become complacent in their role. Becoming complacent would disregard progress that many have fought for. Old ways of doing things need to be challenged and the focus has to be on bringing in new ways of working with families like the Bradleys who are the experts in Meabh’s life through their advocacy, resilience and commitment to give her the best life that she can have. As a student social worker I do recognise that while we may not be able to change everything, we can still make a difference by listening, learning and working alongside people like Marian and her beautiful daughter Meabh.
References
Department of Health (2020) Quarterly Carers’ Statistics for Northern Ireland April to June 2020, Available at: https://www.health-ni.gov.uk/publications/quarterly-carers-statistics-northern-ireland-april-june-2020
Thompson, J (2018) Supporting Carers in Northern Ireland: Where are we with legislation and policy?, Available at: https://www.assemblyresearchmatters.org/2018/07/24/supporting-carers-in-northern-ireland/
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