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

32 thoughts on “Surviving the Long Trek by Fraser Gibb

      • What a challenge to try to imagine the utter helplessness you sometimes feel during this. The glimmer of a response with the surge of hope, then that hope being confounded and replaced by the urge that your loved one be freed from the distress. Conflicting objectives of recovery vs release; and the stark realisation that what you are considering may be no more than a prolongation of a difficult death (active treatment) , or it may be the removal of a chance to keep the person with us (full palliative care). Add in extreme sleep deprivation, mix it with grief, sprinkle in your own need to keep the person with you, and season with your guilt at having ambivilant thoughts that swing from the opportunities that there will be to get your life back when the person is gone, to the sadness that I’ll never cut his hair again.

        How can any course teach a person how that feels?

        It’s a right rum do!

  1. Fraser thank you for writing this blog and for being so honest, practical and inspirational about your experience with your Dad. So much of what you mention reminds me of my own Mum and Dads passing particularly the part about tolerance towards another family member and pacing yourself. I admire your compassion towards others at this time .
    Penny Halliday

    • Thanks Penny.
      While there have been frustrating bumps along the journey through this admission, my main experience has been that of kindness and care. We have received some truly exceptional examples of human kindness during this journey, and these far outshine the occasional frustration.

  2. Very thoughtful Fraser, and very brave. I hope this helps you and the family as you go through this. Having been through similar, your thoughts certainly remind me of the challenges and they remind me of some of the good aspects of how we managed in my family. Death is never going to be good, but it is inevitable, and the task is to make it as gentle and fair an ending as possible. And remember that the difficult memories of the last days will be balanced with the better memories of past good times, slowly slowly. Take care.

    • Thanks Nick.
      The tipping point, where the joy of having known is greater than the pain of having lost, is a concept I have faith in. I’m sure it’s not quite as easy as that, and the pain of loss is certainly a ‘lumpy’ thing that will creep up at unwelcome times.
      The kindness of these comments is a great comfort.
      F

  3. Thanks for this Fraser, and best wishes on this challenging journey. My mother-in -law died almost a year ago so this time last year we were where you are. We were lucky in that she was able to spend her last days in the local hospice where my partner used to work – it felt very safe and calm and supportive compared to her brief, quite chaotic, and for her very scary, stay in hospital prior to that.
    Your words resonate a lot and I thank you for sharing your experiences and feelings.

    • Thanks Sandra.
      Thanks for sharing your experiences with your mother in law’s last days. I’m glad she got some relief at the end of her illness.
      My dad’s journey is ongoing. Each day brings a different set of difficulties, and our goals have had to be revised on a daily, and sometimes more frequent basis. At the moment it’s how to manage his overwhelming thirst during his brief moments of lucidity. He can’t swallow now, and aspirates on even to smallest drops of water.
      I just want him to have a peaceful passage.

  4. Thank you. I remember my own Dad’s last days very well. The Consultant looking after him seemed to lack compassion and as a family we did not warm to him. This is a very difficult time for anyone and I remember telling him that as a Nurse, this experience is very different when you’re ‘on the other side’ as you’re experiencing. I remember him considering this and then acknowledging that this might be the case. I hope he took something from that.

    However difficult this time is it’s a chance to spend time with your loved one and do everything you can as you say, to make the journey as peaceful as possible. Thank you again for your blog, I think it will touch the hearts of many and be a useful source of support for anyone else going through this.

    I always like to think that those we have lost continue to live on in those they have loved.

    Veronica Gilby

    • Thanks Veronica.
      You are right that this is both an almost unbearable burden and a privilege.
      In our case we were suddenly flung into a palliative stage, and we didn’t think we would ever hear my dad speak again. And then he rallied for a day or two, and simple conversation became possible. He’s once again unable to speak, but we’ve had a couple of brief interludes where he is awake and aooears able to understand us. During those times we’ve been able to tell him how precious he is to us all. I hope he can understand. I am working with the assumption that he can.

      We have had one truly positive thing from this. My comment about not breaking of the family over this was based on my own feelings about how differently we were all approaching things, and the frustration that we were feeling within the relatives’ group in relation to the others.
      That has completely disappeared, and the 4 of us that are waiting this out have coalesced into a strong and mutually supportive unit.
      Hopefully this new family unity will be a fitting legacy to my dad. I know that he would want nothing more than that.

    • What a challenge to try to imagine the utter helplessness you sometimes feel during this. The glimmer of a response with the surge of hope, then that hope being confounded and replaced by the urge that your loved one be freed from the distress. Conflicting objectives of recovery vs release; and the stark realisation that what you are considering may be no more than a prolongation of a difficult death (active treatment) , or it may be the removal of a chance to keep the person with us (full palliative care). Add in extreme sleep deprivation, mix it with grief, sprinkle in your own need to keep the person with you, and season with your guilt at having ambivilant thoughts that swing from the opportunities that there will be to get your life back when the person is gone, to the sadness that I’ll never cut his hair again.

      How can any course teach a person how that feels?

      It’s a right rum do!

  5. Dear Fraser,

    Thank-you firstly for sharing your experience and thoughts. I think your opening paragraph is so true, how something feels versus how we think it is going to be from observations and involvement ‘on the other side.’ I can hear and feel the self-compassion and kindness in points 7 and 8 – the description of a ‘trek through the jungle’ is so apt -full of unfamiliar and unexpected corners. .

    Take good care of yourself Fraser, and when you start to feel overwhelmed, remember your own wisdom -particularly points 7 and 8. My thoughts go out to you and your family at this time and may your dad find peace on the other side of his battle. I send you a hug.

    My kindest regards

    , Gill Stanyard

    • Thank you so much for you comments Gill.
      Your hug is most gratefully received, I hope you don’t mind me sharing it amongst the family!
      Dad’s comfortable and quietly sleeping at the moment.
      Fraser

  6. Dear Fraser

    Our family are currently going through the same experience as you and your family, albeit with our mum. At times, we as a family, still cannot get our heads around the fact that mum’s time is limited. Her mind is strong, but it’s her body that’s letting her down. She has end stage chronic heart failure. Sometimes I think we as a family, are in denial. The experience can only be described as surreal. You blog is so inspiring and such a brave thing for you to share and has certainly given me the strength to deal with what is to come.

    Can I also thank you on behalf of our family, for you patience, understanding, compassion and kindness when you were the OOH’s doctor who visited mum a couple of weeks ago, even though you were in a similar situation with your dad. It’s was greatly appreciated.

    Thanks again for sharing your thoughts.

    Take care.

    Janie Candlish

    • Wow!
      Thanks Jane.
      I’m sorry to hear about your own difficult times. I would like to say that you should follow my example and it will be okay. But in fact I’m a blubbering wreck much of the time, and I’m only just managing.

      If I have been able to help with your mum in my own contact with her, then I feel honoured and privileged.

      Best

  7. Thoughts are with you and your family Fraser, I can really relate to all you say from when I lost my mum last year, it was only then that so realised the true meaning of the word grief. Take care and thanks for writing this x

  8. Thinking of you . It is such a sad time. I will never ever forget what you did for my dad and myself during the few months my dad was under your expert care . As you said looking at it from the other side of the fence . I can totally understand what you mean by this . As an nhs worker I felt the same .

  9. Thank you for this Fraser- good advice so be sure to follow it- and look after yourself as best you can under the circumstances
    All best wishes
    David

    • Thanks David.
      It’s funny, but I have actually thought about these points quite frequently during the process until, and subsequent to, my father’s death.
      Having written them down sort of cemented them, and made them ‘mine’. In particular, the points about managing frustrations about care, and being kind to myself.

      My dad died peacefully on Sunday morning at 05:32. His difficult journey is now over.
      This was a challenging time for all the family, but there have been some good things that have come out of it- in particular a sense of unity around my mum.
      If that is his legacy, then I am sure he would have wished for nothing more.

      • Fraser, I am sorry for you and your family – 05.32 takes on a whole new life of its own -your dad’s battle merged into peace. There is something so comforting around that description of a ‘sense of unity’ for your mum. Please share the hug I sent you.

        Take very good care of your self

        Gill

  10. Thank you for sharing these most personal reflections at such a difficult time for you. The points you make are so valid and poignant.

    I lost my dad to dementia 9 years ago and yet it was only a couple of weeks ago when the full force of my grief hit me. I realised that all my coping had been because I went into nurse and eldest daughter mode. I never allowed myself to grieve as a daughter.

    I’m pleased you are able to spend this time with your dad and allow yourself to be a loving son who is losing someone so dear.
    With best wishes
    Elaine

    • Thanks very much for your comments Elaine.
      We that remain have all been surprised by how calm and settled each of us has felt following my father’s passing. In the lead-up to his death there was a raw emotionality evident as we struggled to come to terms with what was happening, and battled with conflicting drives-
      the need to manage his discomfort; and the wish to give him a chance of recovery. From a personal point of view, I had questions about his diagnosis and treatment that I couldn’t resolve. I felt helpless at times.
      Now that he has died, those urgent needs have passed. We are now caught up in the more practical tasks of arranging a funeral, notifying people, changing policies to my mum’s name, settling his estate- and playing lots of Scrabble! This activity has captured our focus, and I hope will cushion us from the raw grief for a while.
      I think that, once the dust has settled, there may be a delayed response, where I try to piece together what happened- and when the reality of his absence strikes home.
      We still have mum, and she needs looking out for, so that’s a further focus for us.

      I hope that it’s not nine years before the true grief reaction happens for us. Your comments about how your own professional role may have shielded you from the grief by making you task focused is certainly something that I could be guilty of.

      I hope that your own grief at the loss of your dad resolves in a positive way Elaine. You sound like you provided him with the dual roles of loving daughter, who was so desperate not to lose her father; and a care professional advocate, who worked hard to ensure that the nursing and medical treatment went as well as it could. Those are noble roles, but at times can be at odds with each other.
      I wish you all the very best.

  11. Fraser, thank you for sharing such a personal time. I wish your whole family, especially your dad, peace. I am sure you will look back in joy and remember great times and appreciate that you have had this precious time to say goodbye

    • Thanks Alice.
      We met the minister yesterday evening, and told him a bit about dad’s life. What a lot he did! And how he did it in his own way, and without compromising who he was! It was remarkable to go through his life’s achievements, and realise what a special man he was. Each of the family contributed their little bit of the jigsaw. I think that that conversation helped the healing a bit.
      We already got a small glimpse of that joy of remembrance that you mention yesterday evening.
      Thanks again Alice.

  12. I’m so sorry for your loss Fraser. I have followed your blog throughout with a mixture of emotions, as much of what you were and are going through resonates with me as I’m sure it does with many. Thank you for sharing your thoughts and experiences.

    Talking about your Dad is the best thing you can do, he sounds like he was very special and I hope you can now go on to remember all those special things he did and the wonderful moments you shared as father and son.

    Best wishes to you and your family.

  13. What a brilliantly written and moving blog Dr gibb, with sound and wise advice. These situations are always difficult emotionally. For the patient, their loved ones and often for staff as well, as e.g situations bring back memories of bereavement in our own lives. My best wishes to you.

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