These are the heart-breaking
words of 98-year old Yvonne Grant, calling for someone to help her to the
toilet in secret filming captured by her family and aired by Panorama ‘Behind Closed Doors: Elderly Care Exposed’.
In this
hour-long programme, viewers are shown older people in care homes being
neglected and abused, call bells being ignored, verbal and physical assaults,
and staff who are either completely unsuitable for the job they are doing or,
as a few glimpses of footage show, some very good staff who - whilst
overstretched - are caring people who want to do their best for the frail
older people who are depending on them.
For me, having
been by my father's side through 9 years in social care (punctuated by spells
in hospital), I saw things then that didn't represent good care on more than
one occasion, and as I have already written about, I had cause to call in CQC
when my father's care deteriorated (‘From care to catastrophe’). Whilst I have
never seen the type of physical abuse depicted in the programme, it's important
to remember that many aspects of poor care aren't any less abusive just because they don't involve physical violence.
You will
struggle to find anything in this programme that represents what most people
would want care for their loved one to look like, defined in the current
overhaul of CQC’s inspection process as ‘The mum test’ – namely asking if a provider
is delivering care good enough for our mums and dads, grans and granddads,
siblings, cousins and wider network of loved ones. New key-lines of enquiry for
CQC inspectors will ask if a service is safe, caring, effective, responsive and
well-led – everything that is absent in this footage.
In the
consultancy work I do now I've seen practice that wouldn't pass the 'mum test'
for me. Providers don't always get it right, sometimes through failings they
want to learn from and make long-lasting improvements because of. However in
other cases, as we heard in the Panorama programme, there are some providers
who are ‘content’ to bump along the bottom, treading the fine line of previous
inspection regimes that defined a provider as being either compliant or
non-compliant.
As members of
the public we expect that regulation of care providers will root out all poor
practice, but as the Panorama programme clearly showed, regulation alone isn't
enough. From my personal perspective, it certainly wasn’t enough to prevent my
father from aspirating on his own vomit five times and being admitted to hospital
with aspiration pneumonia and pressure sores.
The overhaul of
the CQC inspection process that is currently out for consultation –
including looking at the issue of cameras in care homes - gives me some hope for the future, but however
robust inspection becomes, and however much quality and innovation is made an
intrinsic part of the regulator's role, CQC alone cannot ensure that every
service is good enough for our loved ones.
Inspection is
but a snapshot of a service. Done well by a team that includes a well-trained
inspector, an expert by experience and (where necessary) a specialist expert
(for example in dementia, palliative care or pharmacy), against key lines of
enquiry that focus on what good should look like, it will expose most services
that require improvement or are inadequate.
For me, however,
the real key to unearthing insidious poor practice (and equally excellent
practice) comes from intelligent monitoring. In other words, whistleblowing
staff, relatives and visitors, including visiting health and social care
professionals - the people who see what happens on all the days of the year
when the CQC team aren't present.
In an ideal
world we would all be the eyes and ears of CQC, but in practice whistleblowing
has become a concept that instils fear whenever someone considers it, as I
described in ‘Putting your head above the parapet’. Fear in
professionals that they will be ostracised and deemed unemployable, fear in
relatives that their loved one will be victimised because they have spoken out,
and fear from those receiving care that they will be silently killed for
complaining.
In that climate,
poor care and abusive practices can proliferate and this must change. We need
the culture of whistleblowing to be encouraged and respected. Confidentiality,
alongside a proper weighting of evidence - rather than a previous attitude of
ignoring what hasn't been corroborated over a long period of time by numerous others (who may be too
frightened to speak out) - is vital.
There are other
suggestions too. One of the most innovative ideas I’ve read is that care homes
should have boards of governors in the way that schools do. Private sector care
providers are offering a service in the same way that private schools are, and
both exists to nurture vulnerable members of society, just at different ends of
the age range. Governors that are drawn from a cross-section that includes
representatives of those receiving care, relatives, friends, health and social
care professionals and wider community leaders could rejuvenate every aspect of social care.
It cannot be the
case that we rely on TV programmes to occasionally shine a light onto the
plight of a minority who receive a service that is so short of being caring it
shocks the nation. Families resorting to installing cameras to prove what is
happening to their loved ones, and then watching in tears as the full extent of
their suffering is revealed, proves that we woefully short of a culture of open
accountability.
As a nation we
have to demand better for our loved ones. As professionals we have to find a
way to deliver better care. And as the majority of good social care providers
would say to the minority who are failing: If you can't deliver a service that
is safe, caring, effective, responsive and well-led then go into another
sector, far away from the care of vulnerable people.
As Yvonne said: “Will
you help me, please?”
Until next time...
You can follow me on Twitter: @bethyb1886
Advanced dementia brings
many challenges for the person living with it and also their family and
carer(s). Not only can you often feel like you need to be a bit of a detective
for your loved one (as I described here in relation to detecting pain), you can
also find yourself baffled by what can appear to be very simple problems that
frequently prove quite difficult to solve.
Drawing upon our experiences with
my dad, and judging by the correspondence I receive about problems that are
troubling carers, families and professionals, there are some common issues that
many of us struggle to find solutions to. In this blog post I'm going to tackle
five of them, starting with something that plagued my poor dad.
Dry/Itchy skin
There are few more distressing
conditions than those that irritate our skin. The skin is the largest organ of
the body, but unfortunately as we age our skin becomes thinner, more prone to
bruising and tearing, and can suffer immensely from poor diet, dehydration and
a lack of attention to detail in cleaning and moisturising.
If a person becomes incontinent the delicate genital skin can become very sore and inflamed if it is
kept in contact with soiled pads. Equally, if a person can no longer
wash themselves, those assisting them are unlikely to do it with the same vigour
and thoroughness as the individual themselves would have in years past, mostly
because we are all naturally worried about hurting anyone we are caring for.
Other problems can include
difficulty in getting someone into a bath or shower, increasing the temptation to use deodorants or
perfumes as very inadequate substitutes. Continuing to use very harsh
commercial washing products, rather than switching to more natural alternatives
(that can be found online), can dry and irritate the skin. A person with
advanced dementia can also scratch skin until it bleeds out of boredom, so
fingernails must be kept short and neatly filed.
A washing routine that involves a
full body bath or shower is vital - bed baths, though sometimes necessary, are no
substitute for a proper wash and rinse in the long term. Switching to natural
washing and moisturising products, alongside non-biological laundry detergents,
should help to eliminate irritants. If you are assisting a person to wash, make
sure that when you've washed and rinsed them that they don't have dry scaly
skin remaining, particularly on their scalp. This often doesn't get washed
properly because of the hair covering it, but scaly skin washes off with a few minutes
of a soapy head massage. Dry the person’s body thoroughly and apply a natural
moisturising product - anything containing alcohol is likely to dry the skin
(and that includes common prescription preparations that are meant to solve dry
skin).
One final tip, the smells of
familiar cosmetics or washing products can be great for reminiscence, even if the skin can
no longer tolerate them. You can always spray perfumes onto fabrics (with care)
or create scent boxes, where you put individuals products or essential oils
into different compartments of a box and sit with a person recounting what the
smells represent to them.
Poor appetite
Thankfully this is something that
my father never had to live with, aside from the times when he was unwell, but
it is very common for people with advanced dementia to experience a poor appetite. I've written extensively
about digestion and eating, but there are a few more tips to
share with you.
Taste buds change as we age, often
becoming less sensitive. This is particularly true for people living
with advanced dementia, who are known to struggle both with tastes and textures
of food, as well as the act of swallowing itself. Ensure that dysphagia (swallowing problems) have been ruled out, alongside any dental issues. Make
sure meals are served at an appropriate temperature, in a pleasant environment with no distractions, and
that a familiar mealtime routine is used, including eating with your loved one
to encourage them to eat too. Be mindful of the tableware you are using, including cloths, plates and cutlery. Offer additional healthy snacks between meals if necessary.
Food must be appetising - even when
pureed. If in any doubt, try it yourself! Using food as reminiscence can work
very well for some people, but equally those with a flagging appetite may need
to be offered something new. Experiment with tastes and textures, and try
stronger flavours - for example sweet and sour, curry or Italian food. Make
sure that any drinks you are offering alongside the meal aren't tainting the
taste (avoid squash and go for water or natural juice).
Also offer a person opportunities
to stimulate their appetite, with activity that makes them hungry and access to
some fresh air. Finally, ensure you rule out side-effects of medications - even
if a clinician reassures you that a medication isn't causing appetite problems,
trust your gut instinct (pardon the pun). Many older people are on a cocktail
of different medications, and the interaction between them could easily cause
someone to go off their food.
Sleepiness
One of the things many families
find very difficult to come to terms with is the increasing sleepiness of their
loved one in the more advanced stages of dementia. A person with dementia may
sleep more than usual during the day, making the relationship with relatives feel even more distant.
It can seem pointless spending time with your
loved one if they are frequently asleep, but I always found the opposite to be
true. Firstly it's special to be the first person they see when they wake up.
Secondly, you can use the time for your own reflection and relaxation: There is
something very peaceful about a loved one sleeping, and I always found it the
perfect time to have a cuppa and put my feet up.
Increased sleepiness, beyond what
is usual for the person, can indicate infection, particularly chest or UTI, so
it's important to have those ruled out if you are concerned. Medications can
often cause sleepiness, particularly antibiotics, and again be mindful of
interactions between medications. Also think
about a person's environment - warmth and sunshine can be very sleep inducing
for some people.
Certain times of the day are also
more likely to produce sleepiness, for example after a particularly satisfying
meal or even from passing an overdue bowel movement. In trying to understand
sleepiness, also make sure you've examined night-time sleeping patterns – it sounds
obvious, but if a person isn't sleeping well during the night it is hardly
surprising that they are tired during the day.
The other, often overlooked, aspect
to why people are sleepy is because they simply aren't offered anything to do.
Imagine spending day after day sitting in a hot room with a TV blaring - most
people would prefer to be dreaming than be subjected to that. Offer gentle
encouragement towards occupation or activity, and suggest different activities
if your initial suggestions are rejected.
Constipation
Being
'bunged up' is awful for anyone, but particularly for a person who is immobile
and/or unable to articulate the discomfort they feel. Most people aren't great
at talking about poo, but without the regular movement of it toxins build up in
the body and pain and discomfort are rife.
If
a person can still use the toilet unaided, constipation may not be immediately
apparent to those who are supporting them, particularly if the person can't
express the problems they are having. If a person is using incontinence pads,
keeping a record of the soiling pattern of those is a useful indicator for
both dehydration and changes in bowel movements.
One
of the most important ways to prevent constipation is through good hydration
and a diet rich in fibre, including fresh fruit and vegetables. In relation to
diet, introduce different foods gradually or it may cause constipation to be
replaced with diarrhoea.
Exercise
is also a vital component in preventing constipation. People with advanced
dementia are often severely lacking in exercise if they have become immobile,
but there are still ways to help, included seated exercise programmes that are
offered with appropriate assistance. Even gentle massage of the belly can be
very helpful, but make sure this is conducted by someone who is an expert in
this form of therapy.
Finally,
again ensure that you have ruled out any medication side-effects or
interactions that could be causing constipation.
Feeling cold
Some of us feel the cold more than
others. As we age, everyone is likely to feel the cold more, particularly if
they have become immobile or lost weight. For most of us we can just get up,
switch the heating on, shut the window, move to a different room, put extra
clothing on or take a warm bath, but if someone cannot complete those tasks, or
struggles to articulate how they are feeling, then they could be sat frozen and miserable, potentially leading to other health complications.
Whilst being in an environment that
is too hot can be very unhealthy (hospitals and residential care homes take
note!), sensitivity towards ambient temperature will vary from person to
person. Infection and pain will also have a role to play in making a person feel cold or
hot.
A blanket on the knees, leg
warmers, cosy slippers, gloves/mittens or hats are all useful extra layers if
an individual is feeling cold, but be mindful that a person with advanced
dementia may persistently remove these items – sometimes because they are
uncomfortable or making them too hot, but also potentially because they are
unsure why they are wearing them or find the garments unfamiliar.
Think carefully about the
environment, possible droughts, positioning near windows or doors, and hot spots
(places where temperatures fluctuate in a room or between different rooms). When
the season’s change, don’t assume that because you shed an extra layer or are happy to sit in a conservatory with the door open that a
person with advanced dementia will feel the same. If a person is constantly losing weight,
they will also feel the cold far more.
Aside from asking a person if they
are warm enough, and reacting to what they tell you, observe them. Hold their
hand, stroke their arm or head, or give a gentle massage if they are happy with
that. Do they feel cold? Look at their facial expressions. Also be mindful of
any medical conditions that affect their blood flow, and always remember that if
they are poorly getting cold could make them worse.
Until next time...
You can follow me on Twitter: @bethyb1886
As those of you who read this blog post
last year will know, April is a difficult month for my family. While the
spring flowers come into full bloom, the lambs scamper in the fields and the
temperatures warm up, this ambush of fresh colour and new life contrasts with
memories of April 2012, a month that changed my life forever.
I've written about bereavement before,
but I've found that as the time passes and I reflect on coping with the loss of
my father, so my understanding about the process of grief and healing evolves.
The title of this blog post perhaps reflects that more than anything else I could
write. Put simply, losing such a close loved one is, I feel, a loss of innocence.
We associate innocence with childhood, and
arguably losing a parent during childhood would potentially be even more
life-changing. Yet as adults we aren't immune to feeling utterly bereft as a result of bereavement. I've heard
many adults describe losing a parent as being orphaned, even though society
generally only sees orphans as children.
When we are surrounded by the people that fill our
earliest memories and who are most closely linked to our life experiences we
feel secure. When one of those people departs, as is certain to happen one day,
we are confronted by the full force of bereavement - something we can never
really prepare for even if a loved one's passing is expected.
Life is not and will never be as it was, and unlike
many aspects of our existence this is something that we
have no control over - we cannot bring our loved ones back. The innocence we
had towards life, love and the complex web of feelings that joins all of that up is gone. I think for me this is most starkly
illustrated in a particularly bleak reoccurring memory I have.
I was with my dad when he died,
and life-changing though that was I could never have been anywhere other than
by his side. I recall it very vividly, and the aftermath, as first the GP came
to certify his death and then the undertakers came to move his body to the
chapel of rest. All first-time experiences for me, and none of them made any easier by knowing that
those moments were coming many days before they happened.
My most bleak reoccurring memory, however, is from over a week later,
when we visited dad at the chapel of rest before his funeral. Seeing his body perfectly presented but coldly lifeless in his coffin has haunted many a night-time for me. It is that image that forces my mind
to relive his passing, questioning if I should have visited the chapel of rest at all.
I think that memory remains so vivid, when
others associated with dad's death sit more peacefully in the back of my mind,
because it represented a loss of innocence for me. Dad gently slipping away in
his bed seems more natural than dad's body lying in a coffin. That visit to the
chapel of rest was very confronting and may never sit easily with me, which is a reality I have to accept.
It was a visit I made because I needed to see
for myself that everything was as it should be, but nothing could prepare me
for it or will soothe the memories it leaves me with, save for dad's strong
arms to give me a big hug and comfort me, something of course that can never
happen.
My mum tells me that losing her mum is still
incredibly hard to come to terms with 26 years later. Sadly I know many friends
who have faced their own bereavements more recently - for some the tears are
daily, for others the regrets are haunting. Some say their children have helped
them cope. Others have found strength through their faith. What I believe we
all have in common, however, is that loss of innocence. Bring brave in this new
world is a struggle that for some people becomes engulfing.
I've had conversations with friends about
acceptable time-frames for bereavement. How long is it 'ok' to grieve for? My
personal view is there is no time limit, nor is there an 'acceptable' path, a
one-size-fits-all coping method, or a magic solution. Some people say time
heals. With the two year anniversary of my dad's passing upcoming, all I can
say is that time has given me a mixture of emotions - the positive has been a
reflective perspective and a huge amount of love and pride in being able
to call such an amazing man my dad, but the negative remains those vivid
images.
Each of us will have our own positives and
negatives. No one can
jump inside someone else’s head and tell them how to
feel or cope or 'get on with life'. Finding your own way is one of the great unknowns
in bereavement. The only way to protect yourself from this is to have no one
and nothing in your life that you would ever or could ever mourn but that, for
me, really wouldn't be a life. The joy our loved ones give us is the reason the
pain is so acutely felt when they leave us. An irreversible loss of innocence that
binds us to our everlasting love for them.
Until next time...
You know that feeling you get after a meal when you've eaten
a bit too much and although you loved the meal you are wishing you had shown
a bit more restraint? Commonly known as indigestion, something I suspect all of
us have experienced at some point in our lives, it's usually easily remedied
and life resumes without giving much thought to our previously grumbly tummy.
Our digestion is one of the most complex and remarkable
systems in our body. It has always amazed me that it can take what we give it,
process it, extract what our body needs and eliminate what it doesn't. When it
works well it is what you might call a perfect ecosystem.
When it doesn't work so well, however, it has the potential
to seriously affect our quality of life. Sadly for a person with dementia, and
particularly as their dementia advances, this can create a myriad of problems
that at best will affect their sense of wellbeing and at worst can be a direct threat
to life itself.
Long before my father developed dementia he had a turbulent
relationship with his stomach. However, living with dementia brought with it a
huge array of problems for my dad's digestive system. At its worst he was
vomiting 'chocolate brown' - the terminology used to describe vomiting blood
from a bleed in the tummy. The cause of the bleed was most likely the aspirin
dad had been taking for years, prescribed to thin his blood to try and avoid more of the
clots that had manifested themselves as the mini strokes that had led to his vascular dementia.
At its mildest, dad's digestive problems were potentially
'just' indigestion. Without the ability to communicate, however, care staff often
missed the subtle signs of discomfort - rubbing the belly, facial expressions
suggesting pain, dad shifting in his seat repeatedly and
occasionally belching. Changes in bowel movements weren't so easily ignored,
but they could be misunderstood.
If a person with a history of runny stools is producing
runny stools that isn't unusual for them, providing it isn't with a frequency,
appearance or accompanied by other symptoms that suggest a more serious
problem. If they become constipated, however, that is unusual. Never is it
likely to be more important that you understand the person's history and
habits, and observe them closely, than it is with that delicate digestive
ecosystem.
During my father's time in care homes he was medicated with
laxatives one minute and then given bulking agents the next. Along with an
array of other regular medications (most of which were entirely unnecessary) plus frequent courses of antibiotics
(all of which listed stomach problems as a side-effect) I am quite sure his
digestion didn't have a clue what the hell was happening to it.
Other issues for dad's digestion came when he went through a
period of being unable to regulate how much food he needed, which had the
potential to lead to severe overeating, discomfort and vomiting unless it was
carefully regulated. For the last four years of his life he had a swallowing
problem (dysphagia, which I wrote about here), which meant a diet of pureed
food, unpalatable thickeners, repeated chest infections and a decline in his
gag reflect, which meant he would vomit regularly. He also became increasingly
at risk of dehydration.
Then, of course, there were the dreaded outbreaks of
diarrhoea and vomiting bugs in his care home, which always laid everyone low.
To dad's great credit and fortitude, he did well to maintain a fairly healthy
weight. Obviously as his dementia advanced and his physical health problems
increased his weight did gradually decline, but we tried anything and
everything to help him keep as much strength as possible.
The odds were largely stacked against us. Alongside
infections and the side-effects of medications came other problems. When dad
stopped walking, his digestion suffered greatly. Imagine having that
indigestion I describe in the first paragraph and being unable to get up and
move around to try and assist the digestive process? Digestive problems are
another key reason why supporting people to maintain their mobility for
as long as possible is vitally important.
Consider also how what someone consumes affects their
digestion. In a care home environment, you can't always eat your preferred food
at every mealtime. You may be given supplements to make up for a lack of
nutrients in mass-produced food, be subjected to additives including artificial sweeteners, and don't even get me started on the 'quality' of hospital food.
You may also be given foods that aren't friendly to your
digestive system. People can develop food intolerances at any stage of life,
and with a push towards high-calorie dairy products to help maintain weight, so
comes the possibility of a reaction to lactose. Certainly in my dad's case dairy
products became a major problem for him in terms of phlegm production, and how
this interacted with his dysphagia, all resulting in more vomiting.
Equally, consider how much gluten is included in most menus.
Coeliac disease can have serious consequences for a person's digestive system,
leaving them malnourished and at increased risk of stomach and bowel diseases,
even cancers, and will affect their absorption of nutrients, including calcium,
making osteoporosis more likely. You only then need a person to have a fall and
break a bone and the outcome can be premature death.
Diet and the consequences of it are also very serious for
people who have diabetes - a common long-term condition that many people live
with alongside dementia. For those individuals, the need to carefully regulate
their diet is vital to prevent a potentially fatal outcome. Dental health,
or lack of it, can also contribute to digestive problems if teeth are rotting
and poisoning a person’s body.
Even conditions like irritable bowel syndrome, that are very
common and yet poorly understood, require careful management to avoid 'problem'
foods and the possibility of severe pain and changes in bowel movements.
Indeed, the power of the digestive system is such that individual
'trigger' foods can be responsible for a whole host of problems, and not
necessarily directly related to digestion either - take for example migraine.
If you were caring for a person with dementia who had
limited communication, who had no history of migraines that you knew of and yet
began experiencing regular severe headaches, nausea and changes in vision, would
you consider their diet and digestion? Probably not, but keeping a food diary
might prove very enlightening if you need to eliminate food as a possible
source of their symptoms.
Part of the problem with digestion is that we just take it
for granted. We feel hungry, we eat, we go to the loo - at its best it is a
cycle of pleasure and relief that if it isn't giving us any problems we tend to
just ignore. Self-help is often the route to solving any digestive issues, but
as a person's dementia progresses that can become increasingly impossible for
them.
Understanding the delicate nature of the digestive balance,
the problems that can arise, and the effect they can have on a person's
wellbeing and quality of life - and at their most severe the person's will to
live - is vital to providing good quality dementia care. Alongside this it is
also important to keep in mind the effect of not just how the person feels
inside their body, but how they will feel if they have faecal incontinence and
are left sat in their own faeces, or indeed have vomited
and have been left with dried vomit on their body or clothes.
So next time you feel sick, have diarrhoea, are constipated,
have acid reflux or just have symptoms that can only be described as a sore
tummy, imagine feeling like that and being unable to help yourself or clearly
express your symptoms. Not a pleasant thought is it?
Until next time...
There is something universal about the
language of love. Across the world we may have many different words for it but
the meaning remains the same, and most importantly of all the endless ways of
demonstrating it transcend barriers. There isn't a word that can
truly convey the beauty or perfection of love.
Towards the end of 2013 I did a radio
interview where the presenter repeatedly quizzed me about why I chose to care
for my father instead of going to university and doing all the 'normal' things
that people in their teens and twenties do. My very repetitive reply was that
he was my dad and I loved him.
It was a simple sentiment, and I honestly felt
no need to be more expressive. Yet clearly my thought processes, emotions and
feelings were somewhat lost on the presenter, who seemed utterly baffled by
what I was trying to convey, so much so that he rephrased his question on
several occasions.
Is it really so difficult to understand that
you would care for a loved one because they are just that, a loved one? The
materialism of life, and the desire to climb the greasy pole to facilitate that
materialism that is educated into our children at ever younger ages, didn't pass
me by, it just never interested me.
Why? Because some things are more important. A
person is more precious than any 'thing' you could buy or have, and the
feelings a person can elicit in those who know them are more powerful than any
'thing' could hope to emulate. I never weighted up the option of a university
education and the potential for a high-flying career against my dad's needs.
Maybe that makes me very odd, but I know I'm not the only person who would have
acted in this way.
Millions of family carers do
what I did, some do much more, others less, but I would suggest most do what
they do because of love. For some it will be duty and they will feel burden not
love. For others it may be a situation of convenience or dictated by a
financial motivation. But for the vast majority it will be unconditional,
selfless love.
Wordsmiths far more illustrious than I have
tried to explain what love is, but as I said earlier, my personal view is that
it goes beyond words. It's actionable rather than explainable. You may think the
greatest manifestations of it come from major life-changing moments like
meeting your partner, marriage or the birth of a child, but as many a carer
could tell you, it can be far more subtle everyday moments.
Dementia taught me to tell my dad I loved him
every time I saw him. I say dementia taught me because a diagnosis of a terminal
disease makes it imperative that you make the most of every moment. There isn't
time to be bashful - you will have a long time to regret what you didn't have
the courage to say or do.
Saying those three little words was a verbal
expression of my feelings to a man who often never responded. But during the
moments when he did respond, and jumbled words along the lines of “Love you
too” came out of his mouth, it was like magic. Most days we settled for much
more subtle expression - a squeeze of the hand, singing a line in a song, our
eyes meeting or a reciprocated smile.
Really simple everyday gestures that ooze
love are amazing, and people with advanced dementia can have a real advantage
over people without dementia in those situations, since they rely so much less
on words and much more on action, however subtle it might be. If you as the
recipient aren't alert to those moments they may well pass you by. If anything
should motivate you to be more observant then that is it - believe me, it’s
worth it.
All the things you do as a carer, from the
simple to the complex, from the advocacy to the laundry, the shopping to
supporting eating and drinking, all of those contain subtle moments that show
your love. Moreover, during those difficult moments, the sadness, the
emptiness, the emotional rollercoaster of being a carer, it's the love
you feel that gets you through. Perhaps that is why the theme of love, of being
loved and feeling love, feature so prominently at most funerals - in the
toughest times, love can pull you though when you feel you cannot give any more
or go on being.
After that radio interview, I thought about
what might have prompted the presenter’s line of questioning, and the
persistence he showed in trying to elicit a different response out of me.
Perhaps university was the best time of his life and he felt I'd missed out.
Perhaps he thought the lack of a career and the financial security that could
have come from that had deprived me of opportunities to see and do things that
have now passed me by.
Or maybe he had just never been a carer. Or
lost a parent he loved. For anyone who has, I think my motivation for doing
what I did would be very clear. Of course the great beauty of life lies in the
fact that we all take our own path, for better or worse, and what was right for
me wouldn't be right for everyone.
Finding love, expressing love and
appreciating the many different ways in which love can manifest itself is the
greatest joy life can give you. Caring for my father was a privilege and a
blessing that I wished had never ended. It was borne though love, sustained
though love and lives on though my work, which incidentally I also love! The
joy of amour is truly a wonderful thing.
Until next time...
Given that healthcare was, for a very long time, a closed
shop in terms of opportunities for patient input and examples of the NHS listening
to the lived experience, we can but applaud initiatives like NHS Change Day and
NHS Citizen. I know a lot of people are cynical about improvement drives and
headline-grabbing enterprises, but if there is an opportunity to put the needs
of people with dementia and their carers in the spotlight then I am willing to
try it.
For those of you not familiar with NHS Change Day, we had
the first example of it last year and it received significant acclaim. It’s not
just for NHS employees, but for anyone with an interest, be it personal or
professional, in UK healthcare. The strapline of the campaign is simple: ‘Do
something better together’. Your pledge can be individual or organisational or
indeed anywhere in between. In fact there are very few ‘rules’ – the concept is
about gathering pledges that improve healthcare. For this year's UK Change Day you can make a pledge until 31 March 2014.
My pledge for NHS Change Day
2014 is as follows:
“I pledge to help everyone within health and social care
increase their understanding of dementia by sharing my experiences and
knowledge.”
Absorbing the unique experiences of people who are living
with dementia, and those who love and care for them, is vital to lift dementia
out of the shadows of stigma and improve care and support for all.
Make YOUR pledge to find 2 minutes to watch the film I made
for the G8 Dementia Summit http://youtu.be/hT7HtCvwmq4
which highlights my experiences as a carer for my father who lived with
vascular dementia for 19 years.
Find out more about my work on my website: http://www.bethbritton.com/.
You can support my pledge here.
NHS Citizen is a far newer concept, and is about gathering
ideas that can be fed into NHS policy making. The most popular ideas will be put
forward for discussion with the NHS board at the Assembly Meeting. Again there are very few ‘rules’ –
it’s about capturing your idea succinctly and then selling it to voters (voters
being anyone who registers with the site).
My NHS Citizen idea
is as follows:
Improved support for people with dementia and their carers.
People who are living with dementia and their carers come
into contact with many different areas of the NHS, from GP and community
services, to A&E, inpatient and palliative care services.
Dementia rarely exists in isolation, and many people who
develop it have, or go on to develop, other long-term conditions that require
specialist care. Over time they may also need emergency treatment for falls or
infections.
Improved support can benefit everyone, people with dementia,
carers and professionals.
Dementia is YOUR business!
If you are a Doctor, Nurse, HCA, Physio, OT, Speech and
Language Therapist, Chiropodist, Audiologist, Optometrist, Dentist, Dietician,
Pharmacist or indeed any healthcare professional who provides support for
adults (and particularly older adults) you will be meeting and offering
treatment to people with dementia.
Dementia is YOUR business and I believe that you deserve the
training and insight you need to provide the level of care that your patients
deserve and that you would want to provide.
You can support my idea here.
I won't deny that there is a similarity between the themes
of my NHS Change Day pledge and my NHS Citizen idea. Why? Because I believe
that both opportunities to highlight the needs of people with dementia and
their carers require consistent messages about listening, understanding,
awareness raising, training and insight.
What I’m proposing isn’t especially radical, and I’m not
suggesting that in some areas of the UK it isn’t already happening. Dementia
has had significant focus since the Prime Minister’s Dementia Challenge was launched;
indeed those advocating for people living with other diseases and conditions may well wish
that they enjoyed a similar spotlight. Being in everyone’s minds, however,
doesn’t guarantee progress.
I hear every day from people who are struggling with
dementia in their family. I also hear from professionals who are facing their
own struggles with an education system that doesn’t prepare them for
appropriately supporting people with dementia and their carers, and who must
work in systems and environments that are not remotely dementia friendly.
Whether NHS Change Day and NHS Citizen will make a real
difference to the lives of people with dementia and their carers is obviously
debateable, and potentially nothing will change in the long-term, but I want to
be positive and believe that together we really can do something better. My
pledge and idea aren’t one-offs, they represent everything my work is about. I
believe passionately that change and improvement are possible. Most significantly
of all, though, I believe that the vast majority of people who could deliver
those changes and improvements want to do so.
Until next time...
