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Helping Kids with a Terminally Ill Sibling

By: Elizabeth Grace - Updated: 22 Aug 2018 | comments*Discuss
Terminally Ill Child Death Of A Sibling

Parents who are caring for a terminally ill child are often overwhelmed with emotion, yet if they have other children at home, they must somehow find the time and energy to help the entire family to cope. Children often share special bonds with their siblings and the loss of one child is sure to impact siblings in ways that they will carry for the rest of their lives.

Explaining Death to Children

The death of a loved one is always traumatic, but the death of a child is almost unthinkable. Parents of terminally ill children are often faced with countless questions from not only the ailing child, but from their other children, as well. Unfortunately, many of these questions may be hard for parents to address since it is unlikely that even the parents fully understand or have accepted the reasons that their child’s life will soon end. All parents hold special hopes and dreams for their children, but sometimes, those hopes are dashed by the diagnosis of a terminal illness.

If their children express the need to understand the specifics of the illness and prognosis, parents should address all questions in an honest, straightforward manner. Information needs to be tailored toward each child’s ability to understand and cope, of course, so parents may wish to dole out information based on their kids’ ages, temperaments, and levels of maturity. It is important that children be given factual information, though, and that they understand that all of their concerns will be addressed; even when nothing is said to them, children will understand that something is terribly wrong, so parents must not pretend that everything is alright in the hope that they can protect their children from the harsh reality.

Allowing and Encouraging Expression

Children, even young ones, are often quite perceptive and may try to bottle up their feelings in order to spare their parents and other family members undue stress, but doing so is unhealthy. Emotions are bound to find their way out in one form or another, so when their families are in crisis, kids may act out, withdraw, or experience signs of depression, including appetite changes, exhaustion, or feelings of being unwell. Parents can help by encouraging their kids to freely express themselves, even when it is difficult for them to do so. If they are hesitant about opening up at home, children should be encouraged to talk to a trusted friend, teacher, counsellor, or member of the clergy. Providing kids with outlets for their feelings and anxieties can help them to better manage the stress that they are experiencing.

Making Time for Siblings

When a child is seriously ill, it is perfectly natural for parents to want to lavish all of their time and attention on that child’s needs, but siblings need some of their parents’ interest, too. When one member is ailing, the whole family suffers, each in their own way. Children need their parents to provide some sense of normalcy, and they yearn for reassurance from their parents that they are important, too. The tendency to focus solely on a sick child is never intended as a slight to the other kids in a family, but children do not yet possess the maturity to understand that their parents are simply overwhelmed – they need at least short bits of time that are dedicated to them. Ideally, parents can arrange for respite care, allowing them to spend some uninterrupted time with their other children, but if that is not possible, setting aside a few minutes each day to listen or play a game can help enormously.

Alleviating Children’s Fears

Illness and death can be frightening concepts, even for adults, but for children, the death of someone close to them undermines their sense of security and safety. While parents cannot honestly assure children that they will never again be faced with the loss of a loved one, they can and should try to alleviate their children’s fears. Children may fear that other family members will die, or they may for the first time in their young lives, consider the possibility of their own death. Parents can expect some fear and maybe even anger from their children, who are just trying their best to cope with an unthinkably difficult situation. If their children seem to have an especially hard time with the illness and/or death of their sibling, parents may want to consider seeking professional advice from a child psychologist or grief counsellor.

The diagnosis of a terminal illness impacts many people – the ailing patient and all of those who love them. When the patient is a child, the pain may be even deeper and the situation harder to accept, but the other children in the family need all of the help and support that they can get in order to come to terms with the loss of a beloved sister or brother.

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My twin sister was born with cerebral palsy and we will be turning 16 this year. Two months ago she fell ill with the flu and everything went downhill from there. Just to put it out there, my family and I are Christians, so we have trusted for a miracle ever since she was born. There was no medical reason we should’ve survived after being born three months early. The flu she caught progressed into bronchial pneumonia and pneumonia only later on. She was scheduled for a pace maker and a gastric tube procedure, as well as comfort care (care to make a patient as comfortable as possible in their last days before passing away). But she started to get better until she had a massive seizure. She was admitted into High Care and left her normal ward after being in and out of ICU for two weeks. The doctors had no idea what she had until they ran more tests, finding that she had a very uncommon disease called diabetes insipidus. She is now in High Care and scheduled for a gastric tube again due to neurological deterioration. Through all of this, we’ve learnt to trust in God and keep hoping. Even if she may die or she may receive a miracle, we will have peace either way. And we have to be strong for her and be there for her and stay healthy for her. To anyone also suffering from seeing their sibling or parent or grandparent go through stages of an illness that can’t be treated, if like to encourage you to never give up and to be there for them and carry on to the best of your ability. As a Christian I believe God has a plan for all of us. Don’t give up just yet and keep the faith! Anything is possible after all ?? -Nini
Nini - 22-Aug-18 @ 2:11 PM
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