I am not often an angry person. But like most people, there are some things that have me in a silent (and sometimes spoken or shouted!) rage!

Things I am raging at at the moment:

The Post Office scandal, primarily how those people (the postmasters and postmistresses) were treated. Unforgivable.

The state of world politics. My friends and I have frequent “ What can we DO about it though?” discussions.

Lately, and after his recent Annual Review, the standard of living for our son, 38, (complex learning disabled with profound autism and little speech. ) I understand the constraints, and why he has to lead his life in a Care Home, but feel desperate about not having any control of how his life is now.

Carers/Support workers are paid a low wage, there are in all 20 of them for the 6 residents, but these vary, and we are often not told when a member of staff leaves. The manager is now part time, (something we did not approve), she is therefore hard to pin down, and communication is definitely not as good as it could be. When we ring, nobody seems to know answers to our questions due to poor handovers. Activities like swimming, which our son loves, are not in place: it’s taken 19 years of us advising, recommending and pushing for this. Why has this never been put in place? He has a Motorbility car that staff drive for him, so transport is not a problem.

We receive no plan of what he has done, or going to be doing. He currently takes around 6 baths a day, is this not a sign of stress and/or boredom? I want to chivvy everyone up, but my husband is afraid of rocking the boat/losing the place.

Our daughter, a trained counsellor is distressed at what she sees as us betraying him and his needs but also unsure how we can improve the situation for our son/her brother long term. Bearing in mind that we will not always be there. We wish to get back to a decent level of care. He is such a vulnerable young man and ought to be treated with the respect and dignity that he deserves. This is NOT an end of life home but his Home for Life. He has normal life expectancy.

I am distressed as I write this but cannot see that there is sufficient understanding of the need to maximise his skills, however low these may be, and to future plan. He deserves better. He is slipping backwards so much that his anger against us manifests itself frequently now when we take him out.

A frustrated and angry mother who awaits your views and comments.

Sally 

A Moodscope member