Wednesday 25 September 2013

Turning the air blue

Many families who have a loved one living with dementia will know the moment only too well when a perfectly innocent greeting, question, conversation or even silence is broken by a swear word that prior to their loved one’s dementia would rarely, if ever, have been uttered.

Whilst those words sometimes come from family members themselves (we all get stressed sometimes!), it is potentially even more likely to have come from the mouth of the person living with dementia. They may have never previously used such language, and at the time of using it, there may be no outward sign of anger or frustration to make the use of it more understandable.

As a family you may be upset or irritated by its use, particularly if it seems to be directed at you. I’ve known families who have found such language so difficult to cope with that they have stopped taking children to visit a loved one, or indeed stopped going themselves. So why does dementia manage to produce this type of language from previously innocent mouths?

For me there are lots of reasons, but I will start with the most obvious. Think for a moment about what living with dementia might actually entail. Put yourself into the shoes of someone living with dementia. Close your eyes and imagine how they feel and what every day, hour and moment is like. Take a look at this guidance from Kate Swaffer, a lady living with dementia, to help you.

It is notoriously difficult for someone without dementia to actually accomplish this task, and even if you do, you are likely to have only hit the tip of the iceberg in terms of what dementia is REALLY like. I suspect, however, that after such an experience you might feel the need to use some pretty extreme language yourself, and if you do you are potentially a step closer to understanding the relationship between dementia and bad language.

There are other more specific symptomatic reasons too. Dementia is associated with a loss of inhibition for some people, therefore as well as being more free and disinhibited in their actions - for example in their sexual expression (as I wrote about here) - their language will potentially also follow suit. Dementia is likely to produce huge communication difficulties too. When someone cannot find the word or phrase that they need, a swear word may sum up how they are feeling, or indeed may be the only word that comes to mind at that time.

Dementia is characterised by a range of emotional reactions, and each one is likely to have bad language attached to it, mostly notably anger. The swear word(s) may be accompanied by physically lashing out, or the person may appear outwardly completely calm. In the latter example swearing may seem inappropriate or unnecessary to us, but who are we to say how the person with dementia is feeling, what they are going through, and what the correct language to express that is.

Like it or not, bad language is a form of communication used by many people. It is commonplace in society, on TV and in films, and indeed for some people forms the basis of how they express themselves in a range of situations, both positive and negative, on a daily basis. Yet somehow we feel it is acceptable to hear it from a builder, or a teenager on the street, or a couple who are arguing, but not from a person with dementia.

Perhaps that is because someone with dementia may be older, and therefore we have different expectations or standards of conduct that we expect from our older generations. Or perhaps it is because we take it too personally, feeling that such language is being used to attack us, when in reality it is entirely due to how the person is feeling or experiencing their dementia in that moment.

Swearing is labelled as antisocial in dementia care and considered by many to be a ‘challenging behaviour’. Yet have the people who are passing these judgements also considered the ways in which their own actions, however well intentioned, might encourage the production of such language. Taking away someone’s independence and their chance to achieve could irritate them. The fact that they need help with personal care, like incontinence care, could feel very upsetting or humiliating.

Most crucially of all, failing to see the person and only seeing their dementia, and depriving them of person-centred care would quiet justifiably lead many people to resort to swearing as a means of protest and a cry for help. Again, put yourself into their shoes – how would you feel? Maybe you’d want to utter a few uncharacteristic words too?

The delicate nature of our own emotions can lead us to take such outbursts to heart. My dad sometimes used language during his years with dementia that no one had heard him use before. Sometimes he would look you straight in the eye and use it, and it’s hard not to feel shocked and hurt. I know my mother found a particular word that my father used towards me on one occasion very hard to take. I, however, smiled and dad duly smiled back – before long we were all laughing again.

Defusing the situation can be important in those tense moments when the air turns blue. Also looking for any underlying cause as to why the person has used bad language, such as trying to express an unmet need or protest at a particular action. On that occasion with my dad I was giving him a manicure, a necessary task to stop him from scratching his skin until he bled, but not an experience he had ever enjoyed.

His language, though extreme in proportion to the situation, was his way of explaining how he felt. If that was the only way he could explain it then it was necessary for him in that moment, and for me, no real harm done – sticks and stones and all that. I loved my dad before he said it and I loved him just as much afterwards. A simple example of still seeing the person, not their dementia.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Saturday 21 September 2013

Reaching for the stars

It seems very appropriate that today, on World Alzheimer’s Day and Dementia Awareness Day (DAD), I’m doing a Memory Walk for Alzheimer’s Society, hoping that memories of my dad will give me lots of inspiration and strength for the 10km. Sometimes the symmetry of life is simple and yet so very clever.

The walk will have a two-fold benefit in A) getting me a bit fitter (exercise being good to prevent dementia and a host of other diseases), and B) raising money that I hope will go into funding vitally needed local services to support people to live well with dementia in their communities. It will, of course, also help to raise awareness of dementia, but for me that is where Dementia Awareness Day really comes into its own.

The blog I wrote for last year’s Dementia Awareness Day – ‘So how much do you know about dementia’ – remains to date one of the most popular blogs I’ve ever written. It explodes myths, busts stigma and re-enforces the messages that are most likely to help people to live well with dementia, and indeed create more dementia friendly communities for them to live in.

All of the work I do is about using my personal experiences to inform and educate, support and empower. Looking over my blog, I honestly wish I’d had this resource when my dad was first diagnosed (and indeed before that point), so I hope it helps to fill that gap for families who are living with dementia today.

Being an ‘Expert by Experience’ is an honour. However hard my dad’s dementia was at times, it was a privilege to be entrusted with caring and loving him when he was at his most vulnerable. To be that close to someone who had given me so much (life no less!) is special in a way that words really cannot accurately do justice to. You really had to have been there.

If there is one thing I wish I could give every person, it’s the uniquely special nature of those moments without the pain that dementia causes. I wouldn’t wish dementia on anyone, but I would wish for everyone to be able to learn the life-lessons that I did. If I could bottle that, I’m sure the world would be a better place.

In many ways I’m an idealist, a person who sees good before bad, hope before despair, and who tries to make the best of every situation. I care so passionately about looking after humanity, and making the lives of our most vulnerable people the best that they can possibly be. I want to inspire everyone to love our older generations, and to make living with dementia – at any age – about living and not just dying.

Sometimes I want to reach for the stars, then I remember that I’m only 4’6”! But days like today are a reminder that we can always push ourselves harder (my 10km), that raising awareness of dementia with just one more person is an achievable aim for everyone (DAD), and that the love of those who are such a focal point in our lives never dies. Somewhere up in the stars my dad’s watching, and with his help who knows what is possible.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 18 September 2013

Diagnosis – The day and the aftermath

Given that dementia is one of the most feared, if indeed not THE most feared disease in the UK and beyond, you could probably turn the moment of diagnosis (worldwide a new diagnosis of dementia is made every four seconds) into the basis of a horror story.

It is truly the news that no one wants to hear, and however much it can help to explain that which seemed unexplainable, it is for any individual and their family a life-changing moment. You may well feel angry, numb or very emotional. There may be tears, or it may be all about trying to maintain a stiff upper lip. In the hours, days, weeks and months ahead there will be questions, so many questions, and potentially a scarcity of answers. Of course some questions are unanswerable, the most notable being “Why me, why us?”

Then there will be the decisions, which you may be advised not to rush, and yet may feel you want to get out of the way just so that you don’t have to continually mull them over in your mind. How are you going to break the news to your family and friends? Do you even want to tell them? What about advanced care planning? Can you face making plans for a time when your dementia will be advanced and you aren’t able to participate in planning in the way that you can at the moment? Do you have a will and a Lasting Power of Attorney in place?

Add into that potential areas of conflict with your partner or those closest to you. Maybe they want to tell people about your dementia but you don’t want anyone to know. Maybe you don’t want to call what you’ve been diagnosed with ‘dementia’ through fear of stigma, but your partner does. Maybe your family want to access help and support services that you don’t feel ready to be a part of yet.

If coping with all of this wasn’t enough, crushing moments when you cannot hide from the truth can crop up unexpectedly and with alarming regularity. Handing in your driver’s licence. Visiting your GP. Having your ‘behaviour’ explained by your partner to people who have no idea about dementia, or a very stigmatised view. The sympathy that flows when people hear about your diagnosis – sympathy that you know is well-intentioned but makes you feel even more like a patient. Or the fact that friends and family stop talking to you and only talk to your partner. Even small things, like applying for travel insurance, can remind you of your diagnosed status.

Inside your head you may be thinking that you’ve let everyone down. You may feel as though you’ve been robbed of your future and the plans you had to enjoy your life. You may dread the thought of needing care, or of having to watch your partner caring for you. You may be wondering where you will live and how you will afford to pay your bills. Indeed, may just want to scream, cry and kick something (not the cat!).

For people who’ve been diagnosed with young-onset or early-onset dementia (dementia in someone under 65) there are often additional considerations. You may have to decide how to tell your employer. You may be facing losing your job and potentially not being able to pay your mortgage, and likewise for your partner if you need them to help care for you. You may still have dependent children who are relying on you, or ageing parents who need you to be caring for them in their mature years.

In short, a diagnosis of dementia has a ripple effect throughout every aspect of life that affects not just the person with dementia but everyone who knows and loves them. For most people, that life-changing moment of diagnosis will come during an appointment with a consultant specialising in dementia (an old-age psychiatrist), in potentially a very clinical setting, often with little offered in the way of help and support largely because the clinician hasn’t been given resources to signpost you to.

It may come after many months of waiting following your initial consultation with your GP, and will usually be as a result of extensive tests at your local Memory Clinic. It may not be a shock, or it may be the biggest shock you’ve ever had, but it’s important to remember that whilst so many aspects of your life may be set to change over time, fundamentally you walk out of that consultation room the same person who walked in.

A diagnosis should never mean that you go from being a vibrant, hopeful person to someone who cannot see a way out of the fog. Everything that you could do before you walked into that room you can still do when you come out of it, and if you are to live well with dementia you need to keep on doing as much as you possibly can for as long as you possibly can. It’s easy to get blogged down in the really tough stuff, most notably wondering how you may decline in the future, but if any disease should make you want to live for the moment, it’s dementia.

My dad astounded many a medic by living for 19 years with dementia, and having quality of life very late on. Back when my dad was diagnosed we didn’t have Memory Clinics, and due to the haphazard nature of how dad’s dementia was supported (or rather not supported) during the first ten years of his life with the disease, dad’s diagnosis came while he was an inpatient in the local hospital, with his ‘team’ diagnosing and us as his family simply being informed that he had been moved to an Elderly Mentally Infirm (EMI) Unit. When we asked why he had being moved, we were bluntly told, “He has dementia.” Only after demanding to see one of the consultant psychiatrists in charge of the unit did we understand a little more, but I can honestly say that pretty much we just had to ‘learn on the job’ , and we were still learning nine years later when he passed away.

In many respects, that is the nature of dementia. A few people have a very rapid progression into the advanced stages of the disease, and indeed pass away quite quickly afterwards. For most people, however, the decline is far slower, enabling a huge amount of occupation and enjoyment in life that provides priceless memories. My hope is that as we improve awareness, understanding, care and support that everyone’s experiences of diagnosis and the aftermath will be less of a horror story and more of an inspiring story.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 11 September 2013

A sense of loss

I’ve summed up previously about the feelings of loss associated with dementia, but given the enormity of this emotion for so many families I feel a greater exploration of this subject is very much needed.

One of the most common questions I was asked during my dad’s dementia was, “Does he still know who you are?” In my mind, and taking into account everything that represented expression and communication from my dad, I always felt confident in replying “Yes!” For many families, however, the answer is less clear-cut, and that is just the tip of the iceberg when it comes to the emotional impact of dementia.

I think at pretty much every point in a loved one’s dementia, from the onset of symptoms and eventual diagnosis, through the period of time that follows - as everything that represented your life with your relative gradually, and sometimes suddenly, changes – to the more advanced stages and then eventually end-of-life, one thing that never leaves most families is that sense of loss.

It is characterised by observing the changes in your loved one that indicate what they are trying to cope with, changes that provide a constant reminder that dementia has invaded your lives. It is enhanced by not being able to communicate with them as you once did, leading potentially to that devastating time of feeling that they don’t know who you are, and it is ultimately driven by a constant sadness that life will never be the same again, that dementia isn’t curable, and that you face a future you never expected and do not feel prepared to cope with.

For many families, this accumulation of circumstances can replicate something akin to the grieving process. It is common to feel angry, upset, bewildered, confused and numerous other emotions as a result. That sense of loss isn’t easy to comprehend or deal with, it can creep up on you and become very overwhelming, and for some people it can make them feel that they don’t want to see their relative any more.

Watching the decline that comes with dementia is tough. Trying to remain positive for your loved one’s sake, whilst feeling empty and desolate yourself is a very hard show to keep on the road. At some point I think we all break down, but it’s really important not to beat yourself up about that. We are human; feeling and showing emotion is natural and should never be condemned.

The greatest problem when you feel you have lost something is wanting to find it again. We will turn our home upside down if an important document or item goes missing. If we lose the love of our life, we can spend many years hoping for a reconciliation before potentially both parties find that having been apart they simply can’t live without each other. Dementia, however, doesn’t offer quite the same opportunities for resolution.

Instead, coping with that sense of loss means adjusting to a new reality. Potentially you will be taking on a different role – for example becoming a parent to your parent, or a carer to your spouse or partner. Additional responsibilities may well come your way, and over time you could find yourself searching for new and ever more innovate ways to find happiness together, or simply exchange thoughts or emotions. And yes, ultimately it really can end up feeling like the weight of the world is on your shoulders.

Unfortunately this whole new world can often only heighten your sense of loss. At the very time you are craving normality and the life you had, you are having to adjust to a different set of rules and expectations. Why does it hurt so much? In my view, the more it hurts and the deeper that sense of loss, the greater the love is that you feel for your relative. The searing pain of loss is always most acutely felt for the people we love the most, and it is that love that hopefully sees you though the sense of loss that you are feeling.

In my case, my love for my dad did just that. It was never easy to always see beyond the situation we were in together, nor did a day go by when I didn’t dearly wish I could change things and put them back to how they used to be before he developed dementia. Sometimes the more immediate battles over care and support became a distraction from the emotional toll, but it was always there, waiting to hit us hard once again.

Coping with your own sense of loss is something that is very individual. I can’t promise it gets any easier, nor that you won’t re-live it all over again when the end of your loved one’s life comes. The sense of loss you feel over a death, during the planning for a funeral and afterwards, in some ways feels more natural, and is perhaps more easily understood by people without experience of dementia, but for me I found it quite exceptionally painful, purely because I still wanted my dad to be alive, regardless of how his dementia affected our lives.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 4 September 2013

Restraints – The dark side of care?

"They kick, punch and bite us, what do you expect us to do?" The words of a social care worker caring for people in a residential dementia unit, explaining why they sometimes have to physically restrain their residents or request prescriptions for antipsychotics.

The use of restraints is only legal in England and Wales if it is covered by a Deprivation of Liberty Safeguards (DoLS) order which, according to recent figures released by the Health and Social Care Information Centre, have increased year-on-year since their introduction in 2009. 11,887 applications were made in 2012/13, of which 54 per cent related to people living with dementia, but as a society how do we feel about restraining people with dementia, even when it is done legally?

Restraints can involve using bedrails to keep someone in their bed, straps to tie them to a fixed object, seatbelts on chairs or locking them in a room. I’ve seen care home residents belted into wheelchairs to stop them from moving about – although one gentleman proved sufficiently strong to get to his feet and move around with the chair attached. I’ve also seen residents who have been strapped into wheelchairs injure themsevles trying to get out of the chair, with chairs ending up on top of them or arms and legs getting entangled with metal.

As far as bedrails are concerned, I saw extremely high ones used on a man in a hospital bed to try and prevent him moving around the ward, but this was entirely inappropriate since he managed to climb over them on numerous occasions and eventually hurt himself as a result. Very low-level bedrails were used on my dad’s bed in the last couple of years of his dementia, but my written consent was obtained before they were used and their purpose wasn’t as a restraint, but purely as a safety measure to ensure he couldn’t roll out of bed onto the floor (he was already immobile so wasn’t being prevented from getting out of bed by them, merely from falling during his sleep).

The use of antipsychotics was of course once commonplace in dementia care, as I wrote about here, with my dad enduring a period on this type of 'chemical cosh' medication before we managed to get it stopped. I am still regularly contacted by families who are having to cope with the trials and tribulations of having loved ones with dementia on antipsychotics, despite such prescriptions now being seen very much as an absolute last resort for only the most severe dementia symptoms when all other interventions have failed.

So how do you cope as a care worker if you are going into work every day and being kicked, punched and bitten? The answer is you potentially don’t, but more often than not that is due to a failing in the system, rather than something the person with dementia or indeed the person caring for them can control. If anything, those two individuals are the biggest losers in a system that too often resorts to factory farming our older people. A lack of funding for care has led to cutbacks in staffing levels and specialised training in many organisations, and the result could be described as a return to the dark-ages of care provision.

What is perhaps most alarming about the situation around DoLS applications isn’t the number of applications being made or indeed the number being approved, it is the persistent fear of how many restraining practices are being used illegally. Behind closed doors many ‘professionals’ are looking for a quick fix for ‘challenging behaviour’ that will take up minimum staff time but provide maximum effect in terms of containing someone who they see as a problem. For them, a DoLS order isn’t necessarily a priority, particularly as they would need to show that the restraint measure being proposed is appropriate, in the person’s best interests and is the least restrictive possible.

In my mind, depriving someone of their liberty should only be done in the most extreme cases, when all other avenues of care and support have been exhausted and the person with dementia is a direct danger to themselves or others around them. To avoid the need for restraining measures, organisations may need to implement institutional changes in the way care is provided in order to alter staff behaviour resulting from a cultural lack of understanding of dementia, with someone leading those changes who believes that there is another way to approach dementia care.

If staff have never been trained in how to cope with someone experiencing severe dementia symptoms, like aggression, confusion, walking, problems with orientation or issues with sleeping, they are likely to feel out of their depth and looking to resort to restraining methods to protect themselves and those around them. It’s a natural instinct, but it is an instinct that never needs to be seen if an organisation is capable of responding to the needs of individuals with appropriate staffing levels and by embedding a culture of person-centred care throughout their organisation.

I’m not saying that dementia is an easy disease to manage, but however hard it is to look after someone experiencing it, it is far harder for them to actually be living that experience or indeed handling the consequences of the actions of those who are charged with caring for them. Sadly most organisations are so financially squeezed that they are operating on budgets that don’t allow for either specialised training or one-to-one care provision, therefore restraints, be they physical or pharmacological, are a cheap, simple solution.

In situations where that is true, I feel a deep and profound sense of shame that we cannot respond in any other way, and even when organisations have a DoLS application approved and are acting entirely within the law, I struggle to comprehend how we cannot enshrine in law care practices that could avoid the need for restraint altogether. Idealistic maybe, but consider this. Dementia may remove someone’s ability to be proportionate in their response, but those not living with dementia cannot claim the same. In my mind we must always be proportionate in our response.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886