What to say when you don't know what to say

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?’ 

Everyone it seems is afraid of saying the wrong thing, and the more tragic the loss the greater our fear.

 

So why is it so hard for us to know what to say when someone has been bereaved?

Is it 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.

Because we 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. 

Sometimes all 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.  

Practical 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. 

If the 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.  

Trying to 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.  

The ‘why did this happen to me?’ type of unanswerable questions that  many 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’  

The point is 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.

The 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.

 

 

End of Life Choices

According to The Guardian, ‘research shows that 70% of adults would like to be cared for and die in their own home. But great majority of us still die in hospital; today, two out of 10 are able to fulfil this final wish. . http://www.guardian.co.uk/local-government-network/2012/dec/10/good-death-local-government-end-of-life-care

 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 suicide  are 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 legally binding and providing it is relevant to your circumstances at the time it cannot be overturned. http://www.ageuk.org.uk/money-matters/legal-issues/living-wills/

 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 either  appoint 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 at  least you may have some control over how.

 

 

 

Buzz words don't lead to better care

’Nurses who fail to demonstrate compassionate care are betraying the values of their profession’, according to the Chief Nursing Officer for England’

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’s  Social 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 another  year of magical thinking.

 According to the Royal College of Nursing Since the coalition came to power in May 2010, the NHS workforce in England has decreased by 28,500 posts, and a further 32,700 jobs are at risk.

The number of qualified nurses working for the health service reduced by more than 6,000.( http://www.channel4.com/news/nurses-must-deliver-compassionate-care)

There seems to be a belief that it is possible to  ignore  the reduction in  staffing levels, the increase in bed occupancy, and  the looming  explosion 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 feeble  marriage vow taken moments before the groom runs off with the bridesmaid.

 

Saga Magazine are letting their readers down!

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

BMA Awards for my book End of Life the Essential Guide to Caring

 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!

Watch this space!

We always try to comfort those in distress

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.

A passion for life and living - can keep you alive and living!

I have just returned from a short holiday in a warmer climate.

 There I met a man who has cancer and was given six months to live - seven years ago.

He said when he was told he only  had months to live he went to the beach every day and cried.

After a while he decided that  instead of crying in the sea he would start to swim in  it  and he would swim out so far  that  maybe he wouldn't be able to come back.

Instead of that he found a passion - for the sea and for swimming.

For the last seven  years he has  spent hours swimming whenever the sea conditions permit -  and he makes sure that he is able to get back to the shore.

His passion has not only fuelled his desire to live but it has given him a quality of life he never knew before.

Without a passion we are living. But are we really alive?