In years gone by, when most people died at home, death was part of daily life. Today, when most people die in hospitals or care homes, you may never have seen a person die. If you're dying, understanding more about what might happen in the final weeks and days may calm some of your fears, as well as those of your family.
Everyone will have a different experience of dying – it’s part of what makes us unique. When you have a terminal illness, there will come a time when you start thinking more about the actual process of dying and the moments of death, and what they will be like. These are things which you may have been putting off thinking about, but you might find that talking with your family, friends and care team about the process of dying will help to reassure you and take away some of the fears or worries you may have.
Improving standards of care and effective treatment mean that you can live a relatively active lifestyle during the earlier stages of your illness, but over time you will start to feel more tired and gradually be able to do less.
Dr Kathryn Mannix, a Consultant in Palliative Medicine from Newcastle, explains that it is important to listen to these feelings of tiredness and to make sure that you rest and recharge as often as you need to. When you are coming closer to death, Dr Mannix says “sleeping becomes just as important as eating and drinking.”
You might be worried that going to sleep means you might not wake up again. Dr Mannix has found this a common concern among her patients but she reassures them that “becoming unconscious doesn’t feel like going to sleep.”
She says: “If you are at a point in your illness where you feel tired enough to sleep, then you’re well enough to wake up again after that sleep. It is so important to take, relish and use sleep as an opportunity to recharge your batteries and plan the next thing to look forward to on the other side of that sleep.”
As you feel more tired, your sleep will become longer and deeper, and this will help you to feel more rested and able to do more during the times in which you are awake. It’s natural to come in and out of this deep sleep, and towards the end you’ll be in this unconscious sleep almost all the time.
This change happens very gradually, and you can let your mind and body get used to it during the course of your illness.
Brendan Walsh helped to care for his father Richard, who died aged 87 in 2011. As Richard’s powers slowly faded, Brendan and his family resisted the temptation to make decisions on his behalf.
“We found the best way to serve our dying father was to allow him to stay in control of the final stretch of the journey as much as possible.
“We waited; we listened; we did what we were asked. And his deepest wish was to die at home, in his own bed, without fuss. A doctor for 60 years, he shooed away the procedures and treatments that might have added a few months to his life, and we promised him we would not allow anyone, however well-intentioned, to take him to a nursing home or a hospital. His GP, who knew him well, understood and played along.”
The slow pace of these changes as you are dying means that, like Richard, you’ll have time to prepare yourself, and those around you, for what is to come.
You might also feel reassured to know that you can prepare your family and friends for these changes and for the last moments of life, helping them to know what to look out for in these final days.
As you become close to death, those at your bedside will usually see very gentle breathing, the patterns of which will periodically change. These rhythmic changes are signifying that various parts of your brain are starting to shut down, and are important signs for those around you to know that these are the last stages of life.
One of the more noticeable changes that might appear is a louder, more rasping breathing. Sometimes referred to as a ‘death rattle’, this is often a sign that death is very close. Dr Mannix explains that this loud breathing is a sign of the brain being so deeply relaxed that it no longer notices phlegm or saliva gathering in your throat. Meaning that instead of clearing one’s throat, one simply breathes through the liquid, making a louder sound. As a patient, you will be totally unaware that this is happening, but it could be reassuring for your loved ones to know that it is natural, and not a sign of distress or an attempt to speak.
Open and honest conversations with your friends, family and care team about death will lead to a better understanding of why certain things happen towards the end of a terminal illness.
For two years, with the help of medics, Karen Roberts from Newcastle, lovingly nursed her young son Oliver, who died of a brain tumour, and made sure he was cared for at home in his final days.
“It was peaceful,” she says of Oliver’s death, “and that was how we wanted it to be. We didn’t want him to die but if he had to die, we felt, could he please die peacefully? And we got that wish. And I always look back and think that was such a gift, because so many people don’t get that.”
As he was dying of colon cancer, Andrew Robinson from Coventry, a young man preparing for the priesthood, kept a journal. A few days before he died, he wrote:
“My illness has played a substantial part in my journey to God, to peace and to freedom. The journey is by no means easy, but when you come towards the light at the end of the tunnel, and you feel its warmth, you taste its peace and freedom, you hear the noise of the crowds of angels cheering you on in praise of God, who draws us to the light.”
Tears at Night. Joy at Dawn: Journal of a Dying Seminarian by Andrew Robinson, Alive Publishing ( ISBN 10: 0954033523)