Add Anecdotes

PAM (AUSTRALIA)

[Writing experiment]

Karl and Meg's Story

Karl told me about their life with two adult sons, both in their 40s now, who need full support around the clock for all their day-to-day living activities.

"We don't get to retire", Karl told me. "All our friends have grandkids; they're going on cruises, they're meeting up for coffee or taking up bowls or painting. We're doing the same thing we've done for the last 40 years, and we can't see an end to it. We're really frightened. What will happen to our kids when we die? We looked for places they could go, but we were told there was nowhere that could take both of them. They'd be split up and probably not see each other again. They've shared a bedroom their whole lives.

We built a house for them to live in together, but the government said it would have to be approved or they wouldn't let support staff work there. We don't have ay money left to pay for staff for the rest of our boys' lives. And we're just tired. Our bodies hurt all the time. We're in our 70s, and the boys are too heavy to move around. We don't have the OH&S rules the paid people have - we just get on with it."

Karl's story shows two aspects of "life cycles" that don't fit the way lives are expected to go. In our society, which focuses on the needs of individual people, they are in a scary situation. Karl and Meg can't look forward to a "normal" experience of ageing, just as their boys can't look forward to growing independent and having another generation to care for them.

Meanwhile, formal systems of aged care are barely able to accommodate ageing couples, let alone multigenerational families. And is "aged care" really the ideal to meet the needs of families like Karl and Meg and their adult sons? How can they find a happy, fulfilling, "ordinary" life? That's the message I heard from so many parents of children from two years to 42 years of age:" We just want to be normal". The systems we have now ensure that, even with the best support available, these families are not "normal".