I have to apologise to anyone expecting an amusing blog, because from now on the subject is not so funny, very difficult to write about, and not so nice to read.
It's about old age, and what might happen to you one day, as it happened in my family, to my father, in this borough, not so long ago. It's about what happens when social care, and in particular the care of the elderly, is farmed out to the private sector, and profit comes before the well being of an individual. And it's a warning to us all of what will happen if, as our local authority, and the new coalition government expand the inclusion of the private sector into so many aspects of our lives.
My father did not 'go gently into that good night'. He raged, raged, against the dying of the light.
In fact, the last two years of his life were simply horrendous, and it's something I will feel guilty about for the rest of my days. I am going to explain why, because I think the story of his slow and undignified demise is a warning as to what can, and probably now will happen, in this borough and elsewhere, in the near future. I'm afraid this isn't going to be a pleasant tale, so skip it if you are squeamish.
My father was much older than my mother. He didn't marry until well into his middle years, and had children at an age when many men were becoming grandfathers. He was an intelligent, hard working man, largely self educated, who worked his way up from office boy to director of an international company, based in the City, at a time when such a position was usually exclusively only in the grasp of priviliged, ex public school boys, a background far distant from his South London, working class roots.
When he retired, in his late sixties, he kept busy and active, still driving down to France every year in his eighties, and keenly following the world of politics and current affairs, accompanied by a daily cover to cover absorption of the Telegraph (which journal was singly responsible for turning his daughter into a enthusiastic socialist, much to his dyed in the wool Tory dismay ...).
When he was 93, however, he began to fail, having a series of falls, possibly as a result of mini strokes, which in turn led to the onset of a form of dementia *. This is a particularly cruel disease, robbing the sufferer of their personality, intellect and memory, and causes enormous distress not only to the individual, but also to their family. With grimly awful timing, our mother then became terminally ill herself. Eventually, due to the increasing immobility and uncharacteristically irrational and aggressive behaviour of our father, and the worsening condition of her own health, she was no longer able to cope with his needs at home, and doctors decided he should be placed in residential nursing care.
Enter Barnet Council, and a social worker responsible for the placement and monitoring of our father's nursing needs. A home was suggested that was within easy access of our mother, and a place was secured there. We were not given any reason to question the standards of care in this home, but were assured that the authority used it for many placements. We were then unaware of any reports that prospective users's families were entitled to read, but it was made clear to us that there were anyway very few places in London which would be willing to take someone with our father's particular needs.
Before he moved to this home, Dad spent time in a local hospital, and at this point was aware enough of his condition to be appalled at what was happening to him. In fact he was suicidal. He fixed me in the eye on one visit and said: 'I'm exhausted now, because I've been running a marathon: but as soon as I can, I intend to make my way to Tower Bridge, and jump off.' After a while, he was then moved down to a terrible ward used to accommodate geriatric patients with dementia and related problems. You cannot imagine the sheer, gut wrenchingly awful state of this place, the lack of compassion, dignity or support shown to such vulnerable elderly patients. It was the first indication of how things were going to be, wherever he went, in fact.
One Sunday, my mother and I arrived to visit and found not only were there no nursing staff present, a patient in Dad's ward was lying sprawled on the bed, naked from the waist down, and completely unattended. We had to go in search of a male orderly who merely shrugged at our concern and obviously didn't see, or care, what the problem was. When he had left the room, my father told us that this man had hit him. Because he was in such a state of confusion, we were not sure whether or not to believe him, although he did seem to have a mark where he said he had been struck. He told the same story to a visiting relative the same day, so we made a complaint and asked for this to be investigated. Nothing much happened, and then Dad was moved to a short stay in a respite home. While he was there, we were phoned and told the staff had accidentally given him someone else's medication. He was then moved to another geriatric ward in a different hospital, which was like something out of 'One Flew Over The Cuckoo's Nest'.
This hospital, demolished just recently, was one where I had spent a terrifying week when I was a four year old girl, having my tonsils out. Parents weren't allowed to stay in with their children then. I remembered, when I walked up to the entrance to visit my father for the first time, how I had once stood in tears at the window and watched my family go home after visiting time, leaving me there all alone. Now the tables were reversed: as I walked away after visiting my father, I would look up at the window of the ward where he was incarcerated and feel terrible anguish and guilt about leaving him there, alone with strangers who didn't give a shit about him, or any of their patients.
All the immobile elderly patients on this ward were left all day either in bed, to stare at the ceiling, or in stationery wheelchairs parked facing blank walls, utterly silent and heavily sedated. Two lazy, bored and unpleasant care assistants spent the day sitting watching the patients' tv, leaving their charges to vegetate. I noticed my father could barely recognise I was there, or hold his head up. He was dribbling, too. Determined questioning revealed that he had been prescribed a new drug, a dementia treatment with a very heavy sedative effect which has now been banned in this country, and his changed condition was caused by the side effects. This sedative had been prescribed instead of the antidepressant we had asked for: why? Because it made life easier for the nursing staff. We demanded that he be taken off this drug, and his condition and quality of life improved. He was then moved to his new and permanent nursing home.
This home was relatively newly built, with a designated ward for what are termed 'EMI' patients: that is to say elderly and mentally infirm. This ward was behind a locked door, with access only to those with an entry code. There were about a dozen or so patients on this ward, A couple of them spent their entire time in bed, where one would scream abuse and obscenties at no one in particular, ignored by all staff and left to make herself hoarse. The other residents were always sat in the small day room, all day, with a tv left on full blast, which they could not follow, and at the same time, a radio in the same room would be left on for the staff's benefit, playing the sort of music any elderly person would detest, at top volume. To me this symbolised the absolute contempt and lack of feeling that the staff and management of this home felt for their charges.
The residents in the day room were left all day, with no activities, no stimulation, no conversation, no interaction, other than the most basic in relation to meals, the distribution of medicines, and some personal care. They were not taken out, even to the patch of grass that passed for a 'garden' outside. Apart from one other woman who used to come and visit her husband, my brother and I were the only regular visitors to the ward, and it was soon made clear that our visits were not welcome.
Many people with advanced dementia do not have regular visitors - sometimes because their relatives feel that they no longer recognise them, but also in some cases an elderly patient has no surviving spouse or close relatives. Either way it means that these patients have no one to monitor their care, and make sure that they are being treated correctly. It also means that the homes can be run with minimal standards and at maxim profit.
The woman who visited her husband was devoted to him, and would sit for hours with him in his room, just holding his hand, to comfort him. He had lost the ability to communicate, but was aware she was there. The other reason she spent so much time there, I soon realised, was because she knew that otherwise his care would be so awful. The things that we saw on our visits were so appalling that one could only speculate what must happen when no one was there to see.
There was one very old woman on the ward, Flo, who was said to be 104. She was a tiny, wasted, wizened figure who sat all day in her night clothes perched on a chair. She would constantly shout: 'How old am I - NOW?' or, 'I am hungry, and I am thirsty, and I want something to eat, and something to drink - NOW!', all day long, never anything else, ignored by everyone. One day, I witnessed one of the brutal male assistants who worked there, pick her up and fling her into another chair, with no care for her fragility. She clung to his arm in fear, and then, to my surprise, began to stroke it in wonder, almost sensually. 'You have such lovely strong arms, and I do thank you' she whispered, almost pleading with him. He looked at her with derision.
We assumed that the others in the day room were silent because they could not communicate. In fact, my brother, who, unlike me, has the patience of a saint, and a kindly disposition, discovered that several of them, if you tried, would respond to a simple conversation. It was just that none of the staff could be bothered.
One Sunday I called in to visit my father. As usual at the weekends, when staffing was even more minimal than usual, the smell of urine from unchanged incontinence pads was chokingly overwhelming. As usual, no staff member was present. Worst still, Flo was sitting unnoticed in a chair, covered in something I will leave to your imagination, and smearing it all over her face and arms. She had evidently been in this filthy state for some time. I ran off to try and find a single staff member. Eventually I found the so called nurse sitting in an office, her head in her hands, sleeping. She was not exactly keen to clean Flo up, looked at her in utter disgust, and if I had not been there, I had no doubt she would have left her until she could find a lower grade assistant to do it.
Unfortunately, there appeared to be not a single person working in this home who spoke English as a first language, other than the manager. This might seem a trivial or possibly racist objection: it's not. The problem is that for elderly people with highly dependent needs, communication is difficult anyway: for people with dementia, being surrounded by people who are unable to speak clearly with them is a disaster. Of course, working as a care assistant with dementia patients, having to deal with their incontinence, their inability to feed or wash themselves, is difficult and at times unpleasant. No doubt it is also poorly paid. But there are plenty of poorly paid jobs to choose from that are less unpleasant. My experience of many people who work in close proximity with patients like these is that some are undoubtedly totally unsuited to the job, and worse still, a few definitely obtain a kick out of treating these vulnerable elderly people very badly.
I truly believe that, just as we are now finding out the horrific extent of the exploitation of children in care, and in the church, by paedophiles, one day we will be forced to acknowledge the extent of abuse which elderly people with dementia are being subjected to, in some so called care homes. Just as children's homes offered opportunties to paedophiles to exploit and abuse children, the care of defenceless elderly people can be exploited by cruel and perverse individuals. The only difference is that children grow up and are able to report their experiences: elderly people with dementia simply die, and when alive are usually unable to communicate to anyone their experience of abuse.
One weekday I decided to visit at lunchtime. There was one care assistant left to feed all the residents who could not help themselves. While I helped my father, I suddenly noticed that the face of the man next to him had turned dark blue, and he appeared to be unable to breathe. I yelled at the assistant, who barely turned round. Eventually she ambled down the hall in search of a more senior employee. Minutes passed until the only nurse present came to the room. By that time I had started to ring for an ambulance myself. The nurse, 'Phyllis', a fairly elderly woman, decided the man was choking, and forced some sort of clearing apparatus down his throat. I thought he was already dead, and anyway had probably had a heart attack or stroke, in which case this procedure was inappropriate, but she carried on. It was only when I asked if he had a pulse, that she checked this. She obviously then decided he was dead. She left the room and and returned with a bed sheet. To my complete horror, even as the ambulance was arriving outside, despite my protests, she and the assistant bundled the dead or dying man onto the sheet and literally bumped and dragged him across the floor, out of the room. I just could not believe what I was watching, that a man's life had ended in such a dreadful, shambolic, undignified way. Then again, he was lucky to escape more years in that hellhole.
Obviously we complained to the management of the home about what had happened, to little avail. As it happened, as I was leaving one day, I noticed some comment forms left by the body which apparently regulated nursing homes.. I took it with me and filled it in, detailing what had happened, and our general experience of the home. Big mistake. An inspector from this body called me one day to ask my opinion of the home. He evidently had issues with the place, rarely recieved any feedback due to the lack of visiting relatives, and was keen to hear about our experiences. So I told him.
By that time we had had formed huge concerns about the treatment of our father. We found out he had had falls which necessitated hospital visits, without us always being informed, or the incidents written up in a report, as required. Worst still, he was kept cooped up in a chair all day, locked in with a wooden tray, like a child in a highchair. When we objected to this we were told that it was necessary to keep him 'restrained'. We asked them to find a more humane way of seating him, being happy to pay the full cost of any alternative seating. They said we would have to apply for this.
The home had tried to sedate him, like the other residents, because they said he was 'noisy'. This meant that he talked. The other doped up residents kept quiet. When you arrived at the home, you would hear Dad before you saw him. He would sit, usually with his eyes shut, talking loudly and continually to an invisible third party. He did not know where he was, but tried to make sense of it. He knew he was in some sort of institution or organisation.Sometimes he thought he was back at work, and would spend the day dictating long messages about grain exports and shipping contracts to invisible secretaries. At other times, he thought he was still in the RAF, during the war, and would respond to any conversation as if he was talking to superior officers, finishing every sentence with 'Sir'. Or he would josh his old pals about girls - and then his language deteriorated dramatically. After a while, realising he was in some sort of enforced captivity, and because many of the assistants on the ward were from French speaking African countries, and he heard them talking to each other, he decided he must be in some sort of French prison camp - like Dreyfus, I imagine, or maybe the French Foreign Legion - and for months only spoke in schoolboy French. When that phase ended, he would talk in long dramatic monologues, declaiming in oddly regular prose, almost in iambic pentameters. Sitting there listening, I felt like Cordelia to his King Lear, and secretly proud of his defiance, even if it was only verbal, and the gesture of a madman.
By this time, my mother was dying in hospital, and my brother and I were going from care home to hospital, trying to make sure each got the care they needed. We probably didn't have the energy to be as forceful with the home as we should have done: they certainly didn't show us any sympathy at this point. My mother died, but we did not dare tell Dad. We had to keep up the pretence that she was still in hospital. If we had told him, he would have been distraught, and then he would have forgotten, and we would have had to keep telling him. So we lied, and pretended she was still in hospital, which was very, very difficult. And after a while he stopped asking about her.
We tried very hard to get the Barnet social worker to do her job and improve our father's care. She was pathetically reluctant to confront the management of this home, terrified of displeasing them and losing the placement of future contracts.
The worst insult, of course, was that, despite being so ill, immobile, incontinent, so dependent, he was paying hundreds of pounds a month for the privilige of being treated so disgustingly in this so called care home. Why? Because he had worked hard all his life, and had a house and a few savings. Some basic needs were paid for but otherwise he had to pay through the nose for the privilge of being treated worse than an animal. In fact, if he had been an animal, his carers would probably have been prosecuted, Horrifyingly, we were told that the Human Rights Act, and all its clauses about the right to dignity, did not apply to care homes. So there he was, my father, a man in his nineties, who had paid income tax since the beginning of the Welfare State, had lived through two world wars, worked as a volunteer firefighter through the worst of the London Blitz, then fought for his country in the RAF, had never had a penny an any sort of benefit in his life, but at the end of his life, when he at last needed compassionate care, ended up in this fate, literally worse than death. And while others in the same ward had everything free, he was being charged for such dreadful treatment.
We were summoned to a meeting with the home manager to 'discuss our concerns' about his care. The social worker from Barnet came. Instead of pushing for our father's care to be improved, or demanding to know why he was still being kept in the terrible seating which she herself had told the home they must change, she kept silent. The manager shouted accusations at us: we had written to the CSI, the inspectors, to complain about her. We hadn't: just filled in the comment form and answered, supposedly in confidence, the questions of the inspector. We were told in no uncertain terms that if we continued to push for his care to be improved, he would be thrown out. The social worker did not defend us, or dare to protest, apparently for fear that no further patients would be placed there. We left the meeting shaken and terrified at the possible consequences for our father: seen and unseen.
We tried desperately to get him another home. There was nowhere in the area that could accommodate his needs. We found one place which charged thousands of pounds a month, part of a huge international company which presents its homes like some sort of hotel for slightly frail elderly people. The downstairs level of this place was like the foyer of a Marriott hotel, full of bored elderly people sat on overupholstered sofas, waiting for something to happen. If the thing that happened was dementia, they were swiftly moved 'upstairs' where there were literally padded walls and a conspiracy of silence: the d word was never used there, only 'memory problems'. Once these patients became noisy, incontinent or otherwise troublesome, they disappeared. It was made clear that our father would not be welcome there.
On Christmas Day morning, I went to visit my father. By then, we had decided we could not bring his grandchildren to visit because they found the ward so frightening, so I would go on my own. I took one look at Dad, and knew something was really wrong. He was wild eyed, and feverish, and didn't know me at all, the first time that had been the case. Earlier in the week I had noticed he was hoarse and had asked for a doctor to check him out. I went in search of a staff member. 'Phyllis' reluctantly came. I said there was something very wrong with my father, had she not noticed? She looked at me contemptuously and said:'You must realise this is the nature of his condition: he has dementia ...' My brother and I insisted a doctor come. He took one look at him and called an ambulance, because he had pneumonia. He was rushed to hospital and died four days later.
Since he died, until last year, I made the point of reading the inspection reports of this home. Despite the constant poor scoring of the home, the same criticisms, the continual failures to meet statutory requirements regarding standards of care, it was still in business, without any effective sanction from any authority. That means that countless numbers of elderly people with dementia were and presumably are still being placed there and suffering in the same way as my father. Why? Because the authorities, both local and national inspectors, knew that they could not afford to lose the placements these homes supply. The homes will not put standards of care before profit, so they continued to flout the regulations without fear of reprisals. To provide better staffing, in terms of numbers and training, or better facilities and activities and accommodation for their residents, would cut their profit margins. So the standard of care they offer will be the most basic they can get away with, and they can get away with a hell of a lot. The manager of the home mentioned actually has done very well, receiving a big promotion within the company, which is cheering, isn't it?
Some things are different now: in some cases it is cheaper for the council to put together a 'care' package involving home care, if you are lucky, and if you are found decent carers. If.
There is a new body set up to regulate care homes, and perhaps a growing awareness of the issue of elder abuse, and the vulnerability of dementia patients in unscrupulous care homes.
And of course it doesn't have to be like this home was at all, if profit is given a less prominent priority. I used to visit the mother of a friend of mine who was resident in Nazareth House, a Catholic care home in the borough, where the religous ethos of the foundation afforded respect, compassion, and loving support to their elderly residents.
If, on the other hand, we really are moving into a Brave New World here in Barnet, where a Futureshaped council is skipping down the path to massive privatisation and the wholescale dumping of public sector responsibility, we can only expect a worsening of standards of care for elderly and vulnerable residents, and in many other areas. Profit must and will take precedence over the wellbeing of those needing support. Tendered out services will go to the company that offers the cheapest charges, and this can only be done with minimal standards. Cutbacks anyway will mean the loss of services and standards which we have always until now taken for granted. Don't say you weren't warned.
So, talking about -to - my generation - if you stuck through all this to the end - hope you die before you get old? No, don't do that: It's a Wonderful Life & all that, even in Broken Barnet. Just make sure that when you do get old, you're fabulously wealthy, or living somewhere else.
*This is Dementia Awareness Week, 4th-10th July 2010.