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...
