People said it was a good home it wasn’t …
This is not an Essex story but I live in Essex. My elderly Mum lives in Richmond and has dementia. She was in a care home from November 2012 – December 2013. She went in for respite care. She went downhill very quickly. We felt she was left starving. We asked the manager why she was losing weight, he said because it takes such a long time for her to eat. Mum was in other peoples clothes when we visited, the staff seemed to spend no time with her, she wasn’t encouraged to walk so lost mobility, we saw no interaction.
We were questioning what was happening. We saw people with no underclothes, excrement sometimes on the floor not cleared up. The doctor we felt bullied mum and us, regarding medication, when we asked for this to be explained to us and whether some of it was actually necessary. Mum didn’t want it, this should have been her choice.
When cleaning of this home took place on a large scale or something like this we noticed everyone was very quiet. Care workers did not have time to pick up food thrown on the floor, I would do it for other residents. I would see people ask for tea and biscuits and told “you can’t have it”. I would go up to the carers and say “why can they have it?”.
The doctor should have called the family when mum’s medication was changed, they never did. She was constipated all the time and we found out was being given enemas and was terrified, we don’t know what happened behind closed doors. We said “do not give my mum invasive anything against her will and without us knowing”. People screamed in the home and nobody came to them. We knew, luckily about safeguarding (SOVAs) and we took out 2 of them but the doctor said mum’s bruising was just her skin being pinched by something. We felt helpless.
We even instigated information boards on mum’s wall to give information to new carers coming in to care for her so they would know her needs, we were so worried. We were concerned whether this home knew what they were doing concerning dementia care and asked how they were trained. The answer was the staff get 1 hour video training.
Feeling my mum was nearly dead or about to die, we asked a mental health group who had looked after our brother with cerebral palsy to help, they said they were not involved with dementia but agreed to go into the home, paid by us, to care for mum. They home hadn’t a clue about anything and were rude to our carers. Having lost my brother and Dad at this time, we wanted to take mum home. The mental health care management group of carers we had brought in knew, by sheer good luck, about NHS Continuing Healthcare, we went through this process and got it. We know that others do not have that luck to know that this exists.
Carers from the home came up to us and said we were doing the right thing. We got mum home and her quality of life is so improved. She does not need some of the medication. We are convinced she was drugged unnecessarily because her thinking and condition improved so much especially her communication. People said to us this was a good home, but it wasn’t.
Having organised carers at home at first, we then had to get new ones, the first ones weren’t turning up and were neglecting mum. We got new carers and to ensure that they looked after her properly the family have made their own videos on how to look after mum, that is how worried we were, so that they could revisit the videos with the carers whenever they needed to remember mum’s needs and likes and dislikes.
Mum’s dementia makes her shout out loudly and we discovered that properly insulation can even be provided under NHS Continuing Healthcare. Others may not know this. It is lovely to see mum content and now smiling and eating her chocolate biscuits she loves when we visit and able to communicate as she didn’t before. As a family we have been terribly stressed during all this experience and all we want to do is make mum’s end of life reasonable, not spend out time questioning the care.
Living so focussed all the time on what is happening to mum and worried about her all the time took over our life.
Now she has good care and at last we can “breathe”. It shouldn’t be this way.