Dying Matters, So Does Talking About It – Part One

by Martha Pusey


In Victorian times death was celebrated and often the only occasions that people were photographed, these were staged and set pictures of the deceased.  However, as a nation we have moved away from the conversations about death and dying to the point that it is extremely taboo and yet it is one of the most certain things that will happen to each and every one of us. But for those of us who work in care, the deaths of people we look after is very real.

“I have nothing to fear but death itself” Sir Terry Pratchett

Ironic for a writer of fantasy novels with the character of ‘Death’ appearing in many of his books should himself be fearful of death. For me as a reader it is the humour in the character that makes Death so realistic. However, death can become such a scary concept and one that no one really wants to talk about. Throughout generations, how society talks about death has changed. I was four when I had my first experience with death and the passing of my great grandmother, Clara. The tradition within the family was one that some might consider morbid or scary but a common practice in some cultures. The body of the deceased would remain in state in their family home in an open coffin, allowing family to pay their last respects. At the age of four I was ushered into a darkened room where my great Grandma lay in an open coffin. I remember vividly to this day her face, very peaceful surrounded by white lace.

My next experience with death was aged 18 when I was working in a care home, Molly had ‘Picks Disease’, a rare form of dementia. She had lost all her language to communicate apart from being able to sing ‘All things bright and beautiful’ and the word ‘nice’. I took Molly to her room at the end of the evening, helped her out of her clothing and into a nightie and then supported her to sit on the toilet. I said I would leave her a few minutes and comes back to give her some privacy. Sadly, in the few minutes that I was out of the room, Molly suffered a major heart attack and passed away. When someone dies in a care home there is a process called ‘laying out’ a body, which is the last act of care, love and kindness that can be shown. Although deceased they are still a human that you cared for and laying out involves washing, dressing and grooming the person. I don’t think I ever gave this task a second thought as it became second nature to me as part of my caring role.

Later in my career and understanding the importance of having conversations about dying well, I have been the one to be bold and raise the question of “what do you want to happen when you die?” Working with one Mum and her son Graeme who was diagnosed with Down’s Syndrome and young onset dementia, this was a question I had to ask, a question that no parent would ever want to consider. It was on the third time of asking that question that they were both prepared to talk openly about the future, about dying.

The Only Certainty in Life is Death  

It is one of the most common questions that is asked of the Wayfinders – “When will I die”. This is a question that no one can really answer but a reality that people may want to face. In a conversation with one of our carers she cried and told me that she felt she had wasted time denying her husband’s diagnosis of dementia as now he only had 2 years left to live and that they would be the most difficult two years of their lives. As I explored with her this idea of the number of years remaining, she referred something that she had read. This is the warning – don’t believe everything you read, I am not going to tell you exact figures but the average for someone living after a diagnosis is between 5-10 years. This is dependent on a number of factors including when the person was first diagnosed and other health issues the person might have.  We are all individual, so is dementia and how it affects each person and therefore how long they will live with the disease is also unique to each person.

When you work in the caring profession you become aware of the signs of death, it becomes like a ‘knowing’ sense that death is close. I knew to within hours that my Grandad who I cared for was close to passing. There are very subtle signs that people may not normally notice and for me this time is when the person who is passing needs to have someone with them.

As a young care worker, having to tell family members that their person is going to pass away was never nice and a conversation that I never liked to have with family.  Having to retain a professional air while inside my heart was breaking like the families because in caring for that person, I have got to know them and become fond of them too. I know that I have become hardened to death over the years and know that caring and maintaining a boundary is the only way that will prevent me from giving up my caring role because that continual sense of loss is hard.

People often talk about seeing family members who have passed, and some people do believe that there is life after death and the dead come to meet us to help us as we pass over. I know many people I have worked with talked about seeing their parents or other family members in the room, others talk of ‘the light’. Not knowing what does happen after death I do find some comfort that the person I am with as they pass is greeted by a loved one, it seems to make the process less scary for them. For some people in their last days, they also need the reassurance that it is ok for them to let go – they might be dying, but they will have suffered the grief for loved ones and know that the people they are leaving will experience emotions they have.  For Winnie, one lady I cared for as she died, she needed the reassurance that her son and daughter would get on again and hung on until they could both be at her bedside and she heard them apologise to each other and agree to put their past fights behind them. It gave her the peace knowing that her children would not be fighting after she had passed. For other people, just telling them ‘it is ok for them to pass over’ that they can ‘let go’ is the comfort that person needs.

Live Well, Die Well

At Sage House we promote people living well with dementia, but they also need to be able to die well, not in pain, in familiar surroundings, with family and feeling loved. When I talk to carers about planning for their or a loved one passing, I draw on the work of Barbara Pointin MBE, who cared for her husband Malcom (pictured below) who lived with dementia. Their journey with the disease was captured in a BBC documentary, ‘Love’s Farewell’ (1). Barbara talked passionately about the process of dying well and she cared for her husband at home until he passed. I once heard Barbara talk about giving comfort to someone as they pass, stroking their head, talking gently to them, keeping them warm are important in the dying well process.

I believe that no one should die alone, and I have sat vigil as a carer at people’s bedside’s when no family have been available. There can be such peace in the last moments of people lives and it is a privilege to be part of their life even for such a short time.

During Covid-19 however, it has been nearly impossible for loved ones to be with their family as they pass, and this makes the grieving process harder. For family carers supported by Sage House who have lost loved ones during the pandemic the team has supported them through phone calls and taking advice from a local funeral arranger, suggesting that carers write a letter to their loved one, saying all the things they would have wanted to say when they were passing. They can then read the letter to the person’s photo or something memorable belonging to them. This process should help with starting the grieving and coming to terms with the death of their loved one and not being able to spend their last moments together.

Nearing the End

Talking about death and dying are such taboo subjects but are conversations that are so important. Knowing how someone would like to spend their final days or what songs they would like played at their funeral is so important and helps ensure that someone can ‘Die Well’.

Death is not scary and should not be feared, it is the one certainty that there is in this life. If I have learnt anything through this last year of Covid-19 it is that life needs to be lived to the full because time is short and life is precious.

Please also refer to the two Grief blogs in this series and look out for Dying Matters part two, where I explore how to have conversations with people to plan their own death.