Parents may struggle with their own feelings about the child’s illness while trying to keep up a brave front for the child. This is entirely normal and nothing to feel selfish or upset about. You may find that you experience a sense of grief or loss for the way you had envisaged you child’s childhood if it will not be the same. Grief is also reported in relation to loss of how life used to be, as well as loss of a future. A loss of spontaneity with restrictions on activities may also create a sense that things will never be the same again. It is incredibly important at this time that you speak about your emotions surrounding the situation. Bottling things up and keeping going until you burst is not going to help anybody. The following organisations can provide support in these circumstances.
The most important thing to remember is that whilst these are feelings which can hopefully be rationalised, they are still your feelings and are no less valid than those of the people around you. You need to give yourself a break and not shoulder the burden of the whole family. No one is trained for this and everyone is muddling through together so you do not need to have it all together all the time!
GIVE YOURSELF A BREAK
The most important thing to remember is that, whilst these are feelings which can hopefully be rationalised, they are still your feelings and are no less valid than those of the people around you. You need to give yourself a break and not shoulder the burden of the whole family. No one is trained for this and everyone is muddling through together so you do not need to have it all together all the time!
ASK FOR AND ACCEPT HELP
Accepting help with transportation, meals, childcare, and other daily activities can take some pressure off of you so that you have the emotional reserves to be there for your family. Accept help so that your healthy children can stick to their typical routines as much as possible, you'll also be teaching them a valuable lesson about accepting generosity from others.
DON'T LOSE YOURSELF
Divorce is inevitably more common in families with chronically ill children, mainly because of the great stress of parenting an ill child. While your child will need at least one parent with them during times of acute illness or hospitalisation, it is important for you to find at least short times now and then to spend alone with your partner. It is not selfish for you to do this but instead helps to strengthen your relationship and therefore be a stronger unit for providing support.
Siblings of the ill child can experience a range of emotions including but not limited to:
- Guilt that they are not sick ("Why him and not me?")
- Wonder whether they might have caused their sibling's illness
- Anxiety about becoming sick themselves
- Jealousy of the family's attention
- Guilt at the negative feelings or thoughts they have towards their sibling
- Angry if they are asked to assume more household chores than their sibling with a chronic health problem
- Guilt when they resent the additional responsibility with which they are tasked
You have to help them understand that it is OK to feel sad about the situation, and that together you can all make it better. Denying a child his or her own feelings can be difficult, it is far more productive to help them understand these emotions and talk about them openly and honestly.
Try to maintain continuity and treat your children equally. Stick to existing rules and enforce them; besides reducing jealousy and guilt, this also sends a strong optimistic message about your ill child's prognosis.
RESERVE 'SPECIAL' TIME
Whilst it is inevitable that you will have to spend more time with the ill child (this is not for you to feel guilty about, circumstance dictates it), it is important to set aside a small amount of time, even just 10/15 minutes, to focus on spending with each sibling. This will show them that they are no less loved and are just as important. Never forget, it’s OK to have fun and laugh it will help to strengthen the bonds between you.
BE HONEST AND OPEN
Families who take the approach that the chronic illness is a condition not a definition, have a greater level of success, working together to face the new responsibilities of managing a long-term illness. It is important to maintain a policy of openness and honesty with regards to the chronic illness. Keep in mind that siblings need to have honest information about the condition and to have their questions listened to and answered. This can be difficult when you're exhausted, stressed, and away at the hospital or clinic for long periods of time, but a little attention and conversation can let your healthy kids know that they're important and their needs matter. Try not to fall into the trap of relying on healthy children as caregivers before they're ready.