Children Dealing with Terminal Illness

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This is the most difficult topic I have researched, but it needs to be discussed in order to help children and parents come together as a family in dealing with the potential death of a child. The idea of children dealing with a terminal illness or disease is difficult for all of us to talk about. A child should never have to deal with any situation alone, especially their own death.

If you are a child with a terminal illness no one can really understand what you are going through. People, even your parents, may say "I understand", but that is not a comfort to you because you know there is no way anyone can understand your emotions during this time. It is important for you to talk with your parents about ALL of your thoughts and emotions. They are hurting for you and need to help you deal with this terrible situation.

For you parents who are trying to deal with the thoughts and emotions of your child dying, let your child know they are not alone. Listen to their thoughts, give them lots of hugs, make their time with you full of happy experiences, and finally, show them you love them and do all you can to fill your life with good memories with them you can enjoy for many years after they are gone.

Finally, for those of you who have a brother or sister with a terminal illness, let them know you love them and are there for them. They are scared and feel all alone. They need you for strength and comfort. They will come to before they go to their parents. I urge you to stay strong and build up your sibling, because after they are gone you will be able to draw your strength from what you had done for them.

I have tried to put together a list of websites and resources for both children and parents to help all of you to understand and cope during this traumatic time.

*NOTE: This website and the resourses we list here are not meant to be used by themselves. We always recommend seeking professional assistance in all situations that call for it. The information here is only to help educate you, as best we can, to find what ever help and encourgement you need. I apologize for the limited amount of websites and resources on this subject. There doesn't appear to be much out there to help and give comfort to children who are suffering through a terminal illness. As I find more information I will put it on here.


The information below was borrowed from http://www. ifishoulddie.co.uk/terminal _illness.htm.

Terminal and Life-Threatening Illness

Many people learn that they are suffering from a terminal or life-threatening illness from a doctor, at a stage when they may still feel only a little unwell and the idea that they may be going to die is completely unexpected. Most of us remain completely unprepared for our own deaths and the shock of having to confront it, particularly if you are younger, maybe with a dependent family, leads to a turmoil of emotions and feelings.

Everyone has to find their own way of coping and whilst everyone handles things in different ways, the reactions and range of emotions and feelings of most people can follow a fairly typical path. By understanding and acknowledging these wide ranging emotions, it can help the sufferer, their carers and friends and family to cope with the situation. It also gives an opportunity, however painful to plan, prepare and say goodbye.

1. Shock and Disbelief

Like a bereavement, the first reaction is usually one of disbelief - the feeling that it is all some terrible dream. This is a very normal response for both the person who is ill and those closest to them and may last for several days or even longer.

2. Denial

The shock of the initial diagnosis usually gives way to denial for both the person who is ill and those closest to them. They may try and get on with their lives and convince themselves that nothing is wrong. This period also helps to give time to come to terms with what is happening and cope with the range of emotions they will be feeling. Again, this phase may last days, week or months and occasionally people may refuse to accept the situation to the very end.

3. Anger and Grief

Acceptance of the diagnosis and the situation may introduce feelings of anger, sometimes directed at the doctor giving the bad news or the people providing daily care. There may also be a sense of grief for what is being lost - the healthy, happy years that are past and the lost years of the future, particularly when people are younger and may have young children The carer may also experience these emotions, sometimes tinged with guilt and even relief that they are not the one with the illness..

4. Fear

Most people have a natural fear of death, as well as fear of the pain and symptoms of the illness they have been diagnosed with. In addition, there will be fears about what will happen to partners and family after their death, particularly if dependent children are involved. People with a terminal illness, as well as often their carers, need someone to talk to about their feelings and fears. Towards the end of the illness, some people are able to come to terms with their own death and may be able to make positive plans, such as what type of funeral they would like. Others never reach this sort of acceptance.

Helping People with Terminal Illness

The diagnosis of a terminal illness creates great feelings of powerlessness and lack of control. There are a number of positive ways that can be taken to help and support the terminally ill person and their carer, which will help increase the feeling of taking control. The following ideas have been adapted from books by Dr Robert Buckman 'I Don't Know What to Say' and 'Caring For Someone Who Is Dying' by Penny Mares.

* Accept your relatives feelings and be prepared for them to want to cover the same ground again and again. There may also be sharp swings in mood and outlook which is a reflection of part of the process of coming to terms with what is happening.

* Acknowledge and recognise your own feelings. Try and sort out the feelings that are helpful from the ones that are not so helpful.

* Encourage your relative/ friend to talk about their feelings and try to be open and honest about your own. You may find it hard to know what to say - most people do - but just showing that you want to listen and understand is a way of giving support.

* If you find it very difficult to talk openly to each other, encourage your relative to find someone she can open up to - perhaps another member of the family, a friend, or a doctor or nurse.

* Encourage your relative to draw on the strength of her own past experience, to think back to difficult and threatening situations that they have coped with and to use this strength to face the illness.

* Work out the most practical way in which you can help. Avoid the temptation to rush in and take over with help that you can't keep up in the long term.

* Let your relative make the decisions, don't make them for him or her. Find out what they want to do and let them take the lead in deciding what support they want.

* Being there may be more important than doing things. Rushing around may help you to feel better but your relative might rather have your company for a couple of hours.

* Get more information. People who are under a great deal of stress find it very difficult to take in information. You can help your relative understand their illness, ask questions when they want to know more and make informed decisions about treatment or care.

* Try to help the carer, by making sure they don't become isolated and that they have access to and accept the help that is available.

Some Thoughts For Positive Action From People Facing Terminal Illness

1. Establish some goals to help yourself achieve something each week

2. Plan some things to look forward to in the longer as well as shorter term

3. If you haven't done so already, make a will and arrange your financial affairs

4. Discuss any worries you may have about pain and symptom control with your medical carers at an early stage.

The Carer

Terminal and life- threatening illness means that the carer may have to take on many of the roles and responsibilities that the ill person an no longer manage alone, such as cooking or caring for children. Both parties may find this frustrating and upsetting, as well as the increasing dependence of the ill person. The main carer may also have less time to spend with other members of the family, and other family members may have to take on additional responsibilities such as chores and helping in the home.

Coping with conditions such as incontinence can also be difficult for both the carer and ill person and the illness may also cause loss of physical or mental faculties and alter behaviour or personality.

Carers may begin to feel worn down by the daily demands and feelings of frustration and resentment are very common. The extra responsibilities placed on the whole family can put a huge strain on the whole family.

As the illness progresses, the ill person is likely to become more dependent on other people for the help and care that they need.

* Look after yourself and your own health. Try to get enough sleep and rest and talk to your GP or nurse about getting enough support and breaks from caring.

* Try to make some regular time for yourselves as a family, away from the person you care for. Try to talk openly about the situation and everyone's feelings.

* Be flexible and be prepared to change your plans. It may be necessary to get more help with the caring than you had originally planned and this should not be seen as a failure.

* Think ahead and plan for the time when you may not be able to care for your relative at home.


Care of the Terminally Ill Child - Psychosocial Needs of the Dying ...
The child with a terminal illness has the same need for love, emotional support, and normal activities as any person facing death. ...
http://uuhsc.utah.edu/ healthinfo/pediatric/ terminallyill/psyneeds. htm

CALM | What's Doing your Head In?
They can also help you find a way of speaking to those closest to you. ACT ACT is the Association for Children with Life Threatening or Terminal Conditions ...
http://www.thecalmzone. net/whats_doing_your_head _in/Article.aspx?id=25

American Academy of Pediatrics National Center of Medical Home ...
Experiences of Families in Which a Child Has a Prolong Terminal Illness: ...How to help these children through the time of their sibling's illness and ...
http://www.medicalhomeinfo. org/publications/palliative_ fam.html

Physical Needs of the Dying Child - Lucile Packard Children's Hospital
Many people believe that if a person has been diagnosed with a terminal illness, they must be in pain. This is not necessarily the case, and, ...
http://www.lpch.org/ diseaseHealthInfo/ HealthLibrary/terminallyill/ needs.html


If you are a teen with a terminal illness and need answers or just another teen to listen to you, check out this website. They may be able to help you find what you need. Maybe you just need answers from another teen to your questions about anything?
Go to the following website:
OnYourMind. net: Peer support, chat, information and help...
So, what's on your mind? We're a non-profit web-based organization from teens, for teens that can provide support and referrals through an online chat, ...
http://www.onyourmind. net/

Books on Children Dealing with Terminal Illness!





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