The view is stunning. Golden fields of swaying grasses with the Grafton hills framing the horizon. âHelen loved to sit in hereâ he says. âLet's do it here thenâ I say.
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I’d come from the hospital setting. Working here made me better at working with families. It helped me learn how good the process can be. How manageable it can be. The experience here allowed me to do a better job working with those daughters who looked after their father at home. >3DOOLDWLYHFDUHQXUVHIRFXVJURXSPHPEHU@ $Q DOWHUQDWLYH QDUUDWLYH LV WR VHH FDULQJ IRU D SHUVRQ ZKR LV G\LQJ DW KRPH DV QRUPDO DQG QDWXUDO DV LQGHHG LW XVHG WR EH ,Q WKLV QDUUDWLYH WKH KHDOWKFDUH ZH SURYLGHEHFRPHVSHUVRQDQGFRPPXQLW\FHQWULF,WLVDOODTXHVWLRQRIZKDWSRLQWRI YLHZZHEHJLQIURPZKRVHQDUUDWLYHVZHSULYLOHJH /($51,1*72%(3$572)$1$/7(51$7,9(1$55$7,9(
Nobody taught me what to do and how to cope. My life had not prepared me for this. I had to learn about the system – to negotiate the care I needed to get for her.vi Always – I didn’t know what I didn’t know. Battles, searching for obscure information, making sense of frustrating and often contradictory rules, procedures and information. In many ways this system talk became the backdrop.
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In the foreground were other ways of understanding and being. Much of it realised through experience. The way I learned to be nurse, doctor as well as daughter at home, late at night. Should I call the ambulance? Or will this be just another long wait to answer the same old questions then more traumatic tests and terrifying separations with distant strangers. I learned to make choices for her I learned, painfully, to survive if these choices were mistakes. This was a soul-saving piece of advice from a human-skilled specialist: “learn to forgive yourself if you can’t always cope serenely and if you make mistakes”. Another player on our foreground stage was a palliative care nurse who visited our home. She gave my mother permission to go … and she helped me find the words to say “you can go now Mum – go to Dad and give him a hug from all of us.” I’m sure, I’m sure I saw her smile as she slipped away.
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