Coping with death when you are a young carer
Not everyone who has cancer dies from their illness. Many people make a full recovery. But if someone you love does die of cancer, it feels like the end of your world. And it will take a long time for life to feel in any way ‘normal’ again.
Before you read this chapter, we just want you to know one thing. It may be the worst time in your life right now, but it won’t last forever. You will get through this.
Those of us who cared for someone with terminal cancer found it easier if everyone was honest. Being honest – about everything – can make it less frightening for everybody. However, if the person you’re caring for has been told that they are going to die, it can be hard to accept. This is called denial, and it’s a normal reaction.
If the person with cancer is in denial, it can be very hard to communicate with them. There are certain things that they may not talk about. While it may be upsetting for you, denial is a strong coping tool and needs to be respected. Some people will eventually accept their situation, but some stay in denial.
My mum drank because she couldn’t cope with the fact that she was going to die.
If that happens, try to accept it. Before they die, the person you’re caring for will get very ill. Try to be prepared for this, as it will be upsetting. It’s a good idea to ask lots of questions, so that you know what to expect. If they get very ill, or if your family decides that they can’t cope or need a break, the person may go into a hospice. A hospice is a bit like a hospital. They have special nurses who provide pain relief for the person who’s ill, and who help the person and their family cope with their feelings.
Some hospices will let you stay overnight from time to time. If you’d like to do this, ask one of the nurses whether this is possible.
At this stage, you’ll have some very difficult decisions to make, and talking to the nurses and doctors can help you with this. Nurses who provide palliative care (special care at the end of life) to people with cancer will know what you are going through, and they can help you make sense of what’s happening.
People may think that, because you’re young, they need to protect you when someone dies. In our experience, that is the worst thing to do. Some of us felt our family took away our choices. We weren’t allowed to make decisions for ourselves, and that was really frustrating. If this happens, a young carers’ worker could speak to the hospice or hospital staff for you.
Be honest with your family about what you want. If you want to be there at the end, make sure that people know that and that they respect your right to do so. If you’d rather not be there, that’s okay too.
When it happens
If you’ve decided that you want to be there at the end, knowing what to expect can help to prepare you. When someone is dying they can often still hear you, even if they can’t respond, so keep talking to them.
The moment of death is not always recognisable, but there are some physical changes or actions that you may notice. You won’t know how you’ll feel until this happens. Some people say they feel relieved that the pain and suffering is now over.
Your family will usually start planning the funeral within a couple of days. You may have a funeral director, or a vicar or other religious leader, come to your home. They’ll want to talk to you about the person, and share your memories. You may find that this helps you feel better, because you’re talking about the good times you had.
If you want to get involved with the funeral, make sure you tell your family. It may be that you’d like to read a poem, do a special reading, or simply talk about the person. Tell the person who’s responsible for planning the funeral that you’d like to do this.
You could also help choose the music. Or perhaps there’s a special wish that the person had that they told you about – make sure you let someone know.
If you don’t want to go to the funeral, or you’re not allowed to go, there may be other ways that you can say goodbye. Perhaps plant a flower or a tree. You could tie a message to a balloon and let it go. If there’s a special place the two of you used to go, perhaps you could visit and say a few words.
What happens now?
When it’s all over, life at home can feel really flat. This is especially true if the person who has died was being cared for at home.
Before the person we were caring for died, some of us had nurses coming around to help out, or other family members coming to visit. So it felt very quiet for a while until we adjusted to the new situation.
Give yourself plenty of time and space, and don’t put too much pressure on yourself.
You may worry that you can’t talk about the person who has died to your family, in case it upsets them. Make sure that you do find someone who you can talk to. It could be someone at a cancer support group, or a trusted friend. Maybe you could talk to a young carers’ worker or a counsellor. Just make sure you don’t bottle your feelings up. You may also need to sort through the belongings of the person who has died. This can be very upsetting, and feel very final. You might not want to do this for a while. That’s okay. Make sure you talk to the rest of your family, and try to come to an agreement about when would be a good time.
If there’s anything you’d like to keep, such as a watch, a ring or photographs, then speak up.
The most important thing to remember about grief is that it affects everyone in different ways.
Some people cry a lot. Other people keep themselves busy. Try to understand that everyone will cope in their own way. Your grief is unique to you. It may come and go in waves. You’ll have good days and bad days.
Some of us found it helpful to get back to our usual routine quite quickly. But a few of us took a long time before we were ready to face the world again.
Try to make sure that you don’t cut yourself off from life. It can be harder to adjust if you’ve been out of school or college and away from your friends for a long time.
I used to talk to my mum after she died. It helped me. I still talk to her now – I know she can hear me.
If you feel that you want to stay connected to the person who’s died, there are lots of ways you can do this. Write them a letter. (It might sound silly, but it works.) Or perhaps you could put together a memory box. Maybe there’s a favourite photo that you could put in a frame.
Don’t be afraid to talk about the person you’ve lost – you might want to tell little stories or talk about their cancer. And don’t worry if you go over and over the same stories – it’s good to remember.
Eventually, your grief will lift. You’ll have fewer bad days. And you’ll start to feel like a normal person again.