Whether you are a parent, grandparent, aunty, uncle... you are welcome here. Losing a child or young person to cancer affects all the family. Everyone's grief is different but you are not alone. We hope that the information provided here will help you to take care of yourself and your family and honour the memory of your child - always.
For Parents: Down the track
Grieving for your child is a lifelong process and some parents comment that, for a while, it gets harder. For the first two to three years after the death of a loved one, grief can be acutely painful but do remember that, for most people, adjustment occurs over time. So be patient and gentle with yourself.
All grief tends to be a roller-coaster; there are good days and bad days. The research we have done shows that healing is more about adapting to the loss and growing stronger through the grief journey than ‘getting over’ the death of your son or daughter. Lois Tonkin's work might give some parents insight into this process of growth.
Some of the emotions you might experience during later bereavement are similar to early bereavement, remember these can change, shift focus, fade or intensify depending on what is going on in your life and where you are at in your grief journey. Knowing about this 'mix' of emotions and having some strategies to deal with them can help. Remember that there is no 'time limit' on grief but do seek professional advice if any of these feelings persist and/or create relationship problems. There is some information on this site about when to seek help.
Anger is a very normal and common response to the death of a loved one and can be an enduring emotion. You will most likely have thought “why me?”, “Why my child?” on more than one occasion during your child’s treatment. The loss of your child focuses this sense of unfairness even more. We also tend to direct our anger in the form of blame towards ourselves or others; partners and other relatives, doctors and other health professionals. If you have a religious faith you might blame God, Allah or other Divine being. You could feel abandoned by your faith, especially after praying hard for your child’s recovery. In other respects you may find that your faith gives you strength and guidance at this time.
Dealing with anger
Feelings of anger are most intense earlier in bereavement and generally fade with time although it needs expression. Whilst uncontrolled anger can be extremely destructive, ‘bottling up’ feelings of anger can lead it showing itself in different ways, it can turn to bitterness and despair. Recognise first of all that anger within your grief is normal. It is also an energy that you can use positively or negatively.
For men, there are helpful guidelines around managing anger at http://www.menslineaus.org.au/Managing-anger.html. For everyone, writing down the things that anger you or expressing it via painting or drawing can help - remember, you dont have to show anyone your journal or art if you don't wish to - they are just for you.
Guilt is a form of self-blame. You will probably feel hurt at all the times you did not spend with your child that you might have and all the times you perhaps became cross or lost your temper with your child. You might regret events in your life when your child was alive - “if only I had done this”, “If only I had said that”.
Dealing with guilt
Although some self-help gurus counsel that we should live every day as if it were our last, very few of us do. It is not realistic; a part of our lives is to plan for the future and to assume that life will continue, particularly for our child or children. The dynamic of any human relationship and any human life is rich and full of history. There are good times, bad times, love, joy, hurt and pain. This is the nature of life. The fact that we cared for our children and other loved ones as best we could at the time is enough. Remind yourself of this - often.
In addition, the cancer treatment journey in itself is traumatic and exhausting for families. Shock, tiredness, apprehension and exhaustion do not always bring out the best in people. Whilst treatment is underway, many families are in ‘survival mode’ making it through each day as best they can creating as much ‘quality time’ as they can together. The fact that you were there for your child when they needed you is of most importance and you need to keep reminding yourself of this.
Despair is generally understood as the opposite of hope. After pining and longing for your child, you can often feel feelings of despair when you realise that your child will never return and physically share your life with you. Despair is a very draining feeling, you can lose interest in life and in those people around you.
Dealing with despair: Restoring hopefulness
You can encourage small green shoots of hope to grow back by making yourself see positives in life - any small positive event that happens or anything beautiful that you see, say it out loud to yourself e.g. “that is a beautiful sunset”, "that was a good conversation with my husband/wife/friend". Feelings of despair generally come and go. Family and friends who are close to you and who love you will care for you at this time although it is important to share how you feel with them. If you live alone however, or do not find comfort in a supportive relationship with a partner, relative or friend, this is a good time to seek out a support group or counsellor who will allow you to express your feelings and be beside you at this stage of your journey.
People often feel fear and anxiety in grief. You might feel ‘panicky’ or experience nightmares. You might worry about the health of others whom you love. You might fear that you are losing control or breaking down. Some people experience post-traumatic stress symptoms as part of their grief, which can be sustained during their child's treatment journey. There is some basic PTSS information on this site.
Dealing with fear
Controlled breathing can often help with fear and anxiety. There are a range of different relaxation tapes for purchase but even some soothing classical music can help. Alternative therapies such as massage can help release muscle tension. Gentle regular exercise and having daily self-care routines can really help your body deal with anxiety, make you feel more secure and help to promote natural restfulness and healing sleep.
Building a memorial
There are now memorial websites where you can set up memorial pages for your son or daughter; Caring Bridge and Care Pages can facilitate the creation of a free memorial web-page for your son or daughter. Other activities by bereaved parents have included the setting up of memorial prizes in schools and universities (these dont need to involve a lot of money - it's the honour of the prize that counts for the recipient), planting trees at home or in community settings, dedicating a play equipment to a nursery or school (via negotiation)... there are lots of options to think about.
Building a 'New Normal'
Some parents talk about the process of re-establishing themselves and the family in the world after the loss of a child as building a 'New Normal'. Life can never be the same. There is a new life to build; a different way of living which still embraces the memory of your deceased son or daughter. The work of Phyllis Silverman can provide a useful perspective as she emphasises sharing and communicating with others who have experienced a similar loss and/or supporting a charity or good cause as a volunteer. One positive effect of doing this is that it helps you to 're-populate' your life with new acquaintances and friends on the road to discovering new meaning in your own life and in that of your deceased child.
References and resources
Poetry as therapy http://www.spcsb.org/pdfs/resources/a-poetry_as_therapy.pdf
The Australian Creative Arts Association http://www.acata.org.au/find_a_therapist.htm
Other links for bereaved parents:
There is a special brochure published for parents whose children who have died following prolonged illness
“Growing around grief”, Lois Tonkin (1996) describes a process where the pain of grief remains but the bereaved person can become stronger in coping with their feelings and personal growth occurs.