You are not alone on this journey with your child. Resources are available to help your child and your family. Think of these resources as a scaffold around your family, meant to help keep you strong on difficult days.
The people who are resources to your child will likely include expert physicians, nurses, social workers, in-home health care services, respite providers, hospice workers, school supports, complementary health practitioners, pharmacists, rehabilitation specialists, and palliative care specialists to name a few. These people form your child’s team.
The people who are resources for your whole family include your extended family members, friends, and neighbours. You may also find support from other parents with an ill child, faith community members, online support communities, hospice staff, mental health counsellors, child life specialists and the palliative care team. These people will help care for your child by caring for your family.
Help your team get to know you
Relationships need energy from both parties to work well. You can help by telling healthcare providers how they can help you. You may need to guide, educate and direct them before a truly positive and helpful relationship emerges.
- Tell your team what matters to your child and your family. Tell them how you like to receive care. Tell them if something does not feel helpful.
- Share who you are. Tell stories about your child and family. Help caregivers develop a meaningful and trusting relationship with you and your child.
- Pay attention to the people your child really responds to. Ask to have these people work with your child regularly where possible.
Keep a record
When your child is ill, you will meet so many healthcare providers that it’s hard to remember who does what. It can be impossible to remember names. Collect this information and organize it in a binder or in your phone. This will help you find the information when you need help.
- Learn who is on your child’s healthcare team. Ask what role they play in caring for your child. Ask for and keep business cards or create contacts in your phone.
- Write down what the person says they can help with—even if you don’t need the help at the time. Ask what hours they are available, how best to contact them.
- If you need help sharing your child or family’s values, wishes and decisions with your team, speak to your social worker or to someone on the palliative care team. They can help you communicate to your child’s team at large.
- If you are troubled by thoughts, fears, anxieties, or sadness, speak to a social worker or counsellor. They offer a neutral safe place to talk in a way that may help you feel stronger. They can also provide more information about support services that may be helpful for your child and family.
After a death
- After your child dies, you will no longer see the physicians, nurses, teachers and others who supported and cared for them. This can feel like another loss to grieve. It is ok to contact the team or individual members to check-in or say good-bye. Your child’s healthcare team may offer bereavement resources. If your team doesn’t offer this service, ask your social worker to help you find support.
- You may be overwhelmed by your loss. Remember that you are not alone. You may find support from your faith community, a grief counsellor a bereavement group, or another parent who has had a similar loss.