Things you can do to take care of yourself
It can be very difficult to find time to maintain a healthy diet. However a healthy diet 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. Fresh salads are also easy and require little cooking time. Many supermarkets offer a range of ready-made salads. It is important to accept help from friends and family when they offer. People often feel helpless when they see their friend or family members suffering. Therefore going to the shop to buy you salad/fresh foods when it is difficult for you to get there, would be a practical way for them to help.
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.
This can often be a challenge due to the following reasons:
Caring for a sick child often means many disruptions overnight because of your child’s care needs. These overnight responsibilities may include setting up equipment for feeding, suctioning, administering medications or providing comfort to your child. It is important to take any opportunity you can to get some sleep. If friends or family members offer you time for a nap during the day, take it!!. 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 that will allow your child and other family members to get a better night sleep.
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 to discuss particular concerns that are keeping you awake at night. Sometimes writing your thoughts and feelings in a journal can help process and clarify your concerns which can help to quieten 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.
Be organised and prepared: 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 others to better support you if you keep them up-to-date about any relevant changes to your child’s health. This could include:
- School community
- Extra-curricular coordinators e.g. sporting, music, youth group
Children are very good at “living in the moment”. There will always be happy times during your child’s illness. On the days when your child is feeling well, take a moment to fully savour this time and store it in your mind as a treasured memory.
Do activities that bring you some happiness. This might be protecting 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.
Reprioritise less important work and ask family/friends to help with cleaning and housework.
Rest is important
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. Respite can include:
- A visit to Bear Cottage in Manly, Sydney for a change of scenery that 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
- Have a family member, friend or volunteer spend time with your kids while you recharge
SELF CARE WHEN YOU ARE AT HOME
Maintaining the family and daily routine is important for everyone when caring for an unwell child. This being said, there are often significant changes within the family, 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.
SELF CARE WHILE YOUR CHILD IS IN HOSPITAL
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. This could be 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