Many parents feel helpless and useless when their child is dying. They may feel there is nothing they can do. Perhaps they feel guilty that they sometimes feel exhausted with caring for their child. Most children find that having their parents with them is an immense comfort. It may be the most important thing you can do for your child. Your child may also need to have some time away from you and need their own space, and time with others. A respect for your child’s wishes is very important, even if you feel rejected at times. Some children want to protect their family and friends. Others may distance themselves or take control of who should be there.
Listening to what your child says, and being aware of what they don’t say, is very important. Try to honour your child’s wishes and help them with unfinished business.
Who will help me to care for my child?
The aim of palliative care is to give your child the best quality of life possible in the time that is left. You may take on as much or as little of this care as you feel able. The arrangement should always be a flexible one allowing you to take on more, or relinquish, some of your child’s care as you wish.
If you have a specialist nurse looking after your child, they will most likely be the key person coordinating everyone who may be involved during palliative care and in managing any symptoms that your child may have. They will arrange a meeting with your GP, health visitor, children’s community nurse or local children’s hospice nurse in order the make arrangements which meet your needs. If there is no specialist nurse, the hospital will liaise directly with the healthcare team at your local surgery.
Where should my child die?
Most parents want to know where their child can die and how it will happen. Where your child dies is very much up to you as a family and what you feel is best. You can always change your mind. Many children prefer to die at home. This offers familiar surroundings and the comfort of home. Family, friends, toys and pets can be close to hand. It may be easier for brothers and sisters to be present. If the brother or sister changes their mind, needs to be out of the room, or just wants to escape from it all for a while, you may want a relative or close friend to look after them. Doctors and nurses will visit and help.
Sometimes children need to go back to hospital or a hospice for a short time for symptom control. It is your choice if your child stays there or is taken back home to die. Events may not go as planned and your child may not die in your chosen place, or it may happen rather more quickly than expected. Experienced staff will help guide you at this time and ensure that your child’s symptoms are well controlled.
When do we have to call someone?
If you think your child is about to die and you wish someone to be with you, you should be able to call your doctor or nurse to arrange this. After your child has died, you do not have to call your GP or funeral director straight away, particularly when you want some time on your own with your child and family. It is very helpful to talk about this with your doctor or nurse in advance so they know what your wishes are.
Who should be there at the end?
Many parents and brothers and sisters imagine that they will be there at the time when their child dies. For some it can be very comforting, but it can be difficult for parents who were not actually with their chid when they die. Sometimes children die when a parent has left the room.
Some children may be aware of their relatives’ sadness and may be trying to protect them from it. One son told his mother, as he was slipping into a coma, to go and look after his sister. They had said their goodbyes earlier and his mother felt that he knew how upset she was going to be. She felt he was protecting her from pain.
Brothers and sisters who are included at this time generally cope better in the months following the death of their brother or sister. However, if the child who is dying, or their brother or sister, has strong opinions about this, it is crucial to listen to them. Respecting their wishes allows them to feel more in control.
Respecting your child’s wishes and privacy may also mean vetting visitors. You may want to appoint a third party to give out important information so you and your family can spend time together uninterrupted.
How can I make my child more comfortable?
As a parent, you know your child best and will have their likes and dislikes at your fingertips. You can make them feel comfortable by letting them watch what they want on television, listening to music, favourite stories or other activities. Just being able to do things together, or setting up things for them to do, can be liberating and of great comfort. Keeping your child occupied, interested and stimulated will give both of you something to focus on.
Many children stop eating and drinking towards the end, so don’t expect your child to want, or need, food or drink at the very end. Helping to keep their mouth moist provides comfort and the opportunity for closeness. Offer ice chips and ice pops as they can help dry lips and mouths.
Physical contact can be soothing, particularly if it happens with favourite music. Massage or regular turning to reduce sore skin can be
comforting. Cuddles for those who enjoy them can be the most important thing a parent can do, as it allows the family to be really close.
How will the end be?
We all have images conjured up by television and films, which are probably not very accurate. Nobody can tell us for sure how the end will be, but often the moment of death is peaceful. The skin colour can become paler and breathing becomes shallower or uneven until it stops completely. The child is often unconscious or sometimes sedated or very sleepy. Sometimes he or she will wake from this state for just a few seconds. It is said that people can still hear and sense touch in an unconscious state, so it might feel right to talk to your child and stroke their hand. However, sometimes the death is not like this at all and this can be distressing for the family. Sometimes the child becomes twitchy or agitated before they die. This is a physical sign that they are close to death and not that they are distressed or upset. No two deaths are alike. Your doctor or nurse will be able to discuss what is likely to happen as your child nears death.
What about children who die unexpectedly?
This can feel especially cruel if you had hoped your child would die in a certain place, and with certain people around. To feel unprepared can make the experience seem even more out of your control. This may make you feel helpless or hopeless, especially if you feel there is still unfinished business. For example, that goodbyes were not said or last messages were not conveyed. From the child’s point of view, what is always most important is to know they were loved. Even if one last message re-confirming that was not said, the child would have known they were and always will be loved. It can be very difficult to accept when a child dies totally unexpectedly, such as when they were on active treatment, when families were not expecting this to happen.
If your child dies unexpectedly or very suddenly sometimes the police could be called and there may be a need to involve the coroner. This will be discussed with you by the medical professionals who come to see your child. If this is needed, your child will be treated with respect and sensitivity throughout. Sometimes in a very sudden or unexpected death there may be need for a post mortem, which would be requested by the coroner if they feel it is needed. This is a routine procedure when a child dies unexpectedly, and not because any wrongdoing is suspected.
What happens immediately after the death?
For some people time stands still. Remember that nothing has to be done in a hurry. Your child initially becomes pale, then cold, then becomes stiff and eventually relaxed again. You might wish to sit quietly with your child and talk to them or hold them in your arms. There are no rules and it is important that you do as you wish. Other people may have different views, but the decisions you make are up to you.
You do not even have to use funeral directors. If you want, you can keep your child at home until the funeral. It is worth, however, taking advice from an funeral director, particularly in warm weather conditions. If your child has died very suddenly and there needs to be an investigation it may not be possible to keep your child at home until the funeral.
You may wish to take photographs and perhaps a lock of your child’s hair, or a hand or footprint. You may also want to wash your child and dress them in a favourite outfit. When your child’s body is at the funeral director’s everything can seem distant, but it may also be comforting to know your child is somewhere safe being looked after. One father carried his little daughter out into their garden after she had died, because she had played happily there when she had been well.
Spiritual questions: what really happens after a child dies?
No one can really say for certain, but many people believe that the spirit of the person flies free of their body. Some think the spirit goes to heaven forever and some believe that the spirit is eventually reincarnated into another body at a later date, sometimes within the same family. Even if you believe that death is not the end, you may still need to mourn the fact that you will miss your child in your lifetime.
Some parents believe that death is the end of everything. Even parents who have quite strong religious beliefs sometimes feel the need of reassurance that their child is happy somewhere else. It is certainly important to find what rings true for you, even if it differs widely from what you were taught to believe in. The death of your child can be a time of enormous growth spiritually. The spirit of a person may be what makes each one of us unique and special.
How will I feel after my child has died?
A wide range of feelings is normal at this time. These may range from disbelief, anger, extreme tiredness or uncontrollable tears, to a feeling of peace and almost relief that your child’s suffering has ended. It can be a feeling of ‘sweet sorrow’. Another parent felt nothing, even when she was ringing the funeral director. She supported family and friends, and felt as if she was talking about someone else, not her own son. It wasn’t until she saw the coffin that she felt something. This is a very natural reaction to the pain of losing someone you love very much.