Over the last 24 hours there has been a collective online gasp of horror and disgust at last nights 'Panorama' on BBC1 uncovering the abuse by a gang of carers in a hospital for adults with learning difficulties.
I have avoided watching any of the footage as I know full well it will distress me. Not just because I have a human heart, but because I, as an adult with physical disabilities who sadly relies on carers to meet all my physical needs, but because I have also been mistreated by nurses and carers.
I almost feel ashamed to write this. I'm a strong, feisty and independent (of sorts) woman who doesn't take any crap!! How did I let myself become a victim? How did I not assert myself? Let it happen day after day for weeks and then months on end. I managed to assert myself enough to make sure my family and friends didn't do anything to report the people behind the abuse. It's crazy!!!
My carer was called A. She came to me every evening. Yes, she came into my own home, as a guest, paid to do a job, and mistreated me. She was in control though, of what time she came, what I ate, what I drank. The first lesson I learnt was never to upset her. Once I mentioned she left my freezer open, just to be more careful in future, and she sent me to Coventry, slammed doors, shouted in my face. She kept turning up earlier and earlier so I was having my evening meal mid afternoon. I tried to assert myself but I would just get more verbal and emotional backlash.
A lot of the time she was on the phone to her family abroad and ignored me and my needs. She would also talk about me to her family, especially her husband. Her husband would sometimes drive her around if she couldn't be bothered and knew details about me including the code to my key safe. It made me feel incredibly vulnerable.
She also made judgements about me and very personal and offensive comments about my family, particular my dad, who she seemed to have a crush on. I am too mortified to repeat them here.
As the weeks turned into months I lived in fear of A and would be in tears from early afternoon anticipating her call. I felt trapped. If I said anything I knew the response would be abusive and could last for days and weeks. And when you're reliant on someone for the most basic human needs such as hydration and nutrition you are scared to do anything to jeopardise it.
My family knew what was going on but I begged them to do nothing. It sounds pathetic and so unlike the me a lot of you know, but at the time I was completely controlled by her. And even saying and doing nothing, I couldn't get it right, I couldn't please her. Almost all of last summer she refused to speak to me. But she did communicate with angry glares and growls under her breath. On the rare occasion she did need to speak to me to ask a question her tone was full of anger and distaste I was angry at myself for creating a situation that resulted in her having to ask me a question. Which makes no sense at all!!!
I remember on one occasion she turned up so early my cleaner was still here and one second she would be ignoring me, giving me evil glares, and slamming food and drink down in front of me, the next second she was putting on her sweetest voice and making small talk with my cleaner. It was surreal.
In the end, she just didn't bother showing up one night. My parents had to rush round and care for me themselves and my mum just announced that was that and put in a massive complaint against A. She denied everything and the only change was that she is now forbidden from caring for me again. The management said to me that "you can't get on with everyone" and that they think A is more suited to older clients!!
It beggars belief that this sort of thing goes on, let alone that carers can deny charges of abuse and get away so lightly. I've heard of others having to undergo "retraining" to straighten out their ways.
Carers and untrained nurses are now just as much on the frontline as registered nurses. And yet they remain free and without any form of regulation. Carers should be regulated and live to a code of conduct. No one should have to suffer what I went through or those poor patients shown on Panorama last night.
Thanks for listening to my experience.
I watched part of the programme last night and it upset me terribly, as there is a good chance that I will be hugely reliant on people other than family as there is not much of a family. To see what can happen and then to read your dreadful experience, leaves me speechless, and to be honest quite terrified of ending up so dependant on strangers. You were very brave to tell your story and no one should judge your actions, unless they have been in a simiar situation. The nearest I have been was in hospital after major spinal surgery and I was unable to be moved for some time, then slowly learning to walk again etc I had very limited movement in my spine, and any nurses who were unpleasant, I couldn't say anything as I was completely at their mercy, and you didn't know who were their friends etc etc, so I have a tiny understanding of your position. But I knew I was leaving the situation, big difference! I hope your situation is improved now re your carers xxx
ReplyDeleteI understand where you're coming from...in my case, it's family. In fact, over the years, I have come to believe it is much more common than admitted the elderly and/or otherwise health-comprimised individuals, are actually more mistreated than less.
ReplyDeleteI have an appt soon with the appropriate authorities, hoping to escape at least to an extent the ''caregiving'' i have been receiving a little more than two years.
Thank you for sharing OUR stories. WHY do those of us who can speak out tolerate it? Sometimes, it's a psychological factor, or denial, or a combination of all resulting in disbelief. Until it becomes unbearable.
For those of us who are isolated, the only link we can hope for can come in the form of online help and/or an outside source, carefully planned and executed so as not to offend the ''caretakers''.
For me, my only dear friend interceded on my behalf. There is protection in numbers, people. Remember that: the more outsiders in your life, the greater your chances of protection.
Anonymous