Orpheus travelled into the Underworld to rescue Eurydice.
Our experience of PSP has been that all along. Protecting Liz from various mythical creatures to ensure her well being. The one eyed CCG, the overcautious nurse reporting bruises caused by falling after impulsive unatended attempts to walk, working with Care Agencies to loose poor carers and to make it work well for her as they faced staff shortages and resource issues. And, so it goes on.
Liz is now in a Nursing Home. She became too difficult to keep her at home. Her last two deteriorations', one quickly following on from the other had all but deprived her of intelligible speech and significant cognitive ability. Her regular passive aggression, interspersed with her old self expressing deep love and gratitude, became too much to cope with.
A week ago on Saturday it all broke down and we had to get her into a nursing home.
She is heart broken. So am I.
We have agreed to dissolve as many assets as we can to get her into a better home. Hence the reference to the Underworld, the dreadful place she is in now.
They have triggered a Deprivation of Liberty under the Care Act. She asked for bed bars to stop her falling out of bed. They decided that she did not have capacity to make that decision. They did not talk to me and they triggered a major legal process to remove her liberty. She asked for them to stop her rolling out of bed, which has done in the past. They are frightened of being accused of illegal restraint. The thing is that the power to make those decisions on her behalf will most likely be given to me and Liz has utter faith in me doing what she wants anyway. Why on earth did they not speak to me?
Though this changes nothing in terms of her care it has the potential for taking away her freedom to choose whilst she still can. Another loss for her to face.
What is going on?
Yet again we have an agency pressing the red button on a major legal process in order not to be exposed to litigation and or prosecution for doing what is necessary to, "keep their patient safe." In a proper legal manner. Risk Averse Syndrome.
I am so angry. On top of all the other losses she has endured she will have to face that of knowing she cannot make decisions about her choices whenever the Nursing home doubt them. She will have to face, "We need to speak to Kevin first." How damnably undermining of the last vestiges of her self esteem!
Meanwhile that same Nursing Home is working with us to get her transferred to somewhere more suitable.
The world is mad, so yet again I am fighting to preserve what is best for her against those professing to help.
I am fortunate to have been trained in Deprivation of Liberty under the Care Act and so that is not a worry... It will fall under first examination. Their application is deeply flawed.
My rant? Caring is hard enough. Loosing Liz piece by piece is gruelling. On top of that I must navigate the Styx?
We are both heart broken she is not at home, but care here is untenable.
I hope to get her moved tomorrow or on Wednesday.
I never knew that care meant fighting this hard. I will not give in.