caring for siblings of a very sick child

Caring for a seriously ill child takes a tremendous toll on the whole family, physically, mentally and emotionally and your healthy children are no exception. They too suffer from lack of your time, and may feel resentful and angry about the time, energy and focus that naturally has to go on to their sick brother or sister. This can then lead to feelings of guilt as they try to process their mixed emotions.

As parents, your exhaustion, stress, and uncertainty about how to respond to the needs of your other children can leave you feeling guilty and running on empty — and might even find that you begin to downplay or ignore the impact your child’s illness may have on your other children.

By being aware of what healthy siblings are going through, and taking a few steps to make things a little easier, you can address, pre-empt and be prepared for some of the issues before they impact on your whole family.

How Healthy Children Feel

Family routines and dynamics naturally change when a child is ill, which can confuse and distress healthy siblings. In addition to the fear and anxiety over the illness, they often experience the feeling of loss of “normal” family life, and loss of their identity within the family.

Many parents fail to take this into account as they are naturally pre occupied and worried about their sick child but I believe it is a vital that you are aware of these feelings as they will have a long term impact on your healthy child’s self esteem & identity.

It’s normal for healthy siblings to:

  1. worry that their sister/brother will die.
  2. fear that they or other loved ones will “catch” the sibling’s disease.
  3. feel guilty because they’re healthy and can enjoy activities that their brother or sister can’t
  4. be angry because you are devoting most of your time and energy to your sick child.
  5. feel neglected and worried that that no one in the family cares about them.
  6. resent the sibling who never has to do chores or jobs around the house.
  7. resent that the family has less money to spend now because the sibling is sick.
  8. & be wistful for the past (wishing things could be like they were before the illness)
  9. feel a deep sense of guilt for being “mean” to the sibling in the past.
  10. experience general worry or anxiety about an uncertain future.

What to Look For

Signs of stress in your children can include any changes in their sleep patterns, appetite, mood, behaviour, and attitude to school. Younger children may pick up on your parental stress and tiredness and often they show signs of regression (doing things they did when they were younger and had already outgrown) eg speaking in a baby voice, wetting the bed, wanting to sleep in your bed, or being more clingy than usual.

Ways to Help – Look Forward.

If you find yourself feeling guilty for not being a perfect parent to your healthy children, don’t beat yourself up — dwelling on the past is not productive or helpful to you or them. Instead, try to make a point of recognising your child’s needs now and make some small changes that will, over time, make a BIG difference to them. It helps to remember that you are building memories that last a lifetime so that will help put how important this is into perspective. I always say that “A smile is a curve that puts a lot of things straight!” So have fun and lighten up too!

Say yes to 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. You’ll also be teaching your children a valuable lesson about accepting generosity from others.

Be patient with regressive behaviour in your healthy children, who may have trouble making sense of their feelings and emotions. At a time when your nerves are stretched it can be hard to stay patient and attentive, but it’s essential for the well being of your healthy siblings. However, it’s not a good idea to let kids — healthy or sick — behave inappropriately or get away with behaviours that you would not have allowed before the illness. Rather than make a child feel relaxed, being too lenient can increase  their anxiety, jealousy, or feelings of abandonment.

Keep to your rules, routines and boundaries, as children feel safer, secure and loved by consistency, fairness and firmness.

Encourage their involvement in a variety of ways, and ASK them how they’d like to be involved — maybe helping with physical therapy, for example, or making cards, books, or videos to keep a hospitalised child connected to their life at home and at school or nursery.

Include siblings in the treatment and care.

Including your healthy children in some of the hospital and doctor visits and therapy sessions can help demystify the illness for your healthy child. They also can benefit from connections to other patients’ siblings as they feel that they are not the only one going through this experience. Also try including and giving your healthy child specific, non-threatening “jobs” that can help them feel like an important part of the treatment process.

It’s OK to have fun.

Enjoying yourself and having fun (for a change) can go a long way toward relieving stress and recharging everyone’s battery. In addition to trying to maintain a normal schedule of activities, whenever possible set aside some time for your kids to spend it having fun with friends and family without focusing on the illness. You also can set aside one-on-one time with your healthy child where the focus is on them and everything that’s going on in their lives other than their sibling’s sickness.

Keep it “normal” as much as possible.

Try to maintain continuity and treat your children equally. Stick to your existing rules and enforce them; in addition to minimising jealousy and guilt, this also can send a strong optimistic message about your sick child’s recovery. And try not to fall into the trap of relying on your healthy children too much as caregivers before they’re ready. Siblings of sick children often look back and feel that they had to grow up too quickly. Be mindful that it could be a burden that you may be passing on. Accept help so that your healthy children can stick to their typical routines as much as possible.

Keep the lines of communication open.

Pay attention to your siblings’ needs and emotions. Encourage them to talk about their feelings — the good, the bad, and the guilt and anger or fear — and try to read between the lines of their actions. I encourage the parents that I work with to become a “Sherlock Holmes” – a detective searching out the meaning behind the action! 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.

  1. While you may not be able to take away the source of your child’s emotional pain, you can help alleviate their stress and make them feel secure, cared for, and supported by listening to them, not just “talking at” them. Find some special “Our Time” with them a couple of times a week – it could be simply playing a game in the garden, reading a book, going swimming or having a pizza together after school. Whatever it is fix a particular day and time as it then becomes a habit, and ring fenced as your “Special Time” together and that’s the important part – it’s regular and they can rely on it.
  2. Even if you don’t see any obvious signs in your children, you can be pretty certain that changes to their routine, and seeing you or your partner or other family members upset is likely to be causing them stress, worry and anxiety.
  3. Pay attention to any changes in your child’s behaviour, and talk to them frequently about how they’re doing and what they’re feeling. The more opportunities that your children have to express their emotions, the less emotional turmoil and fewer behavioural problems they’re likely to have at home or at school.
  4. The way siblings express their needs will vary considerably and also may be dependent on their age and maturity — some may act up, some may try be the perfect child, and many will do both. Most studies find that siblings of children with cancer for example, are not at any increased risk for mental illness, although they may be at greater risk for behavioural and emotional signs of their distress.
  5. Encourage your child’s involvement in a variety of ways, and ASK them how they’d like to be involved — maybe helping with physical therapy, for example, or making cards, books, or videos to keep a hospitalised child connected to their life at home and at school or nursery.

My “Stepping Into The Shoes & Socks” Exercise.

This is a simple exercise I do with parents and children that helps them to see the world from the point of view of another.

Get a piece of paper and write your healthy child’s name on it and pop it on the floor.

Now as you step onto the paper I want you to completely pretend that you are your child.

See the world from their eyes.

Hear the world from their ears.

Feel as they do.

Just relax and breathe deeply and imagine the world from their point of view in all its small detail.

How would they describe the atmosphere in your home?

How would they describe you?

How would they describe your partner?

How do they feel most days?

This is not designed to make you feel bad and to beat you up and make you feel guilty but it’s really a useful way to help you to make a shift or a small change in the ways things are.

So take the learning form the exercise and make some very small changes just for this week and notice the difference.

If you would like me to help give you more clarity, direction or confidence just give me a call so we can sort out some time to explore new ways to do old things on 01883 818329