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  • Alise

End of Life and ‘dying well’

George was living at home with his partner Margaret. He was very frail and struggled with a range of physical health issues. It was a surprise then, when it was Margaret’s health that led to several weeks of acute medical events including hospital visits and two emergency care home placements.

When Margaret first went into hospital a few days before Christmas, George’s care agency stepped up, going above their usual maximum hours of support that day. When it became apparent that Margaret would not be returning home that evening nor the next, the agency manager herself agreed – in our desperate attempts to keep George at home where he was most comfortable – to stay overnight with George in their flat. Margaret came home for Christmas at her insistence but went almost immediately back into hospital a couple of days later having not had the rest she needed. And so, it became apparent that George needed to move into a Care Home on a respite placement, as Margaret’s condition was too serious to be cared for at home over the next couple of weeks, and no enhanced hospital discharge package was available at that time of year. Margaret was understandably devastated, but I believe the blow was softened somewhat by having me as George’s Care & Wellbeing Consultant, there for every moment along an extremely difficult journey.

It is worth noting that this was a balancing act: while it was George who was my client, his anxiety levels were very high whenever Margaret was not around (and indeed, vice versa). So, with Margaret’s wellbeing crucial to George’s, my role broadened into support for them both during this turbulent time.

I was frantically calling around every agency in town to try and cover George’s needs and then when that was no longer possible, finding a care home as local as possible, that could take George in as a respite resident. Furthermore, I was spending time with George and Margaret themselves, reassuring, facilitating calls to one another, and sharing photos of them both smiling and waving at each other. I’d be lying if I said I wasn’t extremely worried about the health and welfare of both George and Margaret during those weeks, but my role was very much one of calm mediation, reassurance and comfort. Always making sure that George knew Margaret was ok, and Margaret knew George was ok, and that everything in our powers was being done to ensure that they would be reunited as soon as humanly possible; whilst delicately trying to manage expectations, given the reality of the situation.

We were able to reunite them at home for a brief period, before Margaret’s health failed once again. Given what had gone before, I decided it was time to hold a Best Interests Meeting. George’s Attorney, the hospital staff and the domiciliary care manager all agreed that as much as we all wanted George to stay at home – and Margaret most of all – it was not fair for him to keep having to move at a moment’s notice into respite care, every time Margaret’s health declined, as was predicted. The conversation I subsequently had with Margaret was one of the hardest of my career. She desperately wanted George to stay at home so that he would be there whenever she was discharged, but we could not provide the package he needed given his level of nursing care needs, which were quickly increasing. Let’s not forget, George himself was extremely frail and vulnerable!

Eventually, we came to a decision: both Margaret and George would move together into a couple’s room in a nursing home, where both their needs could be properly met. Margaret remained extremely reluctant, but at least it meant that they could stay together.

Margaret and George stayed in a beautiful, shared room, and their health seemed to improve substantially. George was eating better, gaining weight, and smiling once again, and his Creative Companion visited him there, in the home. And although Margaret never stopped reminding everyone that she’d rather be at home, she was at least happy that they were together!

Unfortunately, this didn’t get to last more than six weeks, when suddenly George was admitted to hospital with a severe chest infection. I met Margaret by his bedside with the collection of personal belongings she’d asked me to bring. She planned on staying with him overnight, sleeping upright in a chair. The next day he had worsened, and we were told he would pass before the end of the day. George’s last hours were spent with Margaret and I taking turns to stroke his hands and face, sing him songs, and tell funny reminiscent stories of his days as a beekeeper, musician and all-round upstanding gentleman that never failed to bring a smile to the face of the person he was with.

As sad as that time was, I look back and am reassured that having someone with my role there at every moment, went some way to easing the situation. I can’t imagine how awful it would have been had I not been able to step in and liaise between clinicians, the attorney, carers and hospital staff, and of course George and Margaret.

The nurse came and closed George’s eyes after he passed. Margaret spent some time with him on her own, and I returned later to let her know that George’s Creative Companion was on standby to meet us at their home and stay with her for as long as she wanted.

End of life is never easy for anyone. If you think we can help with managing complex situations and providing emotional support, then please get in touch.

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