Our stories
Thank you @Anastasia for taking initiative an posting here. It means a lot.
You are both always welcome.
There are many diagnoses in my family, but part of the problem is the trauma involved in those diagnoses has not been adequately managed. My son's current therpaist is trying, but becasue of the FAILURE of many others to do their job ... it is still spiralling out of control... it is a case of a stitch in time saves nine ....
Hearing you about the cluelessness of many of the Carer's services.
"
Carers organisation does not seem to be equipped to do this..
They just lump us into groups and expect us to muddle through supporting each other when all at worn out stage.
friendships formed."
and
"I was talking to Carers about this very subject this morning...
I have been referred to Skylight not sure what will come of that..
am sick of workshops
online courses.."
I totally get this.
Your son is very high maintenance. Draining and The issues around birthdays plkay out in my family's situation. Also the one high functioning and the other at odds with the system. So Something is going on ....IMO It is about the lack of family focus in society and the presumptions of a kind of managerese ... that presumes more capability than they deliver. Which is devastating when you are a loved one.
I wont tell the story of last night. It is too hard, and folds into my trauma memories of both my father, brother and ex husband. Yes. People often forget that it is usually the women who are taking their male loved ones to the hospital. These days to be met with a concrete wall of inhuman and inadequate "protocol".
I have had a bit of 'carer' support but it has been way out of whack with what could be honestly helpful. It has not given me much but an ear, with nothing to say, but she is decent and not arrogant, patronising, detached or complacent like many in the profession.
I first contacted a carer group in the late 1980s, as I was a spousal and sibling carer at the time, and they were all mothers, it was not a good fit. It was in experimental times, so others may have benfitted as they slowly have begun sibling support groups etc ...
About 10 years ago I thought I would try agaiin and approached another carer's group for my son, but was triggered by a dominant Dutch lady. There was no point me being there or sharing, she knew everything from her point of view, so I did not and never returned.
A problem with the services is that they do not have proper feedback, and have a culture that is so seriously disconnected from reality and compassion. I came on line here and became a keyboard warrior for Mental Health in my own unique way.
Neither of us have had proper sleep atm. It is what it is. If his leg does not really need hospital attention that is good. I will manage it.
Love Apple
Been in garden and did 5 laps of my street on my new/old bicycle. Reorganised a social commitment here for this week, as I do not trust the situation to be good for frail elderly that were coming.
My heart is in my mouth. I am exhausted. Tried taking him to an ED for a physical injury but mental health mania was too out of whack. It is in the lap of the gods. Nothing else I can do.
