One night in the life of a carer

Our daughter is only a couple of inches shorter than me and I’m around 6’ in the old money.  At her sickest, she weighed around 37kg.

 Our daughter experienced onset of bipolar disorder and bulimia nervosa when she was around 16.  We went through a period of denial, cleaning up vomit and discarded food stuffs along the way, until it became obvious that there was a problem.

 One night, the boys were out at in the BBQ area drinking and smoking and she didn’t want to go out the back, but she wanted a smoke.  She asked for a cigarette and went past to sit on the front step.  Through her shirt, from the base of her skull to the top of her pelvis, I could see every single vertebra, like a string of beads.  I cried until falling asleep that night.  Another time she was allowed the special treat of Vodka Cruisers.  Having been given one, she went through the remainder of the six-pack in short order and then began vomiting copiously.  Then she collapsed on the concrete.

 At this stage we kept chickens and I would regularly carry 40kg sacks of feed out to the shed down the back of the yard.  I’m not sure what our daughter weighed at this stage but when I picked her up to carry her in to the bedroom, it was like carrying bones wrapped in clothing.

 Looking back, one of the biggest problems for us was that our daughter, when she was ill, was at the cusp between adolescence and adulthood.  She was a little too old for youth or children’s services (although she was assessed at one point by a paediatrician) and a little too young for adult services.  If you then factor in that we lived in a regional area and that the available local services were stretched to their limits, you can see that it is unlikely that we would have been able to access appropriate supports.

 Commonly services are designed to service a strictly-defined clientele.  This is understandable in terms of their tender agreements, but it means that if you happen to cross categories ordinarily you are out of luck.  One of the major tasks for the future is the re-engineering of services to be more responsive to individual strengths and needs of the consumer.  There needs to be more flexibility in terms of access to modules of care which produce outcomes that are desired by the consumer, with input and collaboration from carers.

 As a parting thought – I am not enthralled with the term “carer” to describe the role that family and friends play in supporting a person with a mental illness, especially when it comes preceded by the adjective “informal”.  Consumers and carers should not be viewed lesser partners in the provision of care, because they are experts by lived experience.  But this particular can of worms is a blog entry of its own.