By Ed Wilson*
December 2017, standing in a crowded hospital ward, surrounded by hospital beds, sick people and the hustle and bustle of staff and visitors coming, yet I feel very alone. I stood staring at my grandfather who is now a shadow of the former man I knew. Sat in an armchair, breathing short heavy breaths, no energy to even smile let alone have a conversation. I knew a hard conversation was coming.
It was on this day that the consultant was coming to visit my grandfather to discuss ‘the next steps’. I knew this was not good. I offered to accompany my father and aunty (my grandfather’s children) as I knew this would be a difficult time for them and they would probably struggle to think of appropriate questions. I was also aware that there were discussions on where my grandfather’s dying days would be seen out and I wanted to be sure that my grandfather’s wishes were honoured and that the best possible care was secured.
There were lots of awkward silences, glances between each other, uncomfortable small talk. All of us looking at the man sat in front us, dying. Not knowing what to say. It was clear my grandfather was very much aware of this now too. He didn’t need to speak.
Slipping into ‘work mode’ was easy
It is a funny thing when you have been in these situations as a professional so many times, comforting family members and those experiencing it and you seem to find the right words and strength to speak to them. In these situations, you fear less the difficult discussion of their end of life wishes and the care they could and should be receiving. However, the power of emotion and attachment cannot be underestimated, and I did underestimate it when I agreed to attend on this difficult day. However, I told myself I had a job to do and I was being relied upon by my father and wider family to be supportive, ask the right questions and get the best outcome for my grandfather.
I bit back the upset, the anger at being in such a situation and ‘got to work’. In that moment I found it easy to slip back in to ‘work’ mode, putting an imaginary screen up that this was not my grandfather and began talking about his wishes for where he would like to be and how he would like to be cared for in the last looming days. My grandfather had clearly been thinking about this and his response was quick, simple and easily understood… “I don’t care, I just can’t be in here”.
It felt like my heart was exploding, I needed help to move forward in the conversation but as I took stock of who was around me, I felt very alone. Once again, I bit back the emotion, took a deep breath and continued to conversation.
There was no more conversation, my grandfather did not care where was chosen for his last days and did not want to make this decision but remained firm and clear that it must not be in the hospital. The firm tone in his voice flashed me back to childhood. My grandfather was the man who never told you off for being silly or naughty, but when he spoke in his deep, firm tone you knew fine well to stop whatever you were doing – you had gone too far. Within this broken, scared old man sat in front of me, my grandfather remained, and I still listened to him and knew he summoned the strength from somewhere to assert his authority, perhaps for one final time.
‘Do they know my grandfather is dying?’
We were visited by the first hospital staff, the ‘discharge liaison nurse’. She introduced herself to our family and without pausing she flew into explaining her job was to facilitate discharge and explained that she had made some enquiries into nursing homes for my grandfather and that they had applied for ‘Fast Track Funding’ for my grandfather. I stood, listened, amazed at the lack of empathy and realised that they too were in ‘work’ mode, detached emotionally from the situation and reeling off their usual speech to families.
I loathed them at this time for being so lucky at being able to detach themselves from a highly emotional situation. I stood wondering; do they know my grandfather is dying? I looked at my father and aunt, they looked at me in return with an expectant look on their faces. I knew instantly they did not intend on engaging with this conversation and expected me to take the lead… so I did with a large and heavy sigh.
I needed to find more strength to have a meaningful conversation about my grandfather’s dying days.
It was with success that I managed to explain our current situation, that we were waiting to meet with the consultant and that we had not yet had the conversation that my grandfather needs to find a place to die. I also explained that I wished to explore a hospice route for my grandfather but if this was not possible then I would be picking which nursing homes to look round as the ones they were suggesting had bad reputations.
It was at this point I saw the discharge liaison nurse change in her presentation. The frosty appearance changed, she became friendly and more understanding – a mutual understanding that I ‘was in the profession’. I also saw the realisation on her face that without overtly saying ‘we haven’t been told my grandfather is at the end of life’, she understood this is what I was saying. I imagined she saw three lost people stood in front of her, waiting for ‘the talk’ with the consultant. She left us, understanding, but with more questions building.
Finally, the consultant arrived, he greeted my grandfather first and then my father. I was introduced along with my aunt. My dad clearly had a good rapport with the man who was making decisions about my grandfather’s final days, so I left him to do the talking. Standing back, watching the scene play out was like an out of body experience looking in on an intimate family moment. The tactic to stand back didn’t work, I was brought back down to earth with a bump as an expectant glare turned to me again, following the “any questions?” comment from the consultant. Silence. Expectant look at me. Again.
I kept the professional exterior they needed from me until I reached the safety of my own car and my own home and then returned to grieving grandson
The strength to talk was becoming less and less. My head spinning faster with the more in depth we talked about my grandfather’s dying days.
I mention dying days…. This is what was sounding in my mind throughout.
The remainder of the time at the hospital was largely spent in silence, the car journey home was spent in silence and we all went our separate ways, processing what has happened today in our own way. All considering the length of time my grandfather had and wondering ‘how long the piece of string’ could be in response to how long we have left with him.
On reflection, I never shared the emotional turmoil of this day or the impact it had on me with my family. I did not let them see the anguish that was going on inside my head but most painfully inside my heart. I kept the professional exterior they needed from me until I reached the safety of my own car and my own home and then returned to grieving grandson.
I cannot help but feel a pang of anger towards my family for the responsibility that was placed upon me that day, but I always remember I did this for my grandfather. I chose to attend and support, and I did what my grandfather needed me to do and I feel proud. The feelings then turn to grief and loss alongside remembrance of a man who played such a big role in my life.
As a professional, you should never underestimate the power of emotion – do not be blinded by your knowledge and skills. It is not the same when dealing with your own family, you cannot be the professional you are when at work. You need the support of professionals, your family and the importance of self-care is never so evident than in these situations.
My grandfather died in the following days and the last visit was hard, but I knew there was still a job to do. He left behind a wife – my grandmother – who has progressive dementia, living alone and in need of the care and support of her family to ensure she remained safe and happy. I knew this turmoil would be repeated and all too soon. My parting words of comfort to him “we will look after her”.
*Ed Wilson is a social worker in Yorkshire with over seven years’ experience in statutory social work. His name has been changed.