We cover some of the worries other parents have experienced and offer suggestions of how to answer some of the more difficult questions.
The approaching death of your child is likely to be the most difficult time in your life. Although it feels impossible and you may feel your heart is bursting, parents, brothers and sisters and other family members learn to live with it as best they can. Other families have said it is not so much coming to terms with it as living with what is happening. You will always be your child’s mother or father, and your other children will always be a brother or sister. Some families might feel that acknowledging that their child is dying is a sign that they are giving up. Others want to be prepared and get their affairs in order.
Everyone is different, and will cope in their own way. People can go through stages of grief and preparation, but it is individual and not always in the way people imagine. Although it is often felt that difficult times can bring a family together, they can also create divisions. This sometimes happens if one parent has been more involved in their child’s care. Then, parents might be at totally different stages of understanding and preparation.
How can I prepare myself?
It can be helpful to think about what experience you and your family have had of death in the past. Other experiences of death may have been very different from the enormity of losing a child. However, they may help you to recognise ways you coped before that may help you now. Try to see what is happening, not only from your point of view, but also from that of your child and their brothers and sisters.
Planning what to say and what to do can give you some purpose and direction. There may come a time when you will be left alone with your thoughts. Some people have found that talking or writing their feelings down can be helpful.
Just as your feelings change at this time, so will your goals for life. When children are still having treatment, a day-to-day existence is all many people can cope with. When a child is near death, hopes change and it can be a struggle to get through each hour. Some parents say that everything is so different. All values can change and what is so important is giving love and comfort to their dying child and the rest of the family. Some parents have nightmares and dreams about their child’s death where they may say, for example, “How will I cope?”, “Am I strong enough?” These can be a subconscious way of rehearsing and preparing you for what lies ahead.
Spiritual questions
We all have spiritual questions at one time or another. You do not need to have a faith to ask deep and meaningful questions. These thoughts are natural. We belong to a multi-faith and multi-cultural society. When someone we love dies, this may raise difficult questions. We may feel confused and bewildered, whatever our upbringing, cultural, spiritual and religious background.
Some people feel angry and question their beliefs. They question how this can be allowed to happen. Everyone’s experience is different, and some families have found their beliefs to be a great support at this time.
It is often when something as traumatic as illness or death happens that all these feelings are brought to the surface. Questions arise such as “What does this mean?”, “Is there a meaning to life?”, “How can I possibly make sense of all this?” or “Does life have a point any more?” It would be impossible to give answers to all these questions. You may wish to talk to friends, staff at the hospital, the hospital chaplain or a local religious leader. Some people may feel embarrassed about talking about these things but it can often be very valuable.
What have other parents worried about?
Many parents worry about their own life and survival and about the time remaining, or that their child may be in pain. Staff will always offer the best possible pain control. This is usually effective without the child being sedated. Staff understand how important it is for both child and parents to be able to say important messages to each other at this time. It may be useful to remember that children may be able to hear when they are too sleepy to respond, or are sedated. They may also be able to feel touch and cuddles, which can be comforting.
How much time your child has left is very difficult for doctors to predict, and can vary enormously. Often it seems there is not enough time to say all that needs to be said. It is only when a child is within days or hours of death that the amount of time left becomes clearer and can be predicted more precisely. Until this point, it can be hard to believe that it is actually going to happen. What is right for one family will not necessarily be right for another. The desire to make everything perfect is so strong that this in itself can cause worries and extra pressure for the family.
Parents are in an impossible position. While trying to care and anticipate the needs of their dying child, they can feel guilty and torn in many directions about not being able to meet everybody’s needs. It can be a tremendous strain on relationships and some parents find it useful to ask for some outside help. Professionals cannot always recognise families’ needs, so if you feel that you need support, do ask for it. It is hard for people on the outside to know when the time is right to offer help. If you are offered support and it isn’t the right time, it’s OK to say no. It is also OK to ask for help when you feel that it is the right time. Saying no does not mean that you will not be able to receive help later on.
Coping with severe stress can affect some parents so much that it can cause deep depression, acute anxiety or post-traumatic stress disorder, either before or after their child’s death. It is important to ask for professional support from your GP as medication can be a lifeline for some parents at this time.
Caring for your ill child can be very hard work, physically as well as mentally. It can put an almost intolerable strain on parents. One mother described her great feelings of guilt when she almost wished the inevitable event to happen, because she wasn’t sure how much longer the family could cope at home. Parents worry about how they will cope; most families will find the best way for them. Some families, when thinking back, are surprised at the strength they found and how they got through this time.
Divided families
If you and your child’s other parent are separated, you may find there are more practical and emotional considerations to think about. If you are both involved in your child’s care, you may have been able to support each other in dealing with the diagnosis and looking after your child during their treatment. Many couples who are divorced or separated work together well, but the stress of dealing with your child’s illness may cause tension. It can be helpful for you to discuss your plans together and make sure you are both comfortable with the arrangements and how you’ll be involved. You may also find it useful to talk this through with a friend, or your social worker or community team can help to facilitate these discussions.
You might want to consider:
- If your child is staying in hospital, coordinating visiting times so that you can both spend time with your child, whether separately or together.
- If you are planning to care for your child at home, whose house will they be staying in? If your child is staying at their other parent’s home, it may be useful to discuss when you can visit and spend some time with them there so that you are both comfortable with these arrangements.
If your former partner is no longer involved in parenting your child, then you may have already coped with the diagnosis and treatment on your own. During this time, you may have developed good support systems among friends or family, as well as through your hospital or community team. If plans have been made for your child to die at home, the idea of being alone with them when they die, or alone with your other children, can be frightening. The responsibility can feel overwhelming.
Some parents doubt their ability to judge what is happening and when to ask for help. You may want to ask a relative or close friend to be there to support you or to look after your other children if they don’t want to be in the room when your child dies. It can be helpful to talk your plans through with the hospital or community team in advance to reduce your worries and understand the support that is available.
You may want to think about the following questions:
- Does your former partner still have parental responsibility for your child?
- Do (or should) they know about your child’s illness?
- Do they still want to be involved?
- Does your child want to see their other parent? If they do, the hospital or social workers can advise and support you in this.
If you are not actively involved in parenting your child but know about their diagnosis, you may want to get back in contact. In this situation, it might be useful to consider the following questions:
- Does your child want to have contact with you again?
- How does your former partner feel about you being involved in your child’s life?
- What level of involvement do you want to have in the care of your child?
It can be helpful to put a clear plan in place with your former partner to minimise disruption to your child and ensure that everyone is comfortable with how you’ll be involved. Your child’s social worker or community team may be able to facilitate discussions about this with your former partner and your child.
Step families
Step families can sometimes find themselves in awkward situations when dealing with the death of a child. Step parents may ask themselves where they fit in and what role they will play. It can be helpful to discuss your plans in advance and make sure everyone is comfortable with how they’ll be involved.
What about organ donation?
This is such a difficult issue to think about, but some families do want to talk about this. It is best to discuss options (which can be limited) with your doctor or nurse. The latest regulations around organ donation, issued in May 2020, state that organs can’t be donated if the cancer has spread from where it started (metastasised). The aim will be to reduce any risk of the potential recipient getting cancer from any donated organs.