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28 Nov 2017 07:47 PM
28 Nov 2017 07:47 PM
28 Nov 2017 07:47 PM
28 Nov 2017 07:47 PM
That delayed grief and delayed trauma is unfortunately common @Former-Member - the literature we have reviewed for the study lists all of the impacts that caring can have - socially, emotionally, physically, financially. Your reflections were similar to some of the other stories like the one @Ann6 shared about a sense of hopelessness. Can I ask, is your hope for your daughter and the hope for yourself in learning how to live with this the same - or is the hope experience different?
28 Nov 2017 07:48 PM
28 Nov 2017 07:48 PM
Even with permission and being responsible person @Former-Member communication by the treating team was very poor, assuming the patient is in a public hospital there are obligations to the carer. I was not given appropriate information along the way.
As part of a complaint I lodged, I have received an apology from the hospital about the lack of communication.
28 Nov 2017 07:50 PM
28 Nov 2017 07:50 PM
@Ann6 hope can be a very complex emotion. I did a whole PhD on the topic of hope and I must admit many of the people I interviewed said that they felt hope was pain. That the 'hope hangover' they experienced when hope was elevated made them crash even further when trauma occured. Has counselling helped, if its OK to ask. In terms of helping you manage the 'what ifs' alongside the 'what do I need to do now'.
28 Nov 2017 07:51 PM
28 Nov 2017 07:51 PM
I found it hard , 60kms away from home , My husband only wanted me there , soo none of the family came up to support, felt totally alone in a red cross unit visiting my husband every day , I love him and I would do it again
my experiences with mental health professionals , @Former-Member, @UNE they talked to me about everything But my husband would not follow their advice of taking time off, cutting back on things
also he chancelled all help once coming home
28 Nov 2017 07:52 PM
28 Nov 2017 07:52 PM
Drop by later when you can @Determined. I'll keep the thread open until tomorrow.
28 Nov 2017 07:53 PM - edited 28 Nov 2017 07:54 PM
28 Nov 2017 07:53 PM - edited 28 Nov 2017 07:54 PM
@UNE - hope was one of the things that kept me going. There were times I did feel helpless but I held onto hope. That hope has deepened now mainly because my daughter has just recently (within the last month), turned a corner and has improved. So hope was not in vain and as a result has been strengthened
28 Nov 2017 07:55 PM
28 Nov 2017 07:55 PM
Very true @Former-Member. I hope your complaint created some improvements in the hospital processes.
28 Nov 2017 07:56 PM - edited 28 Nov 2017 07:59 PM
28 Nov 2017 07:56 PM - edited 28 Nov 2017 07:59 PM
Lovely reflections @Former-Member hope has the capacity to wane and strenghten. I think recognising when hope returns, that it is possible, can help when it might vanish at other times.
Good to hear she has turned a corner.
28 Nov 2017 07:58 PM
28 Nov 2017 07:58 PM
Its good to have complaints acknowledged @Former-Member what we are hoping to do with our study is understand what systems need to be in place for carers of people who attempt, even when those attempts happen more than once. its important to speak up when care is delivered in an appropriate way - its also important to link the stories together like all of the ones shared here tonight.
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