Preparing yourself
The first step in this challenging journey is to allow yourself the space to process the fact that your child is at the end of their life, and to contemplate what comes next. Consulting with your child’s doctors, and doing your own research by seeking information from reputable sources, will empower you to better understand how your child's condition might progress and feel more prepared for what is to come.
Reaching out to your own network of trusted friends, family and care professionals can also be a great support for you and your family at this time, and in the future.
Understanding grief
If your child has been placed on palliative care or given a terminal diagnosis, the emotions and feelings you may be experiencing can feel overwhelming. This complex mix of emotions is a natural part of grief, and it is crucial to take time to process your own feelings first before offering information or support to others. Our guide on grief offers additional insights and coping strategies you might find useful at this time.
Honest conversations may be painful but they will be important to you all during this challenging time. Talking openly with your child and letting them know they can ask you any questions they might have will allow them the space to express their feelings and wishes, ensuring they feel heard, respected and safe. Being clear with your child about what is happening as far as you feel is appropriate, using simple, direct language, can also help to reduce any confusion and fear they may be experiencing and support them to feel more comfortable.
Other people around you will want to support you too, and keeping lines of communication open with friends and family by updating them on your child's situation can help them feel involved. Anything that reduces the stress on you during this time will be beneficial. Asking someone close to you to create a group chat or take the responsibility for making certain phone calls can spare you from having to repeat difficult information and alleviate some of the pressure this can cause.
Whilst your experience is of course unique, involving your child in any decisions about their final steps as far as possible, and focusing on those choices that bring them the most comfort, will likely feel most supportive. You might be considering which setting for their end-of-life care feels right to you all, talking about whether this should be at home, in a hospital, or a hospice setting. Your child's comfort and your capacity to manage during this time will be guiding these decisions, and talking things over with your professional care team can help you get clear on what is best for everyone.
Anticipatory grief, or grief experienced before someone’s death, is a hugely challenging mix of emotions for a young person to deal with, and supporting your other children to process what they are feeling about the expected death of their sibling will be important. As their parent, you can help your children to navigate their feelings by ensuring they feel able to ask questions, and express and safely process whatever comes up for them.
You can also create opportunities for your children to connect, enjoy their remaining time together and create positive memories, as well as providing space for them to say goodbye to one another, ensuring they feel able to express their love and emotions at every stage. Specialist organisations and bereavement charities have more advice on how to facilitate these important moments for your children.
Whilst contemplating funeral arrangements will be excruciating, making these important decisions in advance and having certain practical steps in place will allow for a smoother transition when the time comes.
You may be entitled to financial support to help with the funeral costs. More information on this is available here, and in our article on Practical steps to consider at the end of life.
Remembering your child
As you talk to your child during the end of their life, it can be very comforting to them to hear what you will be remembering and celebrating about them. You might share with them the special memories you have, and together you might explore ways to celebrate them at anniversaries and on special occasions, encouraging your child to share suggestions as to how they would like to be remembered. You will always be their parent, and talking with your child about the ways you will remember them honours the love you share that will continue beyond their physical presence.
Self Care
No one can ever fully prepare for the emotional challenges of losing a child, and your experience will be uniquely yours. Whilst it might seem almost impossible to focus on yourself in any positive way during this time, incorporating self-care into your routine early on is important; this means ensuring that your physical needs are met, seeking support when you need it, and allowing yourself important space for processing your grief.
This will not only support you to be more fully present with your child during the end of their life, but also more able to experience the extremes of emotion to be expected before and after their death. Our guide to managing difficult emotions and articles on self care offer strategies that might be useful to you here.
Accessing Support
If you are preparing for the loss of your child, it is important that you know you are not alone, even though you may feel very isolated at times.
As well as the support of your family and friends, the support offered by a hospice, hospital and your care team can be a huge comfort, and reaching out for help when you need it is important. Bereavement organisations, child loss charities, and carer organisations are also there to offer emotional support during the end of life process and beyond.
Accessing the support available as early as possible during this deeply personal and intensely emotional journey means that you and your family will have a strong network to draw on when you need it most.