Carer Digital Stories

The following digital stories were created several years ago to support a focus on personal outcomes, but the core messages still resonate today.The stories are not necessarily representative. Rather they share just a few experiences that may help to illustrate the sorts of issues that carers may face, the importance of all communication with carers and the meaning and value of taking an outcomes approach.

Service Management and Design
June’s story is a useful introduction, pulling together different aspects of a personal outcomes approach including a shared sense of purpose, worling in partnership, making better use of wider community resources and using the information gathered through outcomes focussed conversations to design and provide forms of support that are Fit for the Future.

The Challenges of Caring
The following stories illustrate some of the issues and challenges that carers can face in everyday life.

Beatrice is a devoted mother of two children, the youngest of whom has a life limiting degenerative condition. Respite recounts Beatrice’s quest to obtain respite care at a time when her daughter’s sleep disorder had left the entire family exhausted. She also describes its coincidence with her own personal, and at times much harder battle, to accept that seeking outside help was not an admission of failure as a mother. The story underscores the importance of trust and continuity of care.

Maureen is married to James who was diagnosed with vascular dementia at a time when they still had four children living at home. Maureen describes the ripple effects of James’ condition on the family, particularly on her two youngest children who developed their own health problems. She describes the importance of James having access to age-appropriate and reliable respite and how its withdrawal was Taking its Toll on her own health.

Val’s story highlights the stigma that can be experienced when caring for someone living with alchoholism. Val recounts how comments from frends, neighbours and care professionals have left her feeling hurt and foolish and at times rendered her invisible.It is a story of trying to carry on in a caring role when there is No Happy Ending.

Communication and Recognition
Expanding on Val’s account of the impact of the words of others for identity and sel-esteem, Loraine and Beatrice’s stories further illustrate the importance of communication and recognition.

Loraine describes the cumulative effects of living with her mum’s bipolar condition over a lifetime. She recounts one particular recent experience which uncovers some of the tensions resulting from her mother’s decision to appoint Loraine as her named person when it is Loraine’s dad who is responsible for all ongoing care at home, and the difficulties that can arise when her dad is not kept In the Loop.

Beatrice illustrates the impact of dismissive communication with care professionlas and concludes with a short plea for acknowledgement of and respect for carers.

Carer’s assessment and outcomes focused approaches
Christeen, Nicola and Tony’s stories all reveal that good quality engagement with carers can prove life changing.they highlight the value of skilled questioning, careful listening and underscore the importance of the care assessment documentation.

Christeen’s story describes how thoughtful conversation with a professional during a carer’s assessment enabled her to see her life in Black and White, to recognise that she had locked herself into a role that was affecting her health, and to allow others including her family to help her.

When Nicola, a physiotherapist, learns that she’ll be expected to carry out carers’ assessments, she initially feels daunted. When she conducted her first assessment, the carer’s relief at being listened to and the changes that ensued convinced her that it was a valuable Part of the Job.

Tony, a social worker, initially questioned the need to conduct a carer’s assessment. The Turning Point came when he carried out a carer’s review when working with one family. Tony describes the capacity of the assessment to provide a record of how things were at a specific point in time that the carer can later reflect upon. In this case it resulted in the carer realising that she was no longer coping and was in danger of losing her identity.