When I think back, I will remember four things about last week.
The incredible generosity of a person who passed on an electric wheelchair to Pádraig and sold an absolutely brilliant car to us at a ‘friendship’-price, a car we will use as a back up and for An Saol. The wheelchair will need to be adapted a bit, but once it is, we will go for driving lessons with Pádraig, most likely on a huge, empty car park on a weekend:)
The day a carer did not show up and the agency did not know where they were when I contacted it as I was concerned something might have happened to them – I had expected to be contacted otherwise. It took a day to find out that the carer had been re-scheduled to look after another client and would no longer be available to Pádraig on that particular day of the week. It’s like reverse engineering: doing stuff the other way around as they should really be done. Amazing. And, in my (very subjective) opinion, against all guidelines, best practice, ethical conventions and legal agreements in place. Our world is fragile enough as it is. We really can do without the uncertainty about whether carers turns up or not.
The anger about the continuous neglect of persons affected by very severe acquired brain injury in acute hospitals and nursing home. We know that people should not suffer and do not need to suffer further injuries while in care. Injuries like dislocations or pressure sores of any kind are man-made. Why are they tolerated?
A meeting today with a person who will help us organise a register of persons affected and their families, to develop better rehab services, and a peer support and policy group. Imagine: a one-stop shop for information coming from the people who have gone through or are going through the same problems you are going through. Never be left alone and feel abandoned by a system that is still telling clients and their families that helping them would be a waste of valuable resources. Imagine, if we created, together, an alternative? A system, where looking after the most vulnerable in our society is not a ‘waste of precious resources’ but a moral and ethical obligation, a delivery of their human rights, and – more – an absolute pleasure, involving huge efforts and humongous returns. Returns of the kind the people telling us to ‘face the facts’ will sadly never receive.