Standing Up by Kathleen Jordan

Author:Kathleen Jordan
Language: eng
Format: epub
Publisher: Impact Press

Paying the price — the cost of advocacy

We really got the sense over that two years that we were

‘the difficult’ family. I remember saying to a family member

at one stage, I feel like we are in One Flew Over the Cuckoo’s

Nest – not in 2012 Melbourne!

Lucinda 2014

There is a price to be paid for everything, even acts of kindness. My family paid with exhaustion, stress, guilt and illness. It seems so unfair that I have cost them this while they stepped in to save me so many times.

I cannot help but worry that Lucinda’s illness, arriving just as I turned the corner towards independence, had its origins in the stress of that time. For close to two years she worried about me, about how I could be best cared for, as well as bearing the burden of daily oversight and being involved in many, often difficult, advocacy meetings. How could I not wonder? Christine Durham’s son was diagnosed with diabetes after her car accident and she also questioned the role of stress in his condition.

Petrina, who tends to deal with the upsets and tragedies of her life in the way of medical people, by being calm and doing what needs doing, recalls that sometimes she and my other sisters would just look at each other and ask, ‘Are we in a nightmare?’ When I went into the stroke ward, Petrina came down with shingles, that classic opportunist illness in times of stress. As she says, ‘I’m sure it was my body saying this is not OK. We were in a nightmare and it was responding to the stress.’

Another sister describes the slow, wearing effects of the ‘driving, the hours at the hospital, taking our parents to visit, lack of sleep due to anxiety about Kathleen.’ It all began to take its toll. Survival guilt crept in and she wondered how she could carry on with her own life and enjoy herself. ‘A wise friend pointed out that I had no choice but to lead my own life and to let go of some control, that Kathleen would be well looked after. However, it would be a long time before I could stop thinking constantly about her.’

My family found the change between the early days and the slow stages of recovery was another part of the journey they needed to adapt to. ‘In the early stages it was keep doing, get on with it, fight, support, all high energy stuff. But one of the hardest stages for me was when Kathleen plateaued out during long term rehab. There was tremendous guilt that we could walk away, leaving her there — all we could do was support her, take her out and do things but at the end, it was back to the unit. It was hideous leaving her there.’

The constant meetings with medical staff had been a massive source of stress, coping with conflicting information, pushing for the best, living with the feeling that they were ‘the difficult family.’ Inside the family, there wasn’t always agreement on how to go forward.

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