Healthy eating 

It can be  difficult to find time to maintain a healthy diet but it can give you more energy and protect you from illness. Some easy and quick ideas include grabbing a piece of fruit or a handful of nuts instead of a biscuit as a snack. It is important to accept help from friends and family when they offer. It is okay if they go to the shop to buy you salad/fresh foods when it is difficult for you to get there. 

Stay active

When possible, try to get some fresh air and sun each day. If you have a family member or close friend that is able to sit with your child (even for a short time) it may give you a chance to take a quick walk around the block. Not only is this a good way for you to get some physical exercise, it can also clear your head and reduce stress.

Sleep 

Caring for a sick child often means many disruptions overnight because of your child’s care needs. It is important to take any opportunity you can to get some sleep. It is also a good idea to talk to your palliative care team about some of the reasons why your child is unsettled during the night. The team may have some ideas or interventions that may help with reducing some of these disruptions. 

It is often difficult to get a good night sleep when feeling stressed and there is a lot on your mind. It can be helpful to talk to family, friends, your GP or other medical teams caring for your child or writing  in a journal can help process everything your mind.

Build a healthy support network

This could include family, friends, work colleagues or members of your child’s care team who can all provide support and a listening ear. Sometimes family members may not be close by. If you feel that you don't have a strong support network it is important that you let the palliative care team know. They may be able to offer some support and ideas to reduce the isolation you are experiencing.

Organisation

Use a calendar or diary for medical appointments and other family commitments.  Have a list of important names and phone numbers at hand, as well as copies of important documentation that can easily be accessed. This can help you feel less overwhelmed.

It may help family and friends to better support you if you keep them up-to-date about any relevant changes to your child’s health. It is okay to reprioritise less important work and ask family/friends to help with cleaning and housework. 

Respite

You may have heard some of the teams caring for your child using the word ‘respite’. This means to take a ‘rest’ or break away from your usual daily activities.  There are different forms of respite and it is worth considering making some form of this a regular part of your routine.

This might include five minutes for a quiet coffee or tea, participating in a hobby, going for a walk or sitting in the sun. Ask others to relieve some of your additional duties so you get this important rest time. 

A visit to Bear Cottage in Manly, Sydney for a change of scenery is available for families caring for a child with a life limiting illness. Bear Cottage has a team of experienced staff (including medical) to help care for your child and allow families to take a break.  A visit to Bear Cottage can be organised by your palliative care team. 

Maintaining the family and daily routine is important for everyone when caring for an unwell child but this isn't always possible. For example, parents changing work hours because of the increasing care requirements of their child.  

Caring for your child can be rewarding, and give you purpose.  At the same time it can also be emotionally and physically draining. Carers who are able to maintain a routine, and include activities that give them enjoyment, relaxation and a break, cope better on a day-to-day basis.

Additional support will be needed during a hospital admission or when other significant changes occur throughout your child’s illness. Open communication with your family and support networks is important so others have an understanding of your changed circumstances. The following are some ideas to help you look after yourself when your child is in hospital:

• Have family/friends bring you healthy meals and snacks, or pack a lunch-box with health snacks for the day 
• Ensure you take breaks like going for a coffee, sitting outside or going for a walk.  Let staff know your plans so they can check your child more regularly or can arrange for a hospital volunteer to sit with your child while you are away 
• For longer breaks, use family members who might be able to stay with your child while you take some time away from the hospital
• Use the services available within the hospital e.g. volunteers, psychosocial support.

While there are a range of feelings that are normal when your child has a life-limiting illness, it is important to be aware of when you need more support:

• when fear, worry or stress are severe and/or continue for more than a couple of weeks
• when feelings are preventing you from sleeping, eating, spending time with your child or others, or you’ve lost interest in things you’ve previously enjoyed.

If this is the case, speak to a staff member, GP or counsellor.