“Our physical presence may be restricted for now,
but our imagination and the love we hold for each other is limitless”.
Sarah Chavez, Director of The Order of the Good Death
During this crisis, the Government is changing the way Funeral Directors (FD) care for the deceased and is advising on best funeral practice given the nature of COVID 19. We are entering a time when sadly, there will be many deaths where families may not be able to be with their loved one’s death or the funeral. This can make grief more complicated to navigate.
We have been thinking about ways in which families might be able to feel closer to their loved one following an enforced separation at the time of death. We recognize that the updated restrictions in place about the care of body of the one who has died, may bring additional upset and grief to families.
Funeral Directors have a burden of responsibility to manage the risks of COVID19 for themselves and their clients and their own families too, whilst conducting a thoughtful and reflective service for those who have been bereaved. They are being asked to do this at an acute period of national and international stress and anxiety.
In part, due to this unprecedented time we all find ourselves in, a unique bond may be created between the Funeral Director and the relatives. They are planning the funeral remotely together, often not seeing the whole family, perhaps not being able to grasp all the dynamics or picking up on all the non-verbal cues they might if they were seeing a family face to face. They wish to honour the deceased and give the family the service they desire but they are doing it within Government restrictions and legal requirements. It must be quite a balancing act.
They are professionals but they are also human beings. They do realise this presents very difficult circumstances for families. If you have decided to have a Memorial Service later in the year, we suggest considering using the same Funeral Director if this is practical and financially possible, to help you plan that event. That way you would ensure continuity of care and attention. That bond may be equally important to the funeral staff as it is to you, the family, and could prove important in the grieving process.
We would like to offer some suggestions below which may be meaningful for those who are faced with a funeral to plan at this difficult time. We must all bear in mind, if someone has died of COVID 19, it may not be possible for the body to be touched as COVID 19 is a Certifiable Disease and as such there are legal requirements in place to protect everyone. You would need to check with your own FD, as to the current situation. The Government’s advice is updated regularly so it is always worth checking the latest.
SOME IDEAS WHICH MIGHT BE HELPFUL: Ask your FD to take a photograph of your loved one, or of their hand (if this would be meaningful to you).
Can your FD do a tracing of the deceased’s hand (if touching is allowed)? It could potentially be copied and decorated later-on in any way families want: some suggestions are: silver leaf, photo chromic ink which changes colour when exposed to sunlight or simply colouring or painting. This might be a helpful way to involve children in the funeral.
Can your FD cut some locks of hair? They can be tied with ribbon and put into a little bag or envelope.
WHAT SORTS OF THINGS CAN POTENTIALLY BE PUT IN OR ON THE COFFIN: If the body cannot be dressed because of infection risk, ask if your FD will lay the chosen outfit or clothes on top of the body.
Loved ones could make a ‘kiss mark’ (with lipstick) on paper and ask the FD to tuck it into a pocket of the clothing.
Letters, words, photos, poems and drawings could be scanned to (or taken to the Funeral Home, if permitted) and put with the deceased for burial or cremation or laid on top of the coffin so they can be seen. This is a particularly practical and special way to include children in the funeral rites.
SOME IDEAS FOR THE FUNERAL ITSELF: One aspect of this more isolated time is that families can ‘let go’ of hosting the funeral and ‘being strong’ because the service will be very intimate and could potentially be more meaningful because of that. Family who are present, can hold the space for all the mourners who cannot be present and that is a precious role. It may feel solitary with just a few present, but it is important to recognize that the mourners, are part of a huge collective grief at this difficult time and they are not alone in that sense.
Families can consider having the service streamed to other people and with the online availability of Zoom and other technologies, people at home can also be streaming the other way, to the funeral or graveside if they wanted to.
Record phone videos of short messages to be played at the funeral.
Have a photographer (professional or informally) to create a record of the service or even a video for the wider family.
The family could ask the mourners to write them letters or notes with stories and memories of the person who died. These could then be used during a Memorial Service later in the year if that is the plan.
With so many florists closed, getting flowers may be a challenge but supermarkets are still selling them if they are in short supply.
Consider using paper flowers. You could ask the wider family to send a one line note or message which could be scanned over, prepared and then tied to the flowers. If there is a large number of the notes, perhaps they could be laid on top of the coffin.
The funeral cortege can drive by the house where possible and make a short stop. This could allow family and neighbours, adhering to keeping to the 2m distance, to stand outside to pay their respects. They could find a way to show they love and respect by bowing, nodding their heads, waving flags and children could release balloons or even blow bubbles.
Is this the time to have our country go back to openly marking a bereavement? Hanging a black ribbon or bow on your front door shows you suffered a recent bereavement and gives people in your street the opportunity to acknowledge it and hopefully, lend their support.
During a streamed service the family can ask the virtual mourners to synchronize their actions at some point in the service, so they come together as a group, in the moment. Some examples are:
all light a candle at the same time, say the same poem/ reading or prayer, open a window and say the loved one’s name out loud or hold your hands over your hearts.
If people cannot be present at the virtual or real funeral, can they take a walk outside to consciously think about the beloved at the time of the service (as part of their one allotted exercise time)?
AFTER THE FUNERAL: What sort of things can people do to remember their loved one when the pain of the difficult and potentially isolated death is so raw and real? It is important to know that communities, friends, relatives and families can still gather in grief, just not in the ‘old’ way, at the moment, but none-the-less meaningful.
They could make an altar/special place in their home with objects, photos and special memories on it to keep them close in their hearts.
They could create a ‘virtual’ space to remember their loved one, such as a private Facebook group. This can be a place where people are able to leave messages, poems, songs, special mementos, photos of fun they had or shared food or recipes, photos of flowers and to tell stories about all these things.
They might consider hosting a communal meal via Zoom or a similar App in order to create community within their grief, perhaps using their loved one’s favorite recipe?
They might be able to create a Playlist to which family and friends can contribute meaningful music.
Friends or family members could have a meal or care package sent via a local shop, restaurant or on-line shop.
The family can post the order of service to the virtual attendees perhaps with a packet of seeds like Forget Me Nots (though they can be hard to source at the moment but can be done later in the year).
Can you find sensory ways to feel close to the deceased like spritzing a piece of card with his aftershave or her perfume? Our sense of smell is one way we can connect instantly and remember.
Consider using the placement of the gravestone, the scattering or interring of the ashes at a future time, as an opportunity to gather loved ones, relatives and friends who could not be present due to the pandemic to pay their respects. The same FD, Celebrant or Clergy could be asked to attend and perhaps use the same music from the funeral to link the two services.
SYMBOLIC WAYS TO REMEMBER YOUR LOVED ONE: Lastly, a few ideas for families which may be especially poignant given the difficult circumstances which may have unfolded around the death. We can turn to symbolic ways in which we can express our feelings and thoughts.
You can write a letter to your loved one or even to yourself. You may never need to re-read it, but it can be the process of writing which is cathartic and meaningful. Then you can decide what to do with it. Some suggestions are burn it and send it up into the universe, bury it in your garden or in a special place or let it float away on a body of water which is special to you.
If smell feels especially important to you, you may want to hold, wear or sleep with items of clothing your loved one has worn. This is entirely natural and normal. Two bits of advice at this time is choose something your loved one has not worn while sick, as the evidence is not clear about how long the virus can stay on cloth. Then keep that unworn clothing, unwashed. Once washed often that personal smell dissipates which can be heartbreaking for some people.
Keep their presence in the home alive with a lit candle, photographs, shared music, their beloved rug or scarf on the couch or any other way that is meaningful to you.
We hope this gives you some ideas to consider as you embark on planning a funeral for someone you love deeply or to pass onto friends and families at a time they might need them. Our hearts go out to all of you who find yourselves in this position.
This blog has been co-authored by Wendelien McNicoll 8/4/2020
Most of us think of grief as something which happens after a death. In fact, grief can start a long time beforehand, but this is often not acknowledged, talked about or even understood. When a loved one receives a terminal diagnosis, grief can begin right there and then. All the feelings and thoughts experienced at this time can be just as intense and difficult as those after a death.
During this pandemic, many of you will be worrying about families and friends. Perhaps especially about relatives who are already poorly and possibly dying. Anticipatory grief is highlighted and very much ‘in the air’ at this moment.
How it is different to other kinds of grief? The grief felt before a death might feel no different to the grief afterwards, but it does present some unique challenges.
Firstly, not everyone will experience anticipatory grief. For some, it may be that not acknowledging what is happening is a very good coping strategy and grieving may be perceived as giving up hope.
Those who are living with the knowledge of their loved one’s impending death can find themselves conflicted. One the one hand, they hold onto the hope that the person won’t die but at the same time, they are struggling with the idea of letting go of their beloved when they do die.
It may be that they wax and wane between these two polar positions. This is a tender and difficult situation to cope with.
How might anticipatory grief affect someone? We often don’t know exactly when someone will die, as this is hard to predict. Everyone’s last weeks and days are as unique as they are. When anticipatory grief goes on for a long time, this can really start to wear you down emotionally and physically. It literally saps your energy to keep going every day.
Fear, anxiety and panic can become a part of your life. You may live your life in hyper-vigilance. “What is going to happen next”? This can take its toll on your wellbeing and your stability. You might find your emotions and thoughts are all over the place and you may find yourself very distracted and unable to concentrate.
Time is a factor too, because although, undoubtedly, sudden deaths are deeply shocking and hard to come to terms with, a slow deterioration towards death can erode our well-being minute by minute, day by day. This can have a big impact on carers and loved ones. There may be a horrible feeling of dread which is eked out day after day.
You may find yourself putting your own life on hold and feeling fed up on occasions, which is of course entirely natural, though you may believe you cannot say that out loud for fear of judgement from others.
Natural and normal feelings There is no emotion you could name which might not be present in anticipatory grief. To name a few: sadness, anger, frustration, hopefulness, desperation, anxiety, panic, insecurity, guilt, shame, love, isolation, depressed, fed-up. All these feelings are to be expected and are natural and normal.
I also want to say, importantly, that it is entirely normal to feel you wish it would all be over soon because you cannot bear it any longer. Many people don’t want to admit this but as a former counsellor I know that lots of relatives and loved ones feel this way and experience feelings of intense guilt because of it.
What can you do to support yourself? Acknowledge to yourself and others (if you can) what you’re feeling. Try not to hide those emotions and remember that others may well be feeling the same, but no-one is talking about it.
Ask for help. I write this because so many of you might be soldiering on (I use that term on purpose). I suspect people would love to help support you if you would only ask them?
Find ways to spend what time you have with your loved one that are meaningful to you both. How is the time to start having those conversations you might have been avoiding. What is it you would like to say to your loved one? Perhaps think about what you might regret not having said while you had the chance.
Please take care of yourself. Find time for a bit of relaxation, make time to connect with your family, to have a bath, to cook a nice meal, to Facetime, WhatsApp or call your friends, to breathe deeply, to read a book and ultimately to reassure yourself that you will be okay.
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.