The everyday courage of carers

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Hands claspingIn 1999 my 22-year-old daughter Jayne sustained a severe head injury in a motor vehicle accident when travelling home from a university placement in the Adelaide Hills. After nine weeks in coma and four years of intensive rehabilitation, Jayne now contends with the use of only one normally functioning limb amid multiple disabilities. Daily she relies on either her father, her auntie or me (her primary carer) to shape her life.

Most mornings I help Jayne with one hour of physiotherapy which entails walking practice, passive riding on her thera-training bike and a few minutes of functional electrical stimulation to her right arm and leg.

During the day we go out to parklands, the beach or suburban cafes. Often we play crosswords, board games and cards, or we send emails and listen to music. Because severe brain injury impacts on short-term memory and initiating, planning, projecting and problem-solving skills, most activities are prompted for Jayne.

In all areas of Jayne's life I try to ensure her personal agency and inclusion; often feeling as if I am pulling her up onto safe ground.

I've never thought it should be mine or other family members' responsibility to deliver full care over a lifetime. But day in, day out, we do this, because we love Jayne, and because we will not imperil her gains or her happiness by placing her in dismal settings where few can fully appreciate her vulnerabilities, idiosyncrasies and capacities.

One way or another, Jayne's family provides 156 hours of continuous care each week. Just one hour of daily care and five hours of weekly respite is organised through Disability SA. Jayne's father and I yearn to be able to guarantee loving care for Jayne forever but we are growing older: Oscar is 70, I am 64, and my sister in her 60s.

Jayne's long-term care is our deepest concern. Often I think of Jayne's poem about the kookaburra:

Kookaburra chorus

Raucous,


rolling
xylophone!
You
so relieve
the city drone.
In silent wonder,
I adore your chortle ...
... as you pick the sonic bones away,
the wonder of a brand new day uncurls.
You ring the day in truly new!
Bring to our ears,
the glory
of
your
warring,
morning chorus.

And I ache as I wonder, 'How can I die and leave a mind so full of grace and trust behind, disconnected and alone?

Indeed few activities for learning and interaction exist for brain injured young people to go to during the day, let alone loving, homely, high-quality care in the longterm. Often I wonder how any person with severe acquired brain injury manages without family — many of them must roam the streets of our cities pitifully isolated, all but abandoned for the bulk of each day.

In my experience, stretched systems, though worthy, struggle to cope with demands. Here at home, I haven't seen a case-worker face to face for several years. Short staffed and underfunded, agencies struggle to respond to ordinary needs, dealing instead with emergencies or situations of high stress.

Calls to Jayne's personal care agencies too have got lost in the system, requiring persistent attempts to solve even 'simple' concerns like her shower-help remaining in place. Where would Jayne be if I could not advocate for her?

Much is made of the 'contribution' family carers make, and the 'support' they give, said to save the nation billions of dollars annually. But carers give much more than support. They are critical for their loved one's survival and wellbeing. Long-term carers of adult citizens are workers and deserve the same rights and options as others — days off each week, sick leave, annual leave and a fair wage. Nobility does not pay the bills or caring costs.

I feel deep gratitude for all members of my family. I ask myself what happens to carers who are totally on their own — who have no-one nearby or whose family member is mostly depressed, aggressive, unresponsive or unable to communicate at all? I could not care full-time and alone in any one of these circumstances. I would burn out.

Schedule 1 of the Carer Recognition Act 2010 (a guide that outlines obligations for carers that are not legally enforceable) carries statements such as 'All carers should have the same rights, choices and opportunities as other Australians' and 'Support for carers should be timely, responsive, appropriate and accessible.' But how does this actually translate into practice?

Ten years after Jayne's accident I requested a holiday break from the Disability Service Body that funds Jayne's care. I was required to write an extensive and intricate submission and to send numerous emails backwards and forwards to enable me to take leave from Jayne's care. The whole process took several months and I was told that despite the intensive nature of one-on-one care, no-one had ever asked for this before.

I wanted to say, 'And when did you have your last holiday, and was it streamlined, unquestioned and on pay?'

I am astounded by the commitment of all carers everywhere — their loyalty, resourcefulness and ingenuity. Sometimes when my mood flags I go to Jayne's room and, on behalf of all carers and all the people they care for, I read the words of Robert Louis Stevenson hanging in a simple frame on her wall: 'Everyday courage has few witnesses. But yours is no less noble because no drum beats before you and no crowds shout your name.'


Helen Sage headshotHelen Sage grew up on a farm in Victoria and now lives in Adelaide. She began writing after her daughter Jayne's accident. Her first book A Flower Between the Cracks (Affirm Press) draws on those experiences and lays bare the day-to-day realities of the 2.8 million unpaid carers in Australia. 


Topic tags: Helen Sage, carers

 

 

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Beautiful, it brings tears. That poem could be Hopkins.
Frank | 03 April 2013


Thank you Helen. Your writing brings courage to others. I also wonder how those with a disability manage without the love and care of family members.
Anne | 03 April 2013


I know exactly how you feel as I am my wife's carer who has early onset dementia.
Peter Wade | 03 April 2013


"THERE IS NO GREATER LOVE THAN IN THE LAYING DOWN OF ONE'S LIFE FOR THE SAKE OF ANOTHER". One need look no further than into the life of a dedicated carer (no matter for whom he/she might be caring) to find Christ in this world. Loved the poem - the best I have read about our beloved kookaburra.
john frawley | 03 April 2013


"I ask myself what happens to carers who are totally on their own" - frustration at the so-called 'system' of gov disability services who routinely remind us how lucky we are to have 'support systems' yet the outcome is no different from your holiday scenario. Then, resignation. Yes, it's better just to live each day, don't fill in forms - endless forms - and learn to hide the hardships because there is not only a lack of understanding of how disability affects the disabled person & their carer's life, but a growing resentment of supporting those who can't work in those circumstances. Ans sometimes it is like this: 'A blow expected, repeated, falling on a bruise, with no smart or shock of surprise, only a dull sickening sensation and the doubt whether another like it could be borne.' Evelyn Waugh, Brideshead Revisited
Helen | 03 April 2013


Thank you, Ms Sage for so movingly enhancing our understanding of the life of carers. John Frawley is correct re the presence of Christ in carers. Perhaps we who are not carers could spend more energy lobbying for much greater funding for the young disabled and respite care. Even if we cannot do so physically, paying a little more in (hypothecated) tax would enable the burden of service to be shared by we who are more fortunate.
Patricia R | 03 April 2013


Just to say thank you for telling your family's story. Thank you for telling about the depth of your love for Jayne, and the ache it brings.Thank you for the beauty of the poem.
alex nelson | 03 April 2013


Well said, Helen. Disability knows no boundaries but we are fortunate that it fell between the cracks of such an eloquent spokesperson as yourself. We are shouting your name and will look forward to reading your book. All the nameless, silent and invisible carers of this country thank you.
Estelle | 03 April 2013


Dear Helen, Thank you for that moving article. As the carer of my husband and part time carer for my son with Down Syndrome I have some small understanding of what your life must be like. Thank you for speaking up for all those who cannot. As a poet I relished Jayne's poem.
Jean Sietzema-Dickson | 03 April 2013


Peace be with you Helen. My wife and I also care for an autistic, OCD and intellectually impaired child and know that once we die, our child will be vulnerable, abused and exploited.
Frank S | 03 April 2013


Thanks for this article Helen. I have four year old twin grand-daughters, one of them has cerebral palsy. So, my beautiful daughter and her husband are caring for two precious souls. And our entire family has experienced the joy and deep love of these two beautiful little girls. No easy road ahead but we feel blessed.
Pam | 04 April 2013


Thank you Jayne for sharing. I have just started working at Carers S A and would love to connect with you. My email is moira.deslandes@carers-sa.asn.au I have just added a question tothe aannual survey that directly relates to your point about holidays so I was moved by the serendipity of that fact.
Moira Deslandes | 05 April 2013


Helen you put the case for the carer/carers beautifully. I helped my Nana care for my bedridden grandfather in the 50's and I cared for my terminal husband in the 90's. It appears you are a gracious carer. Unfortunately gracious was something I wasn't with my husband. Mostly because I think he was in that situation because initially he would not seek medical help. When he did it was way too late. Now I know what happens to some brain damaged children and their relatives. I think that politicians think by patting the public on their backs for the good jobs they do negates any assistance that might be given to them. I wish you, your family & Jane the best in the future. Such a beautiful mind lost forever.
Kathleen Garraway` | 05 April 2013


Thank you everyone for all your warm and heartfelt comments - they mean so much to me. Writing the book took such a long time - knowing that my thoughts resonate with you and that the story helps and affirms others makes the commitment to its completion all worthwhile. Thank you too for your lovely comments about Jayne's 'Kookaburra Chorus' poem, sharing them with her brought such a beautiful smile!
Helen Sage | 10 April 2013


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