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...
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...
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...
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...
"
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...
