Dementia Care Homes

I am sure I am not the only person to watch Panorama yesterday, 23^rd April 2012, and be shocked and revolted by what I saw. This programme obviously focused on one dementia care home where the treatment of a particular patient was disgusting, indeed one carer deservedly received a custodial sentence.

Let’s not run away with the thought that every nursing home or care home is as evil and depraved as this one is, but equally, let’s not start to pretend that this is a unique situation. We have seen similar reports, though maybe not so graphic, probably every year, and from all parts of the country.

The things we saw on the Panorama show were not complicated, not in doubt, they ranged from incorrect procedures to mental and physical abuse, potentially, I believe actual bodily harm.

My concerns in this instance go so much deeper than the callous behaviour and violence of the so-called carers. Clearly the poor lady featured had bruises, was frightened and there were no lifting aids available in the room. A mechanical hoist was needed to lift her out of bed into a chair, a job for two carers, not one. Obviously the management would allocate two carers to visit, if they were following the procedures.

There was need for other basic equipment, such as a slide sheet, to move her in bed, again a job for two carers.

If this equipment is not available in the room, where is it? If it exists but is not where it should be, other carers would be aware, there was no evidence to suggest that was the case. The House Management are obviously aware if they have the equipment or not, after all they would pay for it, pay for the six monthly inspections of the hoists.

It is clear that the callous uncaring people who starred in the film are not the only guilty people in that particular home, yet again there was no evidence of others being involved in the disciplinary action, and no suggestion that the management were in any way penalised, which suggests to me that they will shake this off and carry on without changing, basing their complacency on the reports of the Care Quality Commission (CQC).

That brings me to a key point… the CQC. Just what do they do to justify their expensive existence. In my opinion they tick boxes for the government, and do precious little else.

In my Carer support role, we were invited to submit reports to the CQC about our experiences on the Acute wards, we did so, openly, and in a professional and constructive way. The report covered a number of pages, listed a number of problems in each of I think 7 different complaint categories. Each point we raised was a serious and disturbing failure, many jeopardised the dignity of the patient, most jeopardised the health, safety and security of either the patient or the carer… or both.

Imagine our surprise when the report came back, in our view whitewashing the wards and taking no action in terms of improving things. When we sought a meeting with the CQC, we were met cordially by three senior officers who waffled inanely through their story, but ultimately confirmed that when they do inspections they look at whether there are proper policies and procedures in place, and if the practice is to follow them.

They do not, and cannot, they tell us, inspect how well the procedures are carried out. The implication of this is that their reports reflect purely the theoretical performance of the unit rather than the actual performance, and do not pick up blatant incompetence or bad behaviour, such as we witnessed on the Panorama programme.

Is the example we saw simply a case of a few carers not delivering an acceptable level of care? I don’t think so, we have considered the existence of hoists, and their availability, if they are not available, the home cannot function, if they are available but not used, it is surely an endemic problem, which those in charge just must be aware of.

The CQC passed the home as being of a high standard… did they not notice there were no lifting aids? Were they not aware of patients with suspicious bruises? It is not possible to think this one poor lady was singled out for abuse and the other treated perfectly is it? What did the CQC actually inspect, and how? Clearly for them to have come away not condemning the practices, as they did at the hospital I was involved in, they have not checked things properly, they have in my view desperately let down the patients who have suffered so much, and their carers who have gone through so much heartache, upset and distress, as they have let down everyone who is involved with any hospital or care home that doesn’t deliver top quality care.

The things that come out of this are manifold… firstly the CQC accreditation means absolutely nothing.

Secondly, we are supposed to live in a civilised, advanced culture where we do all in our power, even pass laws, to protect our most vulnerable people. No-one is more vulnerable, in my view, than a baby or frail elderly person suffering from dementia, who has fallen victim to the condition through no fault of their own. Yet these are the very people we see abused in the care home. Alright, one carer, the one who repeatedly struck the lady, received a custodial sentence. Under the current health and safety legislation, if a worker, or someone on the premises, suffers an injury, the Health and Safety representative and indeed the responsible director can both be seen as guilty if there is any shortfall In standards responsible for the injury.

Clearly in this case the owners and management of the home can be seen to have failed to provide the correct level of care, and need to be penalised along with those who delivered the blows. The very least penalty should be to immediately bar them from any position where they are responsible for the care of vulnerable people. Will it happen, I doubt it. The law will allow them to continue making large sums of money from stressed, weary, worried people for the care of their loved ones, and repay them by cutting every corner and abusing their charges as before.

For anybody who, like me, is in the process of securing an appropriate care home for their loved one, how do we decide… what can we look at to satisfy ourselves the home is good… until the government installs inspectors with some bite, who will honestly investigate every aspect of the care, from policies to individual performance, as well as contingencies, there will be no way of knowing. It will remain a lottery whether we place our loved ones in a quality caring home or into the hands of abusers.

We cannot accept this situation any longer, we have to have guarantees of care standards in every single establishment where people are cared for, there has to be a procedure to remove and ban any individual not fulfilling their care responsibilities properly.

Until then, we hope, pray, worry…. And if we are lucky, if our loved ones are lucky, we find a good caring home for them. If not… we live with the regret and sorrow indefinitely.

Labelled - Support for Young Carers

I used to be judgemental… I could see someone at a distance and know they that are thick, or any other insulting term. I have seen much over the last few years that has taught me that you cannot judge another person without knowing their history, and even experiencing something of it.

We’ve all seen him, y’know, the lad at school, he’s often a bit late, often looks unkempt. The teacher asks for his homework, and it isn’t done. He may not have his lunch or his lunch money… You can bet he doesn’t hang out with the rest of the class at lunch time, he is on his own, looking lost, looking worried. He won’t be at the society or club after school with the cool guys because he runs straight home after lessons.

Yes, we’ve all met this lad, we may have been this lad, but it’s obvious he’s a stuck up little thicky.. that’s why we don’t talk to him.. he doesn’t want to mix with us, so he’s not normal. We don’t like people to be different so we abuse him… call him names… play nasty tricks on him… hit him…

Yes, he’s a thick geek, he deserves all we give him.

We’ve all been there… what we don’t know is that the lad lives with his single mum, and his two little sisters… we don’t know his mum suffers with acute depression… and even if we did, we wouldn’t know what it meant.

For this lad it means at 12 years old he is bringing up his little sisters unaided, he is looking after his mother who is incapable of getting out of bed most days… can’t wash herself… feed herself… look after herself… it is not her fault, she is ill. Depression is a nasty destructive illness that destroys sufferers, destroys their families, destroys everyone who is close to it.

Somewhere amongst all this the lad has to look after himself, feed himself, do his school work… he also has his mum’s medication to sort out and administer… he has the house to clean.

He is worried that if he doesn’t do it, Social Services will break up the family… he doesn’t want that, it is his life, all he knows.

He doesn’t realise that he is a carer, to him he has grown up knowing no different, to him it is normal… he suffers the bullying at school because he knows he is doing the only thing he knows… supporting his family.

He is a carer, there are hundreds of thousands of them in the country, many don’t realise that is what they are because it is natural for them to continue looking after their loved ones, whatever.

Our lad needs support, because before he has reached puberty he is all but burned out, has sacrificed his education, sacrificed his social life, and has no real life to look forward to… he desperately needs help, but is there any? You tell me.

At school the staff is unaware of what is going on, mum doesn’t come to parent evenings because she doesn’t care… they assume, because they are judgemental. His classmates don’t know about his family because he is a thick antisocial git, they are being judgemental. The neighbours have no idea, that family next door is standoffish and strange… they are being judgemental.

There simply is no support available for these tragic lost children… they are not even aware that they are suffering, struggling… to them it is natural, the normal way of things.

However, in Leicester, there now is support, a group of young carers and service users have found out the hard way that there is no support for them, so instead of sitting back and complaining, they have set up a magnificent organization called LABELLED… they are there to support young carers and young patients. They know how these people feel, what they are suffering, because they have been there, they are still in the position… but these people have set up the organisation to help everyone in the same position.

The organisation is in it’s infancy, but is already having an impact, is engaging with other Mental Health Service User and Carer support agencies to offer young carers a thorough and effective support package, , somewhere where they can talk to others in the same position, where they can find advice, support and crucially empathise, understanding and compassion.

If you don’t live in Leicester, is there a similar group in your area, if so, why not introduce them to LABELLED, would you consider setting up a group along the same lines. They will be happy to talk to you help you.

This project is a fantastic initiative by young carers for young carers, if you are a young carer, or know a young carer, or indeed someone who may be a young carer, put them in touch with LABELLED.

Next time you see a young person, or group of young people, don’t assume that they are trouble makers… obviously there are trouble makers amongst the younger generation… as there are in all generations… but there are a hell of a lot more good, honest , caring individuals…  Don’t judge that young lad who lives in that isolated way. find out why? Understand him… you may well find a hard-working, desperately unhappy, stressed out young soul who is at his wits end trying to cope with a lousy situation which is none of his fault.

The young people who have set up this fantastic project are a credit… they stand up head and shoulders above most of us, and when people talk of public recognition, these are the sort of people who should be being recognised, being lauded and given awards.

I for one am proud to know them and be able to call them friends.

What is Dementia

Dementia…. Alzheimer’s…. before you read on, say these words, think about them… what do they mean to you? What do they really mean to you?

Firstly, there are twenty-odd different forms of dementia, all subtly different in form and origin, but all displaying virtually the same external signs. I will use the word dementia to cover all of them

To me they were the rumour, the bogie man, something to fear…but  I had seen elderly relatives  succumb to dementia, you can somehow accept it in someone in the 80’s or 90’s more easily… yes, I had laughed at some of the more extreme things they had done… flushed false teeth down the loo, thought Trevor MacDonald was a friend who visited them every evening to tell them what was happening in the world, worn a tea-cosy as a hat… all these things and more, but that was all I had not seen. I had seen the truth of it… and neither have the majority of people in the country.

That is why the public at large do not understand the condition… do not understand what it does to sufferers… have no concept of what it does to their carers and family… and have no idea whatsoever that there is virtually no understanding of the condition, or support, whether financial or practical, for sufferers and their carers. They are basically on their own wading through treacle to find some non-existent help or resolution to a situation that can wreck so many lives.

You know what… It makes me bloody angry. Angry and frustrated that there is so little support for people, such vulnerable and needy people, who deserve so much more… whose families and carers deserve so much more.

I have now seen it at very close quarters and it has opened my eyes, it has frightened me and horrified me.

Never again will I fail to show these people the respect and dignity they so deserve. These conditions do not discriminate, there is nothing that can exempt you from it… not age, race, creed, size, colour of hair or what football-team you support… nothing. Every one of is susceptible. It is not brought on by lifestyle, it is not a lifestyle choice, and dementia is a hideously destructive condition that destroys sufferers, destroys their carers, destroys their families.

So what is it that makes the condition so awful… where do we start. For most people you don’t wake up one morning and have dementia, it builds, it grows… you see odd clues, but you cant recognise them other than with hindsight…

The memory isn’t so sharp, especially short term memory. It gets more challenging to make a cup of tea… perhaps you put in salt instead of sugar… The sufferer will get frustrated at these small changes, but to start with they will realise that they are wrong, but have no power to put it right. The carer also knows it is wrong, knows they can’t do anything to change it… deterioration can be slowed down… but it cant be stopped or prevented…

The sufferer will live in a twilight world, unable to make rational decisions, unable to look after themselves, but probably being aware they are deteriorating. Can you imagine that, how that would feel? For the carer, all you can do is help, try to help, try to make things easier… but it is not easy.

As the condition deteriorates, as inevitably it must, it becomes harder for the carer to help, the sufferer has less and less control of their body and mind and needs more and more support to simply exist.

Simple things we take for granted, brushing our teeth, choosing a shirt, making a cup of tea, knowing we need the toilet, are impossible decisions for the dementia sufferer… the carer has to think of it all.

Patience wears thinner for both, because this isn’t a nine to five condition, the carer is coping with their loved one around the clock, twenty four hours a day… there is no respite from it, because even if you do get some help, it is constantly weighing your mind down.

Patience wears thin, tempers fray… it’s inevitable… and the atmosphere in the house deteriorates… living is now almost impossible for both, for everyone involved. If you aren’t lucky enough for the ‘patient’ to be admitted to nursing care or hospital, you have an infinite battle, living your whole life purely to support your loved one… no social life left, no time for it, no energy for it.

If on the other hand they are admitted, don’t think it is any easier… there are some fabulous nursing homes out there… quite wonderful. There are however a lot that are less so… how can you tell which is which when trying to settle your loved one? Very difficult, there are extremes at each end that are obvious, but the majority are between, and the of course the difficulty is that the quality of the home is basically the quality of the staff… you can go to an awful house on a day when their better staff are working, looks different… or a good home when a poor staff member is in… again a false impression. It is important to find real unbiased professional help and advice.. But where from? I don’t know.

So, if your loved one is in a poor home, you will never again feel at peace, you will be constantly guilty about making a bad decision, constantly in fear of them suffering more than they need.

If they are in a good home there are still concerns… you are focusing on the condition… you are probably heartbroken that your loved one is missing out on life, is alive, not far from you, but cannot connect, cannot enjoy any of their hobbies or interests, could be missing out on seeing their cherished grandchildren or great-grandchildren… you can’t enjoy them yourself as you should for this reason.

Finally, with dementia, you cannot say “I’ve got toothache” or “my glasses need changing”... you could be suffering any number of physical problems, pains, without being able to make them known, without being able to get them treated, or ease the pain.

Two definite factors with dementia are that it is irreversible and it will shorten the life expectancy. God forgive me for thinking this… but that is the one bright thing… I simply can’t bear to see my wife suffering like this, potentially for years… she is not happy, probably not unhappy either… she just is… that, for me as a carer is the most painful thing… the bit I can’t cope with, and I will never be able to cope with.

So, next time that elderly person wears a tea cosy, next time they lose their teeth, next time they can’t find the way to the toilet in their own home, don’t laugh, don’t mock, don’t get annoyed… understand… it is a condition they haven’t chosen, can’t control, it is the condition behaving that way… not the person.

If that doesn’t help, think of this… in six months, it is as likely to be you as anyone else in this condition… do you want to be laughed at, mocked… of course not… understand about dementia, accept that the sufferer didn’t choose it and can’t control it… treat them as you would want to be treated, help them support them. 

Depression to Dementia

Sometimes ignorance can be bliss, because it allows us to hope, even when logic tells us there is none. My wife was first in the hands of the Adult Mental Health Service, during this particular period of illness, almost 3 years ago. She had not fully recovered from previous bouts of clinical depression which had left her lacking any self-confidence or self-esteem, and with a seriously impaired memory. The current illness was, we are sure, a direct result of a host of personal traumas which took their toll on her.

She was admitted primarily because she was unable or unwilling to eat or drink causing her to become seriously dehydrated, and more and more confused and disoriented, which we couldn’t cope with at home. She was also seeing shapes and hearing voices, which were making her cower, even in the safety of her own sofa.

The diagnosis, after seeing a host of doctors and psychiatrists was acute psychotic depression.

Some months down the line, the psychotic elements had been quieted, but the depression was not lifting…. She was reviewed by the dementia team, the geriatric team and constantly by the psychiatric teams… no-one could come up with a diagnosis. The psychiatric team felt there was more than depression, the dementia team said that there was nothing in the countless scans and tests to point at a dementia diagnosis. As a result they continued to treat her for depression and continued to monitor for the other options.

Time carried on, after relations between myself and the consultant reached a depth that could never be repaired, she was transferred to a recovery and treatment unit, where she has been treated magnificently. Sadly however, there was still no improvement, and still no definite diagnosis.

To me, now over two years since her first admission, and 9 months since she had been able to speak or communicate something in my system was telling me that her condition was far more serious, and that although everyone was talking about when she goes home, I didn’t any longer believe that would happen.

As the months continued with no change, no diagnosis, hope was fading, but always there, it had to be, it was all that kept me going.

Eventually matters seemed to be heading to a crisis… I was diagnosed with diabetes 2 and made redundant. The diabetes is controlled with diet and exercise, and yes, I do pack a stone or two more than I should, so this inspired me to lose weight. The redundancy however, was a different thing, without a job I couldn’t afford to pay the mortgage, so would have to lose the house.

Imagine how that makes you feel… your wife is ill in hospital, may or may not ever come home, you can’t even keep the family home safe… It may not be justifiable to beat yourself up like this, but I can assure you it hits you hard, it takes away your confidence and self-esteem, puts you on the floor. It really does.

So, I made an appointment with her consultant to discuss the situation. She was so kind, so compassionate, but however you wrap it up, there is no easy way of saying “there is no likelihood that she will ever be able to return to the community, she needs too much care”

On top of everything else, this was a kind of final straw for me, I was totally shattered, demoralised, heading into depression. I was able to recognise how bad I was, and got to the doctor who gave me some anti-depressants to get me through this phase.

The antidepressants, and the family, kept me going, and I was starting to accept things, make progress, got the house on the market, started the process to get power of attorney, which is a fairly soul destroying process in itself.

We were scheduled a full case review in February, and my superb Rethink Carer Support came with my daughter and I to the meeting. The meeting went well, was calm, positive and productive. We finally had a diagnosis, vascular dementia, I was not surprised, it made sense and I had expected it, to be honest once you know there is no recovery the diagnosis doesn’t seem to matter so much.

So, my Rethink supporter and daughter were all concern for me, how was I taking it, was I coping with it? Well, yes I was…. Then… the following Tuesday night it hit me like a thunderbolt... this is real, it’s happening right now. My wife of 37 years has dementia, there is no recovery, things can only get worse from here on in… she doesn’t deserve this, no way… but it is happening, nothing can change it.

The sock full of wet sand hit me square behind the head again and left me in a bad way for a few days while the reality seeped in. So, it was with no little trepidation I face the following weeks… I was totally lost, bemused, un able to deal with basic things.

The day then dawned I was to start my new job as a Care Worker… I felt good, positive, and really up for it… felt so good to get involved in a job I was really keen to do. The training, for the first week, went really well, I was loving it, then the weekend came.

In order to move house, to downsize, I need to get rid of things, to get rid of some of my wife’s stuff that she will never again be able to deal with… so I started with her craftwork kits and materials… sorted them all out and invited the family to take what they wanted before I let friends have a choice and sent the rest to the charity shop. I didn’t realise how much this would upset me.

Monday, back to training, and a call from the hospital… your wife has turned aggressive… she has attacked a fellow patient. Next phone call was from the Social Worker to say he was identifying a place in a care home… now I wanted this, but these two calls added to the upset of the weekend… left me feeling so stressed…

The next day however, finished me… the call was to say that her condition was deteriorating because she was now refusing all medication as well.

I suddenly was aware that all of the stress and depression symptoms were crowding in on me again… I was really suffering… worried I was heading into depression again.

I went to work, realised I couldn’t take the pressure, didn’t need the stress of work right now and went home. As the day wore on I got worse, much worse, and went to see my GP next morning. The advice was to take a break, relax, do stuff I enjoy to reduce the stress and fight off depression… and when I felt like it in a week or two, to look for a job that wouldn’t challenge my emotions or put me under any real pressure… So, here I now sit, on the edge of depression, without work, without any motivation or care about things… and feeling wretched.

So, after all these years of depression, all her suffering and trials, my wife is now consigned to living in a nursing home, unable to look after herself, unable to communicate whilst I carry on in the world, living my life.

It would be foolish to say however, that all is well for me, I have lost the love of my life, but know that she is living a mile or so away in some sort of twilight world which we don’t understand… which frightens us. It has shattered my confidence, left me teetering on the brink of depression, lost me the chance of doing the job I want to do, and possibly any job, has put immense pressure on my family.

I know that there are many thousands of people in the same situation as me, each of us joined by a common bond, but each separated by their isolation in the position as carer. Each one knowing that Dementia does not rate very highly on the scale of research and care, and that as far as the medical fraternity and government support services are concerned, dementia, and mental illness sufferers cannot argue so are consigned to obscurity and a total lack of support and commitment.

We are all in this together, we are told… hmmm… I don’t think so.