Everything non medical to do with end of life care, including caring for the carers, caring for people with dementia, grief, bereavement, supporting each other, emotional support and our grievers leaf - an external symbol of grief to alert the environment that you have suffered a loss
In every Bereavement
and Loss workshop that I have facilitated over the years, regardless of the
role of the participant, the question of universal interest seems to be ‘what do we say when we don't know what to say?’
it seems is afraid of saying the wrong thing, and the more tragic the loss the greater
So why is
it so hard for us to know what to say when someone has been bereaved?
possible to say the wrong thing? Does it
matter what we say, as long as we convey by our tone of voice and facial
expression the fact that we care?
In both my
personal and profession experience there are certain phrases and actions that
are more helpful than others, but without any shadow of doubt the worst action
of all is no action at all.
don't know what to say, we may go out of our way to avoid the person who has
been bereaved by literally or figuratively crossing the road to avoid them.
Thus we are in a sense punishing them for something that was out of their
control. We are isolating them at a time when they most need support.
that sustains the person going through a crisis is the knowledge that other
people care. They need to be wrapped in a symbolic blanket of love and support.
So, how can we best comfort those in emotional pain?
‘I don't know what to say’ and ‘I’m so sorry
to hear’ are quite helpful expressions and cover most eventualities; ‘I wish I
knew what to say’ is another variation on the theme.
‘Is there is anything I can do?’ needs to be
backed up with something concrete. For example ‘if there is anything I can do
this is my e mail’ (for a work environment) on a personal level you could say ‘I
am not working on Monday, would you like to meet for coffee?’ Alternatively ‘I’m going to the supermarket
can I do any shopping for you?’ or ‘would you like me to pick up your kids from
school?’ if appropriate.
offers of help are often welcome and much more helpful than an empty ‘if you
need anything don't hesitate to call me’ which often makes the speaker feel
virtuous, but leaves the recipient
unfulfilled and unlikely to take up your offer believing,
possibly correctly, that it is not meant.
bereaved person says ‘I miss him/her so much’ a reasonable response could be
‘what do you miss most about him/her?’ allowing the person the opportunity to
talk about their loss rather than trying to change the subject.
jolly them along with comments such as ‘but you have two lovely children/grandchildren
to take your mind off him/her’ is not helpful.It may make you feel better because you have said something to ‘cheer
them up’ but you will not be helping them at all.
did this happen to me?’ type of unanswerable questions thatmany professional and non professional carers
fear,can be answered with ‘I wish I
knew the answer’ or ‘I wish I knew what to say that would help’
that is not essential to have an endless supply of wise words. The person you
are with needs
to know that you care and that you want to be supportive. It is not necessary
to have a brilliant philosophical response.
importance lies in being there and being able and willing to really listen, giving
that person your whole attention.
To truly give
someone your full attention without interrupting them is a gift, and if you can
listen without giving them your unsolicited advice, your experiences, or what
your neighbour did in similar circumstances, it is a rare gift indeed.
It may still be a lottery postcode as to
whether we get the support we need to stay at home at the end of our lives, but we do have some control over the kind of
treatment we receive – or to be more precise - choose not to receive.
Euthanasia and assisted suicideare against the law, but thanks to the Mental
Capacity Act of 2007 we can chose to write a Living Will. A Living Will (also known as an Advance Directive
) allows us to state what treatment we want to refuse even if refusing it will bring
about the end of our lives.
It is important to think in advance about the decisions
you would like to make if you do not have the 'capacity' at that time to do so. Would you want to be kept alive artificially, or have every effort made to resuscitate you?
We can make our
end of life choices in two different ways:
We can eitherappoint someone to have our Lasting Power of Attorney allowing them to
make decisions about our end of life treatment when we are no longer able
to.Alternatively as stated above we can
write it down, but its no good putting it with your Will which will only be read after you are no longer alive, it must be accessible, so make sure your GP and family have a copy.
You may not be
able chose where you spend your last days - but atleast you may have some control over how.
’Nurses who fail to demonstrate compassionate care are
betraying the values of their profession’, according to the Chief Nursing Officer
Compassionate is not a verb. You can’t order a nurse to
be compassionate. Compassion is a reaction to seeing someone who is vulnerable,
suffering, unable to help themselves. A compassionate response would be a
desire to help them.
But no directive is going to make that happen.
In 2001 we had the Department of Health’sSocial Care Institute for Excellence which
intended to improve social care in England. The word excellence of course made
their results excellent. Not.
We also had the Dignity
in Care campaign launched by the Department of Health in 2006. Well, that
worked well! Now we have The Royal College of Nursing telling the nurses to be
compassionate. They think that by using more meaningful words they will deliver
more meaningful care.
Every year seems to be anotheryear of magical thinking.
According to the
Royal College of Nursing Since the coalition came to power in May 2010, the NHSworkforce in England has decreased by
28,500 posts, and a further 32,700 jobs are at risk.
There seems to be a belief that it is possible to ignore the
reduction in staffing levels, the increase
in bed occupancy, and the loomingexplosion of our ageing population heading
towards the end of their lives, and that it will be enough to periodically sprinkle a few flowery adjectives to describe
the new model of care, and hey presto the care will improve as if by magic.
The reality is that the par between the real and the
intended care just gets bigger and
bigger, and the Government’s Department of Health and the Royal College of Nursing’s
mission statements look more and more like a feeblemarriage vow taken moments before the groom runs
off with the bridesmaid.
I find it quite strange that Saga magazine who target audience are over 50 years of age, do not publish anything on end of life or palliative care.
They believe their readers 'don't especially want to think about it until they have to'.They encourage their readers to say ‘if something happens to me’ rather than the preparation for the inevitable ‘when’.
They are letting their readers down by not considering the implication that lack of forward planning will have on their end of life, or the potential impact it will have on the family.
They advocate informed choice in all aspects of their lives and yet ignore the importance of informed choice at the end of their lives
Well the big news was that my book End of Life the Essential Guide to Caring was Highly Commended at the BMA Books Awards and also Highly Commended for the BMA Science Award for the Understanding of Science which surprised us somewhat. Apparently ‘This guide impressed the judges with its practical focus and sympathetic style’ anyway I’m not complaining!
I have been effectively out of work since the government cutbacks, its bad news for me but also for all the carers who are not getting the training and support they need when working with people with dementia and end of life.
Frustrating is an understatement.
In the meantime I qualified as a Bereavement Counsellor and am volunteering with Cruse Bereavement Charity.
Will also be writing another book. I'm back to blogging!
When we know someone is in distress our immediate reaction is to comfort them, perhaps to tell them that things will get better, it won't always feel this bad.
Often we try to 'fix' them, and ask them if they have thought about X, Y or Z.
However, if we really want to comfort someone who is distressed, we could allow ourselves to listen, without judgement, without trying to fix them, without looking for ways we feel they could improve their lives.
An empathetic ear is the greatest gift we can offer - and we have two to spare.
I set up ELManagement as an umbrella organisation for all non medical end of life care. I am very passionate about caring for people who are reaching the end of their life no matter what their age. I am a writer and trainer in end of life care, bereavement and loss and dementia care and I am also an Associate Trainer with a dementia specialist training company and Age UK. I believe in the power that supporting each other brings and the importance of doing whatever we can to give those who need it a quality of end of life.
I co authored End of Life the Essential Guide for Caring which was awarded a Highly Commended by the British Medical Association and the runner up prize for the Public Understanding of Science in 2011. I have also been the studio guest of BBC radio Surrey and Sussex and have co authored two articles that have been published.
A second book about life after bereavement will be published in June 2013