I opened the April / May edition of my Carers NSW newsletter and read my own story! I have reproduced the featured article for carers who are not yet members receiving the newsletter or who live outside NSW, Australia.
A Carer Story…
I became an everyday carer when my 22 year old daughter, Emily, had a skiing accident which rendered her quadriplegic. Emily fell whilst on holiday in America so was over 30 hours away. As I flew to be by her side and initiate her repatriation I began to realise the implications of her permanent paralysis and the lifestyle changes she’d have to master as a lifelong wheelchair user.
Whilst Emily was resident in the intensive care units of Vermont and then The Royal North Shore Hospital, and for the months in Royal Rehab, Ryde, my excess mental energy required channeling so I did what felt most soothing; I wrote a diary.
When I found time to re-read my journal I was struck by the volume of pertinent information held so painfully but tangibly in its pages. I read my seemingly light-hearted notes that revealed resilience, resolve and a surprising humour in my darkest hours. I read the advice that I took from other carers and saw how I developed that wisdom into my own schedule. I read the recipes that worked for me; a struggling, time poor carer travelling to and from the bedside. As I read I realised others might find comfort and supportive insights in my writing, just as I had craved when Emily’s trauma was acute.
The combination of my nurses training and my compelling desire to document and share led to the birth of my blog. I named it “EverydayCaring”. My first blog was published on 7th November 2013. I tell our story of progress and rehabilitation, revealing my insights into the journey we had to experience to recover.
I recorded in my diary our day by day reality which allowed me to reflect upon Emily’s progress and I can read my own post traumatic and adversarial growth. As I documented our management of the practicalities I also had the opportunity to share that normalcy returned to the family. I acknowledge each stepping stone trodden towards Emily’s return home; her return to our community and her reintegration into society as a wheelchair user. Without my journal I would have forgotten the key dynamics I penned in subjective moments and our critical learning path:
• Caring and coping are nurtured by knowledge and understanding.
• Everyone needs personal time and rest.
• Priorities fluctuate daily so families have to share and compromise together.
• Everyone has different ways of coping; it’s personal but we can learn strategies to help.
• Let friends and family help, give people a task if they ask.
I have over 30 years of experience as a registered nurse but no-one can be prepared for their child’s catastrophic spinal cord injury (SCI) Suddenly I was an everyday carer within the family home. I draw from my professional background to meet some of the practical demands of care giving in a domestic household:
1. Being spontaneous is fun but routine has been paramount to Emily’s healthy lifestyle and my ability to remain physically supportive. I accept there will be issues so I aim to be astute; implement care routines with early professional interventions so health can be restored quickly and maintained easily.
2. For me it is important to have identified goals; short and long term. Emily participates in goal setting as the process encourages positive, flexible and mutually agreed aims for a day, week, month or year. Agreed goals allow us to formulate a plan and implement a course of action.
3. We re-evaluate goals as we endeavour to remain realistic.
4. Promoting and facilitating Emily’s independence encourages a healthy future; mentally, socially and physically. I aspire to be a redundant carer!
5. Caring is only sustainable with resources, knowledge, experience and health; I have to prioritize my own health to have longevity as an everyday carer.
Life doesn’t stop when spinal cord injury strikes; the devastation is difficult to share because it is borne so individually and personally. I hope that my honesty and my openness will help others realise that we all suffer and struggle through family tragedy but when we are resolved to manage then manage we do.
Since Emily’s traumatic injury I have learnt the meaning of words such as: love, friendship and giving. I realise the importance of fostering hope and empathy. I have found worth in care giving in my own home to a cherished daughter and I passionately advocate for the differently-abled by writing and sharing. In my blog I endeavour to disclose something that seems impossible to reveal, a family event that could remain reclusive and private. I hope that by telling my truth; that love shines through every dark tunnel; I can help other carers navigate through their darkness. I do not presume to understand or have any more than my own story to tell but we have come through.
Carers NSW is the voice of all carers in NSW. Their vision is for family members and friends who provide care across the state to enjoy improved health, wellbeing and recognition by government and communities. For more information about Carers NSW call 1800 242 636 or