The Importance of Trust

Recently I read about the death of 89 year-old dementia sufferer Gordon Penfold who died whilst in the care of Charnwood Oaks Care Home.  In the enquiry following his death the coroner criticised the home for failing to respond to his falling weight, making no real attempts to arrange for support from his GP or a dietitian.  His family felt terribly let down as they had trusted the home to care for their father who couldn’t communicate himself. Although they had visited regularly, given that he was bed-ridden, I imagine his weight loss had become severe before they registered it.  At that point they had insisted on a visit from a medical practitioner, but by then Gordon was too poorly to recover.

This was followed two days later by a programme on BBC Radio 4 about the impact on the Hyde surgery and its patients of GP Harold Shipman’s terrible series of murders.  The current GP spoke with feeling about the loss of trust in the practice and the lengths he had gone to rebuild this trust.  These two articles coming together made me ponder on the huge importance of the trust we place in those who care for us and for our loved ones.

Unless someone is still living at home with their carers it is likely that s/he will be left alone for quite lengthy periods. Medical staff  may monitor them and family and friends will visit but we are very dependent on professional carers to maintain a proper standard of care. When I think of my fears about dying I find it can centre on how safe I will feel in the care of a nursing home who may have tens, if not hundreds of other residents many of whom may be in the same state as me.  What if I’m not able to communicate with the staff or tell my visitors to speak up for me?  I remember a friend’s mother visiting her husband every day at his care home because she knew that they would often just put his food in front of him or fail to realise he needed the commode. Suffering from severe dementia he often couldn’t feed himself and she couldn’t bear the thought of not being with him at mealtimes long after he no longer recognised her. In essence, she did not trust the nursing home to care for him.

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It makes me sad to think of all the people who have no one to look out for them, to check they are not being neglected or even abused.  The level of trust we need to place in those who look after the dying is pivotal to a good death but I wonder if we have enough checks and balances in place to ensure it is to the standard we want?  Maybe the worry that this trust might be misplaced is what keeps elderly couples living in extreme difficulty caring for each other rather than “going into a home”.  After all, if we can’t trust a GP who makes a home visit to an elderly person who can we trust?

If I could have one more hour with you.

In The Guardian yesterday there was an article by Tom Connolly “We got it right.  We’ve been good brothers”.  It is a very moving account of his close relationship with his older brother, Pip who died at the age of 50 in 2010.  Tom has realised that this year he reaches an age whereby he will be older than the last time he saw his brother.  Having spent his whole life looking up to his brother and taking his advice on everything, he feels that he is entering unknown territory – how can he experience an age his brother never did? Who will tell him how to handle what life might throw at him.

Tom misses his brother terribly and he remembers a very moving moment they shared together when Pip knew he was dying.  They held each other and reiterated their love for each other.  Tom told his brother that he didn’t want Pip to die and couldn’t imagine life without him. Pip admitted that he could never have watched his little brother die and was relieved that it was this way around. They had the opportunity to say many of the things we never get around to saying to each other – always thinking that there will be time for that.

I remember when my brother was seriously ill in a London hospital and everything looked pretty hopeless.  I remember travelling there from Bristol and knowing that I had to tell him I loved him.  Coming from a family which wasn’t big on saying what we feel, I knew I had to overcome my reluctance because I might never have this opportunity again and I would forever regret not doing so.  In fact, when I saw him lying in his hospital bed, so close to death, the words came easily.  My brother recovered miraculously but I never regret that moment we shared in the private hospital room. Whatever happens in the future my brother knows that I love him.

Tom Connolly misses his brother so much that he has fantasised that somehow he will see his brother on his birthday and this led him to think about what he would say if he could have one more hour with his Pip. Thinking back to that conversation they had, Tom is lucky to realise that he doesn’t have anything unsaid that he needs to resolve with Pip.  He would just like to look at him, hold him and walk with him.  And perhaps to tell him one more time how much he is loved.

Rage, rage against the dying of the light

I was recently reading an article about the Australian writer Cory Taylor and her book, Dying: A Memoir.  In it the writer of the article, Alice O’Keeffe asked what we should do if we don’t have the consolation of a religious belief about the after life.  She wrote that:

“The rest of us need to know how to go about dying with some dignity and grace…”.  

Now this sentence struck a real element of discord with me.  Why do we have to aspire to die with dignity and grace?  This reminded me of the women who are held up as marvellous examples because they went through childbirth without a murmur or breaking a sweat whilst the rest of us puffed and farted and screamed our way through it.  Why does death have to be “dignified“?  I feel that this pressure to be calm, unemotional and serene through major events is so sterile.  What’s wrong with a bit of passion and expression when we are undergoing life’s big events?  My worry is that the need to be serene may preclude a dying person’s opportunity to be happy as well as sad: to be laughing and crying.

Dylan Thomas wrote his great poem Do Not Go Gentle Into That Good Night to say that it’s OK to be angry – it’s OK to rage at the end of your life and express your desire to stay a little longer.  Maybe having a bit of a rant will be cathartic and help you move towards accepting what is inevitable.

“Though wise men at their end know dark is right,

 Because their words had forked no lightning they

 Do not go gentle into that good night.”

 

 

Remembering the fallen

On the eleventh hour of the eleven day of the eleventh month of 1918 the Great War ended and this date and time have henceforth been dedicated to an annual tribute to those who have died as a result of warfare.  On Friday a moving tribute was displayed in the centre of Bristol and I went to see it before the crowds arrived.

The artist, Rob Heard has individually wrapped 19,240 small figures in hand-stitched shrouds to commemorate the number of people killed in the first day of the battle of the Somme.

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Individual figures

It was a quiet but sunny morning and the atmosphere at College Green was sombre.  Inside the marquee was a display of all the names of those dead represented by the figures laid out side by side.  It is shocking to think of so many lives being wiped out in such a short period.  The photos of the brave young men in their uniforms ready to go to fight to defend their country were particularly poignant.  Both my father (in the 2nd World War) and my grandfather (for the cavalry in the Boer War) survived these awful wars and it saddens me to think what they went through and what they may have witnessed.  In fact, my mother’s first fiance was killed in the first weeks of the 2nd World War so these deaths changed lives everywhere.  Whilst soldiers were encouraged to write final letters in case they didn’t survive I hope that most of them didn’t worry that death might not be instant for themselves or their comrades.

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My dad in his uniform

Most of us should consider how fortunate we are to have the time to talk to our friends and families about a death that may well not be soon or violent.  We should grab these opportunities in both hands and be forever grateful that we are not facing a frightening and messy death on a battlefield far away.

“…life has very little meaning without love.” – Leonard Cohen

In a New York Post interview published this week the poet, singer-songwriter and novelist Leonard Cohen, 82 said ” I am ready to die. I hope it’s not too uncomfortable. That’s about it for me.” He is about to release his latest album but he seems to think that his business with this life is over. He appears to be a man who lives alone despite long relationships in the past, mostly notably with Marianne Ihlen who died in July 2016.  Although they had not been together for decades they were still close and he wrote a letter to her in the last days of her life which said:

“Well Marianne it’s come to this time when we are really so old and our bodies are falling apart and I think I will follow you very soon. Know that I am so close behind you that if you stretch out your hand, I think you can reach mine… I just want to wish you a very good journey. Goodbye old friend. Endless love, see you down the road.”

– Leonard Cohen

As we grow older the death of those around us becomes ever more relevant. Many older people grow isolated because their siblings, friends and partners have already passed away. As each one leaves us maybe one of the side effects is that it loosens our ties with life and helps us to feel ready to go.

The Marie Curie Helper Service offers a valuable service providing companionship and support for isolated people at the end of their lives.  And I have seen firsthand how easy it is for people to suddenly realise they have no one close to them to help them through the final weeks of life: it can be a very lonely time. Maybe Leonard Cohen has realised that he doesn’t want to be “the last person standing” and so is ready to go now.  It seems an awful shame but maybe he feels he has no one left to love or be loved by. And life has very little meaning without love.

When a child learns about death

On 21st October 2016 it will be the 50th anniversary of the Aberfan disaster.  I was 11 years old when it happened and I have never forgotten it.  For many of us, the realisation that death happens is often when a member of the family dies or maybe a beloved pet passes away.  For me, it was when I saw this disaster on the television.

For those who don’t know, this was the terrible day that a “slack heap” collapsed and buried a village school.  I knew what slack was as it was what we added to our open coal fire to slow it down – basically small crumbs of coal that came in the bag with the large pieces but which couldn’t be sold on their own.  So a slack heap was where the spoils from the coal mine were piled up – rock, shale and lots of coal dust. For convenience this particular heap at Aberfan was close to the village and over time a build up of water caused this huge pile of waste to become unstable until it suddenly started to slide downhill in an almost volcanic stream of cold, wet slurry. Lying in its path was the village school.

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The slide moved at such a pace that nearby workers couldn’t have raised the alarm even if their phone cable hadn’t been stolen earlier.  40,000 cubic feet of debris travelled at  a depth of 12 metres and engulfed the Pantglas Junior School and part of the adjoining senior school.  It was the last day of half term: an hour earlier or a day later, the children wouldn’t have been there.

For me, this hit me on all fronts.  My father had come from a welsh mining family and had gone down the mines at 14 – if he had stayed in Wales this could have been us.  116 children and 28 adults died: children just sitting in their classrooms like I did every day.  And coal, that innocuous benign substance had done this.  Not a bomb or an earthquake: coal which we used every day.  It made the whole thing so close to me.  The “bungling ineptitude” (The Davies Enquiry) that resulted in this disaster meant nothing to me as I was too young to understand culpability and blame but rather it brought home to me that death comes stalking at any time.  My innocence about death was gone.

Can you remember when you first became aware of death? How did you feel about it?  I’d love to read your experiences.