In 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,rollingxylophone!Youso relievethe 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 gloryofyourwarring,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