The way people die is entirely individual to them, a unique experience for each person. We all come to death in different ways but unless there is a sudden or traumatic death, there are recognisable signs which if we know what to look out for, can guide families and loved ones to know roughly where the dying person is on that trajectory. It can be very helpful to understand the signs of impending death because it can inform decisions that you might make, such as should you stay or go right now, is this a good time to go on holiday or not or shall we call family members from abroad and so on. In particular, I am writing this blog because when my own mother died, had I known some of these things then, I would not have gone home that evening and then I would have been able to be with her when she died. It is not an exact science and many a medical professional has been confounded by patients improving unexpectedly, outliving a prognosis of death and even recovering spectactularly! That said, hospice nurses, palliative care nurses and doulas as well as many doctors have seen a lot of dying patients, and they do understand that there are definite indicators that the end is approaching when a patient has been declining over a period of time.
Denys Cope RN, BSN, a hospice nurse from the USA puts it very well in her book Dying A Natural Passage when she says that "a person naturally begins to do things that conserve energy". She is talking about retrospectively realising that there has been a slowing down process and that it has been unfolding for a while, sometimes even un-noticed. A dying person's need for food diminishes and they naturally eat less. Towards the last weeks and days they may refuse food altogether. This can be very distressing because as caring human beings we want to nourish and feed our loved ones because the underlying thought is, if you don't eat, you will die and I don't want you to die, so you must eat. If we can take on board that the body knows exactly what it is doing, it knows it does not need the fuel like it used to and it's also trying to conserve energy for it's vital functions, like maintaining a heart beat, and taking a breath. Losing our appetite at this point is a very natural and normal phenomenon. Eating at end of life can often make someone feel very unwell because their digestive system has effectively shut down already. The same may apply to drinking. At some point the swallowing reflex diminishes or becomes absent, so eating becomes harder. Choking can become an issue, and this is another reason why eating diminishes, as a way of protecting the person from that.
What might we see in their body which can indicate that death draws nearer? Their face may appear quite pale, white, bluish or yellow if they are jaundiced. Their eyes might be glassy or 'milky' and may be open or shut. Sometimes their pupils are unresponsive so are fixed and staring. Their extremities may feel hot or cold to our touch, and sometimes their nails might have a bluish tinge. This is due to poor circulation which is a very natural phenomenon when death approaches because the heart is slowing down. Towards death, the body becomes weaker, and this is when people used to say, "she took to her bed". Their muscles are wasted, in particular if there has been a long illness and there is increasingly poor muscle tone (so it eventually becomes hard to get up to go to the bathroom). There might be some swelling (oedema), which is usually due to fluid accumulating, and this can make the skin look 'tight'. Sometimes there is a mottling of the skin and they may feel clammy or sticky, hot or cold. These symptoms can sound frightening but they are normal responses to the major organs slowing down as the end approaches. There may be no pain associated with them but if there is, the palliative care team would be monitoring pain relief for the patient.
What might we see in their breathing? It really varies a lot, but there will be less talking and more sleeping. There can be changes in their breathing as death approaches such as heavier breathing, noisy breathing or gasping breaths. To watch this can be upsetting for families and loved ones but usually, it does not cause distress to the one who is dying. You may have heard about 'the death rattle'. This is when some phlegm or secretions rolls backwards and forwards in their airway making a noise as breaths go in and out. It is helpful to realise that it is not distressing the patient at all because they are often non-responsive/deeply asleep at his point. Remember earlier I said the swallowing reflex goes, this is part of not being able to clear it by coughing. The body does not need to clear it at this point. Sometimes there can be an episode of very noisy breathing as the end gets closer. It is called Cheyne-Stokes breathing and it is characterised by loud breaths followed by a period of no breaths. It is difficult to listen to because families often wonder if the person has died, but then there is another breath. Whatever the breathing pattern is, right at the end of life, the breaths generally become quieter, stiller and more spaced apart until eventually one breath is not followed by anther. In my experience, that last period of time is very gentle and peaceful.
What other signs might there be that death is near? One is 'terminal agitation' or restlessness. This often appears as a need to get out of bed, agitated behaviour or commonly plucking of the sheets or 'knitting' of the hands. They might reach out as if towards something or somebody. I have heard this phase likened to the transition phase in birth, when a lot of the work of getting towards the birth has been done, and it transitions into the final phase. It helps to realise that nothing bad is happening at this point. It is natural and part of the dying process (though not always present). It is a temporary phase and a real indicator that death is approaching.
Another indicator that death is near is what is referred to as visioning. Many dying people will tell you at some point that people are in the room talking to them, are visiting them or have come to get them. It is worth really paying attention to their language which might be about taking a trip, packing, going with someone, going home and things of that nature. The reaching out of hands towards a place in the room is sometimes to do with that phenomena. The diminished eating and drinking (fasting if you like) can make space for enhanced spiritual experiences. We don't know if it is real or not but there is a huge body of evidence to say that it happens and importantly it is very real to the dying person. It is recognised as a sign that death is near.
There is another phenomenon I call the Lazarus Moment. This is when someone who has been unresponsive/deeply asleep, suddenly wakes up, even sits up and looks at those around and sometimes even talks to relatives. It is often unexpected and sometimes shocking, but usually very welcomed by families. We don't know why it happens or indeed how it happens but sometimes it does. Some of those moments can offer profound gifts for the relatives. In a lesser way, sometimes there is a burst of energy a day or two (or more sometimes) before death. The patient is more awake, chatting even eating and drinking a bit with visitors. Relatives can occasionally misinterpret this as 'getting better', which it isn't (though of course, it might be a temporary improvement). It can be a happy time, and one that is remembered fondly by families and often is recounted in the story of the death. It might be seen as a golden last moment of normality. The difficulty with it though, is that when it happens you probably do not know you are in that moment.
I hope knowing some of the signs of the approach of death helps you and your family. Overall what I would like to leave you with is a sense that dying is a natural process and our bodies know how to die. It is often us, the families, the bystanders of that process who project how difficult it is onto our loved ones, when in fact they are deeply engaged with dying in a way we cannot know until our turn comes. Their experience is very different to what we the loved ones think it might be. The best we can do is love them to the end and help them die with dignity, grace and hopefully no pain.
Receiving a terminal diagnosis can come as a huge shock. Even if it has been anticipated, it takes a lot of time to recover from what can feel like, a physical blow. The one who is poorly has a lot to contend with and may be going through bouts of anger, sadness, regret, guilt to name a few of the emotions which swirl around at that time. It is a time of adjustment for so many aspects of their life and it takes time to adjust to the idea that life will have a finite end sooner than they and their loved ones imagined. It might be a time of turmoil and upset or it may be that the person feels ready and accepting of their death, it is hard to predict till it happens.
But what of those who stand beside the dying patient? The word which comes to my mind is impotence. What can we do when we feel impotent to help? The ground does not only shift under the patient, it shifts significantly for loved ones and friends too. Just at a time when the patient puts themselves in the hands of experts (doctors and nurses and other professionals), those who love them can feel disempowered to help and support them. That impotent feeling which might be expressed as "what can I do", can feel very frightening. It can be accompanied by the idea that you need to do something, but what exactly? In fact, 'doing' can become a divertion away from just 'being with'.
People who feel uncomfortable about the terminal diagnosis of someone they know may well vacate themselves from the dying time either physically or emotionally or both. It is a sad but true statement. If, on the other hand, someone is able to tolerate their own feelings of fear, anxiety, inadequacy and grief alongside their love for that person, then the stage is set for them to support during this difficult time. I want to acknowledge how hard this can be at times.
What might that support look like? Well of course, it will involve practical jobs like taking someone to medical appointments, helping with medications, offering meals and drinks and at some point maybe personal care when needed. It might be that you strive to make life as normal and fun as it possibly can be. These things are all vital but probably the most important thing of all is to just be there, to show up and to stand alongside with love in your heart. I cannot emphasize how powerful that is. You didn't run away, turn away or shun the one who is dying rathermore you stand in solidarity in the face of the illness and you really see your loved one as themself. If relationships have been difficult in life, this can be challenging but also very rewarding and it can open the channels for a different relationship to be formed at the dying time. There can be healing within that period of time which can alleviate grief in the longer term too.
With love in your heart, with empathy, understanding and warmth you don't actually have to say anything (though of course, you might well do). This is what is called compassionate presence. It does not have to have words or actions because showing up is enough and it can be felt from long distances as well as close up. It emanates from the heart space and it is of invaluable comfort. So that is why, should words fail you, just showing up can be enough. Don't underestimate the power of your loving presence for those who are dying. It is truly a beautiful thing in the real sense of the word.
When grief consumes you, it is virtually impossible to see beyond the waves of emotions which wash over you. In other words, when you are in it, you are in it. There are lots of old sayings which speak to that feeling of being utterly stuck and unable to see beyond a situation. To name a few: “you cannot see the wood for the trees”, “you can’t see further than the end of your nose”, “I am stuck between a rock and a hard place”.
It is a very lonely and isolating place to be because in my own experience and those of my clients, there appears to be no future. Things can look very bleak. It is hard to imagine that things could get better, that there will be a life without the one who has died, that you might be able to cope again with the vagaries of life, or even the simple routines of domesticity that keep the show on the road. As a counsellor it is my job to metaphorically hold the hope until my clients are ready to come and take it back for themselves. Sometimes this happens quite quickly, other times, not so fast, but in the end hope can be a shining beacon of comfort, even within the hopelessness of bereavement.
There is a simple exercise which I find very useful in explaining what evolves during the time of grief. You could try it now if you want to? Firstly, get a large sheet of paper and draw a circle which represents your whole life right now. Use as much of the page as you want. Then, inside the circle, using another colour, draw a second circle to represent how much space your grief takes up in your life at the moment. Don’t rush, really think about it. This first circle drawing is the here and now. Going back to my first paragraph, this is when you are feeling really stuck in the grief. I expect you might have drawn something akin to this?
Now turn the page over and re-draw another circle for your life and how much space you think your grief will take up in two years’ time. Your second drawing overleaf, would be a version of this?
People generally feel that their grief will have diminished and tend to draw the inner circle as a smaller percentage of their life circle, whilst still leaving a large amount of grief in the circle. What actually happens is that the grief stays the same but your life expands around the grief. It is a hard concept because it is so difficult to imagine. However, the sad truth is that though you feel stuck now, life does go on around you, inextricably moving forward, even when you don’t want it to.
Do you know the beautiful poem, Stop All The Clocks by W. H. Auden? The last stanza speaks about feeling everything has come to an end after a loved one's death.
“The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.”
Nothing ever stays the same. It is the way of the world, the way of life, the force of nature and nurture. There will be a life, but it will be a different life, maybe not the one you wanted but never the less, a life. It is in the space between the the grief circle and the life circle, that the growth of a new life happens. You don’t know what directions things will take you in yet. There will be unexpected happenings, unexplained joys, new love in all it's forms, new life, new jobs, new interests. Anything can happen. It is completely unknown and that is frightening and probably too big an idea to contemplate in early grief, but in time your life will grow around your grief.
The reason I say the grief stays the same, is that no one can ever take away your memories of that person, or this period of time, or your pain at the loss, because this is engraved like a fingerprint upon you. It is true that triggers can take you back there, and people often like to feel they can access their grief when they want to, this is the gossamer thread of connection to the one who died. We want to feel them in our bones for ever, and we can and do, so no, the grief does not go. What does happen though, is it becomes less raw, less painful and you cope with it better till in the end it sits quietly within you not causing too much disturbance and allows you to start embracing your different life.
One last point, I mentioned two years, but there is no set time for this to happen. It might be a month or two, it might be ten years or more. Don’t ever try to compare time spans in grief, it is meaningless and generally quite unhelpful. These things are as individual as you are.