Coping with death as a young carer
Young carers who helped develop this information want you to know one thing: it may be the worst time in your life right now, but this will not last forever.
Many people with cancer get better and recover from treatment. But sadly, some people do not. If someone you love is going to die of cancer, it can feel like the end of your world.
This is a difficult and emotional time. There is lots of help available. You can also call our Support Line free on 0808 808 00 00 or chat to us online (open every day, 8am to 8pm).
If the person you care for is told that they will die, it can be hard for both of you to accept. This is called denial. It is a natural reaction. If the person with cancer is in denial, they may not want to talk about some things. While this may be upsetting for you, denial is a strong coping tool and needs to be respected. Some people eventually accept their situation, but others stay in denial.
It is still important to ask any questions you may have about what is going to happen. You need to know what to expect, so you can try to prepare yourself. You could talk to close family members, a doctor or a nurse.
You may want to say things to the person who is dying. The time that you have together is special, and you are likely to cherish it in future. You could tell the person you love them or talk about favourite memories you have shared. You could tell them that you and your family and friends will look after each other after they have gone. Maybe you could ask them to tell you about their hopes and dreams for your future.
Before they die, the person you look after may get very ill. Try to be prepared for this, as it will be upsetting.
Young carers’ services, or other organisations that support young carers, can help you and your family make an emergency plan. This can cover what to do if the dying person’s health suddenly gets worse or they die at home. If you are by yourself when that happens, call their GP or the NHS helpline 111. A doctor will then come to your home to help you.
If the person you look after becomes very ill, they may go into a hospice. This may also happen if you or your family decides that they cannot cope or need a break from caring responsibilities.
A hospice is a place where people with serious illnesses get free specialist care and support. They have nurses who provide palliative care. This is special care towards the end of life. It includes pain relief for the person who is ill and emotional support for them and their family.
Hospices are designed to be friendly, comfortable places, where family and friends are welcome. Some hospices will let you stay overnight from time to time. You can speak to the nurses about things you can still do to help your loved one.
Talking about your needs
Talking to nurses and doctors can help a lot at this stage. Palliative care nurses can help you make sense of what is happening.
People may think that, because you are young, they need to protect you when someone is dying. This can be frustrating. If you want to be told more information, a young carer support worker could explain this to your family or the healthcare staff.
It is important to be open with your family about what you want. If you would like to be there at the end, make sure people know this and respect your wishes. But if you would rather not be there, that is okay too.
We have more information about what happens in the last few weeks, days, and at the end of life.
If you have decided that you want to be there at the end, knowing what to expect can help you prepare. This will be an emotional experience. But remember you are doing something special by being there to comfort and reassure the person you love.
When someone is dying, they can often still hear you even if they cannot respond. So, keep talking to them.
You may not be able to tell the exact moment when the person dies, but you may notice some physical changes. Their body may relax completely, and they may look peaceful. You cannot be sure how you will feel until this happens. Some people say they feel relieved that the person is at peace and their illness is over.
Losing someone you love is very hard. But remember that there are people around to support you. It is important to express how you are feeling.
Your family will usually start planning the funeral quite quickly. This can be a chance to say goodbye to the person who has died, celebrate their life or share memories with others.
A funeral director or religious leader may come to your home. They may want to speak with you about the person who has died and hear about your memories.
If you want to get involved with the funeral, make sure you tell your family. What happens at the funeral depends on your family’s culture and beliefs. Depending on the type of funeral and your family’s wishes, you may be able to:
- read a poem
- do a special reading
- choose a piece of music
- simply talk about the person who has died and your memories of them.
Tell the person planning the funeral if you want to do any of these things and find out what is possible.
If you do not want to go to the funeral, or you are not allowed to go, there are other ways that you can say goodbye. Here are some ideas:
- Plant a flower or tree, or light a candle, in memory of the person who has died.
- Tie a message to a balloon and let it go.
- Visit a place with a special meaning or memories and perhaps say a few words. This could be a place where the two of you used to go, or just somewhere peaceful.
After someone has died, life at home can feel flat or empty. If the person was cared for at home, nurses and family members may have visited regularly. It can feel quiet and lonely for a while, until you get used to the new situation. Give yourself plenty of time and space. Do not put too much pressure on yourself.
You may worry that you cannot talk about the person who has died to your family, in case it upsets them. But your family will probably understand how you feel at this time. You could comfort each other and share memories.
If you need to sort out the belongings of the person who has died, this can be upsetting. It may feel very final. You may prefer not to do this task for a while. Talk to the rest of your family and try to agree when would be a good time. Make sure you tell someone if there is anything you want to keep. This could be something like a watch, a ring or photos.
Someone close to you dying when you are young can make you feel alone. You may find that none of your friends or classmates have gone through a similar experience. They may not know how to react or what to say. Try to explain to your friends gently that they can support you just by being there and listening. You could encourage them to watch the How to help a grieving friend video from the charity Winston’s Wish.
If it is hard for you to talk to your family or friends, you could contact a cancer support group, young carer worker or counsellor. Just make sure you do not keep your feelings to yourself.
Grief is a word for some of the feelings you may have after someone close to you has died. The thoughts and feelings you have will change. Sometimes they may be very strong. They might stop you doing things. At other times, they may be in the background and you can still do your daily activities.
You may have lots of different emotions. They are unlikely to stay the same. It can feel like they come and go.
If you had a difficult relationship with the person who has died, your feelings may be complicated.
Shock and numbness
Many people describe feeling shocked and numb in the days and weeks after someone they love has died. You may find it hard to believe what has happened. It can feel like you expect the person to walk through the door at any moment.
You may feel angry and think that your loss is unfair. This is a natural reaction.
You may think that you could have done more to help or behaved differently. Perhaps you could talk to a doctor or nurse who looked after the person who has died. You could also talk to your GP. They can reassure you that there is nothing that you could have done to prevent the death. It is not your fault that the person with cancer died.
The person you looked after may have been ill for a long time or had symptoms that were difficult to control. You may feel relieved that they are not suffering any more. You should not feel guilty about this.
You may feel lonely, even when surrounded by family and friends. This is understandable, as the person who has died was a big part of your life. It will take time to get used to them not being around.
You may have a powerful longing to see, speak to or hold the person who has died or dream about them. Some people find looking at photos or thinking about good memories helpful. Others find they need to be distracted by other things.
You may worry about the future and how you and your family will cope. This is natural. When you feel ready, you could talk to your family about how you feel. It may be possible to make some plans together to help you feel more secure.
The sadness you feel after someone close to you dies can be overwhelming. Some people describe it like a physical pain in the chest.
Try not to worry how often you cry. Crying is a healthy way to release strong emotions. If you cannot cry, you may be expressing your grief in a different way. Just do whatever feels right for you.
Physical impact of grief
Grief can also have effects on your body. You may:
- have a poor appetite (do not feel like eating much)
- be irritable or easily annoyed
- find it hard to sleep
- find it hard to concentrate on school work, or at work.
Some people become depressed and stop looking after themselves properly. If this happens, it is important to see your GP and get extra support for your mental health.
Your grief is unique to you. You will have good days and bad days. Try to take one day at a time.
After someone you loved has died, it can feel like nothing is the same any more. But you may find it helpful to get back to your usual routine quite quickly. Try to make sure that you do not isolate yourself. It can be harder to adjust if you have not been to school or college, or seen your friends, for a long time.
There are some things that may help when you are grieving.
5 practical tips
- Look after yourself. Grieving can be a very tiring process. It is important to take care of your health. Try to eat healthily, make time to relax and do regular exercise. These things can help improve your mood.
- Do things you enjoy. It is a good idea to keep your mind busy and distract yourself from sadness. Try to make time for your hobbies. You could spend time with friends or pets, go for a walk or read a book. Try not to feel guilty if you have some fun. This does not mean you have forgotten the person who died.
- Stay connected to the person who died. There are lots of ways to do this. You could write them a letter, put a favourite photo in a frame or visit a place that has nice memories. Do not be afraid to talk about the person or share stories about them.
- Make a memory box. This is a container that holds special things to remind you of the person who died. You could put in photos, some of their favourite music or letters or cards from them. These things can help remind you of happy times you spent together and give you comfort.
- Ask for support. It is important to find someone to talk to about your grief. This could be a family member, close friend, teacher, school nurse, your GP or anyone else you trust.
There are charities that can help if you are coping with grief. You could call the Cruse Bereavement Care young people’s helpline free on 0808 808 1677.
Child Bereavement UK runs support groups and has an app for people aged 11 to 25. This includes stories from bereaved young people and short films they have made. The charity has also made a game called Apart of me – A quest into loss and love, which you can download on your phone. It is designed to help you cope with the death of a loved one.
You will always feel love and sadness for the person who has died. Eventually, you will have fewer bad days and can start to look to the future. This does not mean you are forgetting your loved one.
Below is a sample of the sources used in our information for young carers. If you would like more information about the sources we use, please contact us at email@example.com
Carers Trust. www.carers.org (accessed April 2020).
Carers UK. www.carersuk.org (accessed April 2020).
The Children’s Society. www.childrenssociety.org.uk (accessed April 2020).
Mind. www.mind.org.uk (accessed April 2020).
NHS. Being a young carer: your rights. Available from www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/being-a-young-carer-your-rights (accessed April 2020).
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Chief Medical Editor, Professor Tim Iveson, Consultant Medical Oncologist.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.