Raymond Nye is the husband of Mavis Nye, who was diagnosed with pleural mesothelioma in 2009 and has since set up the Mavis Nye Foundation to support others with this life-limiting disease. His Twitter handle is @Grandmamavis
Emilie Couchman is an academic GP, currently undertaking a PhD with the Mesothelioma UK Research Centre at the University of Sheffield and working as a GP on a part-time basis in Northumberland. Her Twitter handle is @DrEmilieCouch
Emilie Couchman: In my decade-long experience of undertaking palliative care research, the term ‘carer’ has never quite conveyed or yielded what I wished it would. Of course, for certain studies, ‘carer’ might be absolutely the right term to use. Personally, though, I use the term ‘close person’ as a researcher. Over the years, this has also translated into my clinical practice.
‘Informal care is generally defined as the unpaid care provided to older and dependent persons by a person with whom they have a social relationship, such as a spouse, parent, child, other relative, neighbour, friend or other non-kin.’1
Within my research involving people with life-limiting illness, I encounter such strength. Participants often can’t relate to being asked about their ‘carer’, and I have found that this term can alienate and make people feel inadequate somehow, particularly if they don’t identify as having one. It can also irritate the ‘carer’ themselves; perhaps labelling themselves as such alters their perception of their relationship with the ‘patient’, and whatever meaning they may attribute to it within their psychosocial context. From a recruitment point of view, King et al. discuss that the term ‘carer’ may not be applicable at all stages of the disease trajectory, thus individuals may not relate to this role or identify themselves as eligible to participate in research if study documents include this term.2
Raymond Nye has been married for 63 years to Mavis, a remarkable woman who was diagnosed with pleural mesothelioma 14 years ago. He recently reflected on his perception of the term ‘carer’. People need to hear it:
“I was asked recently what my take on carers was. I had to think about that. I suspect if you asked most people that question, you may well get the same reaction. It’s a cross between being a nurse, home help and a form of mental illness. By that I mean, if the pressures overwhelm you, it can affect you mentally. If that was asked of me prior to 2009, I would have to say, ‘I don’t have any take’, that I had never considered it. Well, not specifically. I mean, it’s a natural thing to think that you would care for those you love, isn’t it? And until that day arrives, it’s just something that sits in the back of your mind.
It’s a cross between being a nurse, home help and a form of mental illness. By that I mean, if the pressures overwhelm you, it can affect you mentally.
For me, that question was answered much sooner than I thought. It leapt out at me in 2009 when my wife Mavis was diagnosed with mesothelioma. Her doctor gave her three months to live, at best. It was not immediately apparent at that time that it was now to be a responsibility that I must assume.
Unless you have been thrust into that situation, you have no idea. My only concern at that time was to get Mavis home, and for whatever time she had left, to ensure that I could make her as comfortable as I could. I began to take on new roles, to which I was a stranger. And in doing so, I had now become a ‘carer’.
I think using that term is wrong. It infers that prior to taking on that role, that you didn’t care before, which is nonsense. At that time, we had been married almost 50 years we were a team, we each just had different roles. Now, some of her roles would become mine. Was that such a big deal? No, of course not. This new role for me was, not these new roles, or the extra things I now had to do. My brain was in a mess, all I could think of was, ‘I am going to lose the most precious thing in my life: Mavis’. 53 years we had been together. Apart from my National Service, never a day apart. How would I cope? How would I live without her? Did I want to go on without her? No, I didn’t. My mind spent ages torturing myself on how I could and would end it. My thoughts were consumed with this.
Looking back this was my mental illness phase.
With the passing of each day, the new roles quickly became the norm. But I had another problem. Mavis was stubborn. She insisted doing the things she had always done. She constantly stepped in to continue her roles. Now I had a decision to make. I had to do things before she knew they wanted doing. Because I couldn’t let her see that she needed help. It would have undermined her determination. How difficult was that?
I was now paranoid. If she was sleeping in a chair or in bed, I constantly checked her. One minute full of fear and dread, next relieved. It was a nightmare. Her prognosis of three months was now fast approaching, and my fears were mounting day by day. For me, it was unbearable; I know for her it must have been even worse.
They deny they need a medal for what they do. I now have the awareness and the greatest respect for these unsung heroes.
But we passed that three months, and entered into a treatment phase. Which has lasted 14 years now. Chemo and trials, she has tried them all. Too many for me to name. But oddly enough all the chemo and trials the sickness and pain she has been through only served to strengthen her.
She went on to begin her own charity. The Mavis Nye Foundation set up to help other victims of this deadly disease. She runs several support groups on Facebook helping victims and carers all round the world. She has been awarded so many awards, her most treasured is her BCA and her BEM she was also honoured with a Doctorship at Canterbury University. She says all this work she does keeps her going and helps put the inevitable at the back of her mind. For me it does not diminish that initial pain, the ongoing fear. I am just happy that I can continue to help her in whatever she needs and to do whatever I can to clear the road ahead. At this point in time, I have a problem. Mavis being so fiercely independent, she refuses to accept she needs any help. Mainly, she will not put any burden on to me.
So, now I will try to answer that original question. What is my take on carers? They deny they need a medal for what they do. I now have the awareness and the greatest respect for these unsung heroes. For me. I will continue to care for Mavis, to do whatever I can for her until my last breath. So, if that is a carer, then I am proud to be a carer.”
- Broese van Groenou M, De Boer, A Providing informal care in a changing society. European Journal of Ageing. 2016;13(3):271–9.
- King M, Jones, J, Nazareth, I. Concern and Continuity in the Care of Cancer Patients and their Carers: a multi-method approach to enlightened management. National Co-ordinating Centre for NHS Service Delivery and Organisation; 2006.