Finding out about the experience of others who are in a similar position to you can help to build hope, and gain insight into what has helped others to cope with their situations. You can gain this experience by talking to other carers directly, by going to a carers support group, or by joining an online blog or network. You can also read a range of carer narratives online:
‘Voicing Caregiver Experiences – Wellbeing and Recovery Narratives for Caregivers’
A collection of narratives from caregivers both in Sussex and Scotland, as well as including some very useful resources on recovery and wellbeing for carers. This book was a joint publication from the Sussex Partnership NHS Foundation Trust and the Scottish Recovery Network.
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The editors have written a brief summary of each of the caregiver chapters at the beginning of the book, which is helpful if the book is used in a reference or selective way. For example, caregiver readers may wish to read a story that they can relate to most easily or that might be helpful at a particular stage in their own caregiving journey.
| Chapter No | Chapter Title | Details |
| 1 | What does recovery mean to me? | This section contains questions and prompts for readers around what recovery means to them. |
| 2 | Recovery … a strange word for me | A mother’s account of caregiving for a daughter with a psychotic illness – how it was with and without support from services; the emotional difficulties of not being listened to; also that by being involved and made to feel valued, the process of ‘recovering’ can be helpful to caregivers. |
| 3 | The silver lining | An uplifting account of how a husband and wife overcame confusion and stress after their son developed a psychotic illness. How seeking out information and improving understanding helped their relationships with professionals and their own recovery journey. |
| 4 | So you love someone with a mental illness? | Both social and personal recovery started for this wife when she joined Al-Anon (the sister group of Alcoholics Anonymous) after her husband with a bipolar disorder turned to alcohol. The tools she gained helped her support her husband to sobriety and manage her own recovery. |
| 5 | My story… so far | A strong narrative by a mother whose son developed both physical disabilities and psychotic symptoms, in which she explains that her own recovery was helped by taking up voluntary work and becoming a magistrate as well as managing the current reality. |
| 6 | Love is the first ingredient | An interview with an Asian mother of a daughter with mental health problems which the family have found find difficult to talk about. Her own recovery has been helped by joining carers’ groups, and by contributing to training while maintaining a close bond with her daughter and supporting her recovery. |
| 7 | Pause for thought | The editors reflect on the importance of hope and recovery for caregivers aided by the use of scenarios and exercises. |
| 8 | Every pebble counts | The husband of a woman suffering from depression talks about personal pain and hope, and through understanding recovery as regaining what has been lost, he has developed strategies to help maintain wellbeing. |
| 9 | Recovery – or simple acceptance? | An emotional account about the meaninglessness of recovery for a mother, whilst her daughter is not free from a psychotic illness. She outlines in her ‘diary of despair’ her pain at watching her daughter lose everything, but also how poetry and literature have helped her to express and cope with her loss. |
| 10 | I wish I could go back and give myself a hug | How national and international training initiatives around recovery for caregivers have helped this mother better support the recovery of her son after her distress at the poor provision for him. |
| 11 | Hearing the music and remembering to dance | In this chapter the author offers an uplifting narrative about the power a recovery- based approach has to improve caregivers’ lives and service delivery. On the other hand she reflects on the life opportunities she has missed as a caregiver, and calls for real choice in supporting wellbeing. |
| 12 | Recovery together | A detailed account written by a caregiver, who came to the UK from Iran as a young girl, and grew up with a brother who was diagnosed with schizophrenia. She talks about the lack of cultural awareness shown by services and the difficulties faced in this country by her mother. She explains how starting a carers’ group and training as a psychotherapist has helped her own recovery, and ends with ten ‘practical tips to support recovery together’. |
| 13 | Making sense of it all | In the final chapter the editors have drawn out their own learning from the narratives both collectively and individually. It includes the following 4 points – of the many points made about recovery for caregivers: – The importance of ‘care for the self’ in recovery and wellbeing. – The importance of early support and information for caregivers. – The importance of relationships with caregivers. – A sense of shared humanity. |
| References and useful resources | This section includes useful online resources for caregivers. |
With acknowledgement and thanks to the Scottish Recovery Network, for giving us permission to share their material.