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50. Person-Centred Support at the End-of-Life - A Manager's Perspective

 Written by Roxanne Leach, Frontline Manager, MacIntyre.


I knew supporting a person at the end of their life was a possibility, even an inevitability. Dying is how all life ends and when you are supporting people to live, of course at some point you would be supporting someone to die. Despite this, I had never put much thought into what supporting someone through the final months of their life would be like, how it would make me feel, and what effect it would have.

 

The moment I realised I would be supporting someone to die, was during a routine appointment for Tyrone*. During the appointment, the oncologist struggled to communicate with Tyrone. Tyrone (who is deaf) was tired that day and the doctor stopped trying to talk to him and instead spoke to everyone else in the room. I made notes of everything that was said, planning to write it up and share it with Tyrone later. That was until the doctor explained the chemotherapy was no longer working. All other treatment from this point forward would be palliative. My head spun as I tried to process this. I had very selfish thoughts of how much harder this was going to make my job, I had thoughts of how would I tell my team, and then I saw the grief of a mother just feet away from me, and my thoughts turned to Tyrone who was dosing next to me, blissfully unaware of the sadness that filled the room. I was not ready to break this to him and we were out of time for the appointment. I went home with him and gave my staff team a vague update that he was to stop chemo whilst other treatments were going to be considered. Now was not the moment to tell them he was dying. I needed to do that in the right way and when I had time to process it myself.


I drove home that day, filled with such rage and sadness that I had to pull the car over until I was safe to drive again. It felt entirely unfair that Tyrone’s communication needs had not been met and that his family knew he was going to die but he didn’t. It felt entirely unfair that I would have to figure out how to tell him, surely that wasn’t my job, that had to be the job of a doctor who gave that kind of news every day. Fortunately, when the time came to tell Tyrone, this didn’t fall upon me, help wasn’t even asked for, it was just given and Tyrone was supported through this by a team of wonderful people. Being a manager had always felt like a lonely sort of job, being a part of a team but a little separate. Suddenly I didn’t feel so alone anymore, suddenly there were all these kind and wonderful people offering me help and support. I wasn’t just the manager of a little supported living service, I was a part of a bigger picture full of experience, knowledge, and compassion. I was, and still am, so grateful for this.

 

I had to learn faster than I would have liked over the coming week. My biggest regret is not starting my learning sooner, but I thought Tyrone was going to be okay. He had stopped chemo, he had rung the bell, he had been cancer-free! But the cancer came back so fast, it was like the rug was pulled from under us. The cancer was back, then he could no longer be treated and then he only had weeks left. It was too fast and I felt I was always chasing my tail. My life became about cancer and death. My thoughts are constantly on how we help Tyrone and how I help my staff team to cope. I worried about taking days off, in case I wasn’t there when I was needed. It felt like I was carrying around a constant and heavy burden, despite all the help and support I had, this was mine to carry.


On Sunday the 19th November, Tyrone passed away peacefully in his bed. I couldn’t tell you much about that day, I don’t know what the weather was doing, what the traffic was like on my drive into work, what I was wearing, what I ate. But I remember the people I saw. I had rushed into work early to help my team as they were having a difficult time. When I arrived, I wasn’t greeted by one of my team, I was greeted by a kind looking hospice nurse - she had dark hair and dark glasses. She smiled but somehow I knew from her face what she was going to tell me before she even said it. She said a lot of kind, soothing words but I didn’t hear much, just two sentences “He died at 09:50 this morning” and “It’s like a family here”. I responded with the only thing I could think to say “I thought we had longer”.


I had always meant to be there when Tyrone died, I couldn’t fathom leaving that weight on the shoulders of one of my team, and it felt awful that they had been burdened with this. I couldn’t take the hurt away, I couldn’t change what had happened or make it any easier, and they had to bear it. How could I make it better when I was drowning in grief and guilt myself?


Everything happened so slowly but so quickly that day. I was thrown from place to place. I was in the room where Tyrone’s body lay still, his mother holding his hand and silently crying. Then I was phoning my team to tell them the news. Then I was telling the other people we support what had happened. Then the rest of Tyrone’s family arrived. Then Tyrone’s body was taken by the funeral home, his family left, my team all went home, and then I was left. I had often heard people talking about a loud silence that happens after a person dies. I now knew what that meant. The silence was deafening and rung through my ears. His absence was so apparent and so distressing. What I would have given to hear him sneeze loudly or nosily read out the football scores but instead I was left with an awful calmness and just my own thoughts for company.


Somehow the next day was worse. Perhaps, just because I was over the initial shock or perhaps because I had things to do, that I did not want to do, like writing a formal, emotionless notification of his death. I went into my office. On the way to my desk I had to walk past at least four people who said things to me like “I am sorry” and “well done to you and your team”. Once I arrived at my desk the kind thoughts continued, I was made a cup of tea, given chocolates, and the “well done” and “you did amazing” continued. The tears flowed more freely then they had done the previous day. It took me a while to realise why this bothered me. Part of it was because many of the well-wishers did not know Tyrone, and it felt like an intrusion on something incredibly personal. The other was being told how much of a good job I had done. A person I cared for deeply had died, it did not feel I had done a good job. I didn’t have a choice, I did what I had to do and I tolerated something awful and dragged a team of people through it with me. I didn’t want to be congratulated for that, you wouldn’t say well done to someone who had just lost a member of their family.


I often said when Tyrone was most ill, that I would miss being tired. When Tyrone started to become very ill, he would wake the sleep in member of staff up and we would sit in his flat for hours, just watching something on TV with him, for me it was often Star Trek, Tyrone knew I liked it. I wasn’t wrong. I miss the knock on the door at night to wake me up, I regret not spending longer with him and enduring a little more tiredness. What I would give for just one more episode of Star Trek.


Talking has helped. There is a power in talking that I had never really appreciated. I am usually a “stiff upper lip” kind of person but letting the thoughts out has helped. Saying, I miss him when I feel it most helps let it out somehow. Talking over the day he died with the people who were there feels like a release and makes everything feel a little more bearable. I have learned that when someone asks me how I am, not just default to a polite, “I’m okay thanks, and you?” Instead, I answer the question, “I am coping” or “I feel a bit rubbish today”. I think this would be so refreshing if we did this more as a society. Tell someone if you feel good, but also tell them if you feel tired, or fed up.


Now just over a week from Tyrone’s death, the dust has settled a bit, and the grief and the trauma have become a new normal in my life, I have had time to reflect upon the whole experience. The praise still makes me deeply uncomfortable but I can now see at least that Tyrone had a good death which happened because of my wonderful team. We could have thrown in the towel and said we couldn’t manage him in his own home or team members could have said it was too hard and handed in their notice. Neither of those things happened and it meant Tyrone spent his final weeks in his home that he loved, surrounded by people who adored him. Supporting Tyrone has been one of the biggest privileges of my career and saying goodbye to him has been one of the hardest. And maybe that’s how I know we did do a “good job”, it hurts so badly because we cared so deeply. There’s a cruel irony in that, doing a good job, means suffering more, but I wouldn’t change it, not for anything.


*Thank you to Tyrone’s family who have permitted us to share his story.

 

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