Surviving the Long Trek by Fraser Gibb

I’m currently off on compassionate leave as my dad battles through what are probably his final days.
The palliative care journey has been overwhelming for me. It feels unimaginably different from anything I could have anticipated from years of looking at it from the other side of the fence.

So I put my thoughts down in the following Facebook post.

What I’ve learned during my crash course on imminent bereavement. 

My toolkit for surviving your loved one being gravely unwell.

1. Do what you can to stop them from feeling a) pain b) anxiety c) discomfort (itch, nausea, dizziness, or anything else). Remember that you can only do so much. There are things that will happen that you will disagree with. Make whatever effort is reasonable to have your opinion heard. Once you have expressed your opinion and heard the response, consider,
a. Is the response going to manage the problem?
b. If not, is there anything reasonable that I can do to change things for the better?
c. Remember that, despite what is happening to you and your loved one, there may be someone else in the ward that is going through the same thing. The nurses are human, and they make mistakes. That doesn’t mean that they don’t care, or are not trying.

2. Enjoy every moment of connection.
This may be no more than a glimmer of a smile, or the tiniest squeeze of a hand. It may feel like nothing to anybody else, but it is a thing to you; it may be a thing for your loved one; and it may be the last moment to remember that you ever have with her.

3. Take pictures. Record video.
It feels morbid. But it’s precious. Anything that you catch of your loved one before they go. Anything.

4. Talk as if the person is there.
Talk to each other. Talk about anything. Don’t stop communicating because there’s a palliative person in the room, but talk about things with the person in mind. Feel free to involve them as a silent member of your conversation.

5. Say those things.
The “I never got to tell him before he went” sort of things.
Tell him you love him. Explain that he’s adopted (if that feels right to you).
Whatever. Don’t let the person die without you having an opportunity to set the record straight. Even a silent witness can be a powerful one if they’re close enough to the incident in question.

6. Don’t break up with your family over this.
You may have an ‘odd’ brother or sister who doesn’t respond in the way you would have chosen. Don’t use this event as an opportunity to break up with your sibling. Chances are that they’re as wrecked by the event as you are. They may just be displaying their own distress differently. Your loved one would not want their own death to be an opportunity for schism within an otherwise functioning social unit.

7. Be kind to yourself.
You will not be able to be perfect. You will find yourself wishing you could have done some thing differently, or used other words. We are all human. Humans make mistakes. Forgive yourself.

8. Pace yourself.
This is a trek through a hostile jungle, not a stroll to the shops. It might take days and days. Work out a rota, and bring in some help. Everybody cannot be there for all the time. You need sleep. You need breaks. Don’t burn yourself out at the beginning, when the need may be much, much later.

9. There’s no such thing as a perfect death.
Things will go wrong. People will arrive at the wrong time, and events will happen when you aren’t there to manage them. Some opportunities will be missed. The best we can hope for is as peaceful a passage as reasonable, where people try their best, and your loved one doesn’t suffer too much. If you manage to get that, then you have got a precious thing

Fraser Gibb is a Consultant Psychiatrist at NHS Dumfries and Galloway

Absent Friends and Full Beam Living by Gill Stanyard

Just like the crimson poppy helps us to remember the fallen ones through War on Armistice Day, a couple of weeks ago,  it was the  Absent Friends Festival (1-7th November). It was created as an opportunity for people across Scotland to remember and share stories of ‘absent friends.’  A wall of remembrance was launched, as part of the festival, where you can post online tributes -here are just  a few that I read this morning:

 

To three dear colleagues who worked tirelessly to improve the end of life   experience of others, all to die of cancer too soon

 

    To Gordon, the garden volunteer .Just to say your recycled strawberry planters are working really well and we still miss you – a lot

 

   You told me you were dying but I didn’t want to believe it. I’m sorry I didn’t talk to you about it when I had the chance. I miss you so

 

 

I wrote the following for Robert Allan,a  fellow Board Member and my colleague who died suddenly in September:

 

 Robert, sorry I did not see you again after you went away on holiday. I will miss sharing your blueberries and all the banter and laughs we had. XX

 

He died whilst abroad with his partner and friends.  I cried when the news was delivered, on an early sun-filled Monday afternoon, in the Boardroom.  It was more out of shock initially and then I felt my sadness rising. I had sent Robert a text  just that morning, as I had not heard from him for a little while.  It was not like him, he was usually quick at getting back in contact.  We had been joking together just before he left  to go on annual leave about his new ‘regime’ of 45 minutes on the exercise bike whilst watching  old episodes of M.A.S.H. I had messaged him to ask if he had got back ‘in the saddle’ after holiday time.  I loved watching M.A.S.H too, it felt good having something in common. We were both very different, yet we shared good banter, laughter and stories. I  particularly used to like hearing of his time served as a Policeman in the Met, down in London, in the late 70’s and 80’s. He said it was like being in ‘The Sweeny ‘at times.

Robert was a Board member for seven years and in that time he brought much  to improve the service and to increase patient safety through scrutiny, constructive criticism, and ensuring that the Board’s strategy met the needs of the people of Dumfries and Galloway.  Robert really embodied the  role of the ‘critical friend.’  He was a Champion of Health Inequalities and a great advocate of patient empowerment and self-management, particularly for people with disabilites. He was Secretary of D & G Voice – a vibrant and expanding disability movement, with influence in Dumfries and Galloway and also on a national and UK stage.

In a blog Robert wrote  back in April, he wrote of the many highly skilled and dedicated people of the NHS who’ .. do their best everyday.’  This can certainly be said of Robert,  who despite having multiple long term health conditions and mobility issues, he always did his best

He leaves a wife and two daughters behind. If you like, you can read his blog here: https://dghealth.wordpress.com/2017/04/26/life-in-the-nhs-a-personal-view-by-robert-allan/

 

Robert was not afraid to speak up and speak out -he never held back.  In one of the last emails he sent me, he wrote about the importance of speaking up without ‘fear or favour,’  he included a quote :  ‘All that is necessary for evil to flourish is for good men to do nothing.’ (For men include women nowadays.) (Sic)

 

That quote really got me thinking. And I am still thinking about it. To me, it is about  self-leadership and feeling safe.  Why would good people do nothing? What gets in the way of action? These days, there is no one leader. The cape of the heroic stand- alone leader, who would lead everyone out from the shadows and into the light, has been shredded. We are all leaders. The word leader comes from the Germanic word ‘leiten’ meaning to ‘light the way.’ This always gives me an image in my head of a lighthouse, with the bright beacon at the top.  I wonder how many of us feel like we are operating on full beam with our leadership?

 

I have crashed many times on my own rocks of faulty thinking,  believing that I had to wait until it felt ‘safe’ to speak out.  Experience as a whistleblower in a former job and being a Non-Executive has shown me that the opposite can be true. Speaking up makes the environment safe. I am sure that there are many of us sitting on the sidelines with valuable information, insights and experience, that only we know and can share. We are waiting for the invitation from perhaps our managers or colleagues, that is not going to come, as they don’t know we have this important information. When others speak up in meetings, disagree with a decision, point out errors or provide clarity, it is inspiring. When we do it, it  can be scary and  we can feel vulnerable. ‘Pssst -it feels the same for those inspirational ‘others.’  You are an asset. You are enough. What you know matters, it may not necessarily be about a specific job or issue, it might be about you being a carer or the time when you solved a problem that others were struggling with.When you authentically act in the service of others, the environment supports you.

 

Self-leadership is a ‘rendezvous with reality’ according to International Coach Lars Sudman …he urges us all to go looking for ‘feedback’ to enable ourselves to grow deeper in our self-awareness and  to reflect on our decisions and how we are framing issues. Asking for feedback can often result in tumbleweed city being unleashed.  Try it for yourself and see what response you get. Do you hear a faint whooshing noise?! People don’t always think the ‘truth’ is a good idea. However, we can give ourselves feedback, based on our own reading of a situation and how we felt we did. If you ask yourself now about the worst leader you have experienced, what did they do? Did they shout? Did they use shame as a way to gain compliance and control? Did they with-hold information? Now score yourself out of ten, for the same things. How good are you at sharing information with others, for example? Based on your scores, what is your plan to execute your leadership and make improvements?

 

Research at the University of California has shown just 2 -5  minutes a day of this can increase compassion for yourself and others, thus leading to better decisions and less stress.  Harry Kraemer, Professor of Strategy at the Kellogg school suggests this mini-reflective exercise could be the key. Ask yourself:  ‘What are my values, and what am I going to do about it?’ He writes “ This is not some intellectual exercise. It’s all about self-improvement, being self-aware, knowing myself, and getting better.”

 

This is nothing new, Marcus Aurelius, was a philosopher and Emperor of Rome from 161 -180 AD.  He was one of the most powerful men in the world and was described as a ’beacon of ‘leadership’. Every night he would  sit down and reflect on his day, and prepare for his tomorrow by asking  the question “I will encounter difficult people tomorrow, how will I react?” If you ask yourself now about the best leader you have experienced, what did they do? How did you feel in their presence? Now score yourself out of ten, for the same things. Based on your scores, what is your plan to execute your leadership and make improvements for your tomorrow?

 

Several years ago,  Bronnie Ware, a Palliative-care nurse from New South Wales in Australia captured the regrets of people who were dying, when she was with them in their final weeks of life. Ware wrote of the phenomenal clarity of vision that people gain at the end of their lives, and how we might learn from their wisdom. “When questioned about any regrets they had or anything they would do differently,” she says, “common themes surfaced again and again.

 

Here are the top 5:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
2. I wish I hadn’t worked so hard.
3. I wish I’d had the courage to express my feelings.
4. I wish I had stayed in touch with my friends.
5. I wish that I had let myself be happier.

If you reflect on these, what’s your greatest regret so far, and what will you set out to achieve or change before you die?

When others from the Board and I attended Robert’s memorial service,  I learnt lots of things I didn’t know, such as he loved the music of Leonard Cohen.

Here are the lyrics to ‘Dance me to the End of Love’ by the man himself. It is my wish that you enjoy your dance -and my wish for Robert that he is now safely inside his ‘tent of shelter.’

Dance me to your beauty with a burning violin

Dance me through the panic till I’m gathered safely in

Lift me like an olive branch and be my homeward dove

Dance me to the end of love

Dance me to the end of love

 

Oh, let me see your beauty when the witnesses are gone

Let me feel you moving like they do in Babylon

Show me slowly what I only know the limits of

Dance me to the end of love

Dance me to the end of love

 

Dance me to the wedding now, dance me on and on

Dance me very tenderly and dance me very long

We’re both of us beneath our love, we’re both of us above

Dance me to the end of love

Dance me to the end of love

 

Dance me to the children who are asking to be born

Dance me through the curtains that our kisses have outworn

Raise a tent of shelter now, though every thread is torn

Dance me to the end of love

 

Dance me to your beauty with a burning violin

Dance me through the panic till I’m gathered safely in

Touch me with your naked hand or touch me with your glove

Dance me to the end of love

Dance me to the end of love

Dance me to the end of love

L.Cohen     

                                   

If you would like to add your own tribute, to absent colleagues, or relatives you have lost, follow the link.  Sometimes we don’t get the chance to say the things we really wanted to.

https://www.toabsentfriends.org.uk/content/remembrance/

 Gill Stanyard is a Non Executive member of NHS Dumfires and Galloway Health Board