Understanding GriefA guide for people with cancer, their families and friends.

Coping with cancer

www.cancerqld.org.au

Disclaimer: The information enclosed is provided for educational purposes or for personal use only. Cancer Council Queensland (CCQ) strongly advises this information should not be used as a substitute for seeking medical or health care advice. We strongly recommend that you seek advice from your doctor or treating health care team before making any decision about your health care treatment. Please note that the information enclosed reflects the opinion of the author/s at the time of writing. Every effort has been made by CCQ to ensure its accuracy, however CCQ and its advisors do not accept any liability in relation to this information. This publication is current as at September 2012.

This booklet has been prepared to help you understand more about your feelings when someone close to you has died. We hope this information will answer some of the questions you may have. If you find this booklet helpful, you may like to pass it on to your family or friends.

Introduction

For further information, please feel free to call Cancer Council Helpline 13 11 20, Monday to Friday, between 8am and 6pm.

Grief is about loss..............................................................4

Grief is healthy and normal................................................5

People grieve differently.....................................................6

The circumstances of the death affect your grief...........7

Grieving doesn’t always begin when someone dies.......8

Grieving is up and down....................................................9

Gieving doesn’t last forever but......................................10

How long does it take?....................................................11

Contents

How to manage if you feel stuck or desperate.............12

How does grief feel?........................................................13

Grief is physical too.........................................................18

How can you help yourself..............................................19

Helping children in your family........................................22

What professionals can offer............……........................23

Other resources.................................................................24

Where to go for more information..................................25

Grief is about loss

When you lose touch with someone or something important to you, you feel grief. Most of us think of death when we hear the word grief, and this booklet is mainly about the grief you feel when someone close to you dies from a terminal illness such as cancer.

But losses other than death bring grief with them too. Separation or divorce in the family, ill health, disability, redundancy or retirement, loss of a pet, moving home, accidents, attacks on you or your property, burglary, and fires are all losses. Sometimes the loss is not great and you only grieve for a brief period, but sometimes it’s a very big loss, and you feel it for the rest of your life.

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Grieving is the process of adjusting to your loss and learning to live with the changes it has brought to your life.

Grief is often accompanied by strong and painful feelings that change frequently. This booklet aims to help you understand some of these feelings. Not everything in this booklet will apply to you. You might like to re-read the booklet in a month or so, when more time has passed. The most important thing to remember is that grieving is healthy and normal. It happens to everyone.

Grief is healthy and normal

Grief is healthy and normal 5

People grieve differently

Everyone responds to loss, and shows their grief in different ways. Often, family members mourning for the same loss misunderstand one another’s way of grieving.

Remember there is no ‘right’ or ‘wrong’ way to grieve. Sometimes people find that a death brings back memories of other losses from the past, and they feel they are mourning for those again.

How people experience grief depends on a number of things,among them are:•Your age and gender.•Your personality.•The circumstances of the death.•The support you have from other people.•The relationship you had with the person who died.•The degree to which your life will change as a result of the death.•The losses you have had in the past.•Your cultural background.

Remember there is no ‘right’ or ‘wrong’ way to grieve.

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What happened in the hours and days before your loved one’s death can make a big difference to how you grieve.

If someone was terminally ill with a disease such as cancer, you may have been able to spend time with them, talking about their death and what it will mean. This is often helpful in the months that follow, even though you may feel you could never have been truly prepared for their death. If they die peacefully, you might find you draw comfort from that peace; there is perhaps a sense of acceptance about the loss, even if you feel sad. But a difficult and painful death can stay in your memory for weeks, months or years before it begins to fade.

If the death was very sudden, or happened in traumatic circumstances, it can take a long time to get over the shock and the sense of things being left unfinished or unsaid.

Sometimes a death is expected because someone is terminally ill, but when it happens it still feels like an unbelievable shock, especially if the person has rallied again and again in the past and you have come to feel that they will always ‘pull through’ somehow.

The circumstances of the death affect your grief

The circumstances of the death affect your grief 7

When someone is ill for some time, they and their loved ones often begin to grieve for their death before it happens.

While there may be a lot of attention taken up with caring for a sick person in the family, there is still often the thought: ‘How will it be when they are not here? How will I cope on my own?’

Sometimes people are shocked by how little they feel when their loved one actually dies. At times like this, they sometimes comment that they feel they have done much of their grieving already. This is a normal response, and doesn’t mean they are denying the loss.

On the other hand, sometimes people find they are not unduly affected by their loss at the time of the death, but find it harder as time passes, and they experience their loss in a new way. Again, this is quite normal.

Grieving doesn’t always begin when someone dies

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Grieving isn’t something you begin one day, move through step by step, and emerge unchanged from at the other end. People sometimes speak of the ‘stages’ of grief, but for most people it is an up and down business.

Most find they move through it gradually, but don’t despair if you find yourself at the beginning again and again – that’s normal.

You might find there is a time of day when you miss the person who has died or left most. Or it might be a song, a smell, an anniversary or doing something you used to do together that reminds you of them, and suddenly you feel upset again.

Grieving is up and down

... doing something you used to do together reminds you of them and suddenly you feel upset again.

Grieving is up and down 9

When people find grief particularly hard they sometimes worry they will be this unhappy for the rest of their lives, but for most people it isn’t like that. After a while it doesn’t hurt as much as it did at the beginning, and surprisingly, you will find yourself enjoying things and feeling enthusiastic about life again. For many people, coping with grief doesn’t mean getting over the loss; it’s finding ways to live with it. It’s not that it goes away, so much as the loss becomes part of your life.

Grieving doesn’t last forever but...

For a lot of people, coping with grief doesn’t mean getting over the loss; it’s finding ways to live with it.

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People often expect to be back to normal after just a few weeks or months. Friends and family can add to this feeling with comments such as: ‘Life has to go on. It’s time to pick yourself up and get on with living.’ Often these messages feel like criticism, and you may feel you are being told not to grieve any more.

For many people though, it is at least a year before the loss is no longer a big issue in their lives, and several years before they feel comfortable with it and able to take up the threads of life again. For some, grief never goes away completely, especially if the relationship was an important or long-standing one.

When someone has died, you may continue to miss them from time to time throughout your life. This doesn’t mean it will always feel as hard for you as it does in the early days. It may continue to touch you every so often. Remember it is natural to feel upset sometimes, even when it has been a long time since the death.

Try to be patient with yourself. Many people make things harder for themselves by saying: ‘I should be over this by now’. Don’t expect too much of yourself. Giving yourself time to mourn is the best way to heal.

How long does it take?

How long does it take? 11

Most people have times after a major loss when they feel they just can’t go on any longer. The pain of grief is too hard, or just doesn’t seem to be getting any better. Usually they find if they just ‘ride it out’, in a week or two things do pick up, and they realise there is a pattern of good days and bad days, with the good ones gradually increasing.

But sometimes grieving people begin to feel ‘stuck’ in their grief and become very depressed. Or worse, begin to feel suicidal, as if not going on is a real option for them.

How to manage if you feel stuck or desperate

At times like this it is very important that you look for help from others. Don’t struggle on alone feeling desperate. Professional support can make a big difference. Talk to your GP, or call Cancer Council Helpline 13 11 20, Monday to Friday, between 8am and 6pm to find out about your options for professional support. You can also our section ‘What professionals can offer’ at the end of this booklet.

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Grief is not just sadness. It’s a whole range of feelings and experiences.

Sometimes people are overwhelmed by the intensity of their feelings and wonder if they are losing their mind. If this happens to you, try not to worry too much as this is normal. Your mood may change quickly and often, but that’s normal too.

NumbnessAt first most people feel nothing. They just can’t believe it’s true. It feels like the person who has died has just gone on holiday and one day he or she will suddenly walk in the door and say: ‘I’m home’.

This numbness helps us through the first days and weeks after a loss. Don’t feel you have to push yourself past this. The sense of numbness will start to fade in a few days or weeks, although it may return from time to time. The reality of your loss will become clearer as time passes.

SadnessSometimes you feel like you will never stop crying. You long to see the person so much you don’t know what to do with yourself. At other times you might feel terribly sad but can’t seem to cry, even though you feel you are crying inside.

How does grief feel?

How does grief feel? 13

AngerMany people feel very angry when they are grieving. It’s common to feel angry with God, with the person who has died, with the fact of death, with yourself, with those involved in caring for the person who died, or with the driver in the car behind you for no reason at all. Sometimes there is reasonable cause for this anger, but even if there is not, the feeling can still be there and it is real and normal.

LonelinessLoneliness is very common for grieving people, particularly if someone you have been close to for a long time has died. You may miss having someone around to chat to about the ordinary events of life. It can be very lonely too, when some time has passed and everyone around you has moved on in their lives, but you are still feeling your loss very strongly.

Relief and peacefulnessRelief is very common when someone dies. Sometimes it’s relief that it has happened at last; that this death you have been worrying about for months is finally a reality you can deal with, and you can get back to familiar routines. It’s also normal to feel glad that a person’s suffering is over, or relief that someone you had a difficult relationship with is no longer around, and you can begin a new life. Many people find there were parts of the person who died that were difficult to get along with, and that life is easier without these.

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It’s hard not to feel guilty about this sense of relief. We often seem to be expected to ‘put someone up on a pedestal’ when they have died – but remember that they were human, with good points and bad ones, and you are too. Although you may be surprised by your feelings, they are a normal response to your situation.

Guilt and regretYou may feel guilty about the things you did or wish you had done differently, and there may be regrets for the way things happened in the past. When someone dies we lose the opportunity to change things. Try to remember that no one is perfect. Often, talking it over with someone else helps.

You may feel guilty for joking and laughing, or feeling happy at times. But it’s okay to do these things. We can’t grieve all the time, sometimes we need a break.

Fear and panicPeople often become very fearful when they have a major loss in their lives. You may feel terribly worried about other people you love, or fear for your own safety. Little things that were no trouble to you before can throw you, and you worry about how you will cope.

How to manage if you feel stuck or desperate 15

DepressionSome time after the loss, when the reality of it really sinks in, you may find yourself feeling depressed and unmotivated. A loss of enjoyment in life and a lack of direction or purpose are common, especially if you feel you are taking a long time to come to terms with the loss. ‘Why me?’ is a question people find themselves asking.

RejectionWhen someone dies or leaves, you might feel rejected and abandoned. People with a religious faith may feel that God has abandoned them at a time when they particularly need support. Sometimes too, people feel rejected by the friends they thought would be most supportive, or unwelcome at social functions due to their changed situation. Grieving people are often surprised by who offers the best support; often it’s someone who has experienced a major loss themselves in the past.

Confusion and forgetfulnessFrequently people find they are confused and forgetful, and even getting a simple task done seems like a big hurdle. It’s as if your mind is filled with thoughts of what has happened, and you can’t concentrate on anything else.

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ExhaustionDon’t be surprised if you have no energy and feel constantly tired. Adjusting to any major change is exhausting. You may find you can’t sleep well, or conversely, you may find you want to blot it all out and sleep all the time.

Dreams and visionsDreams and nightmares are normal after a major loss. When someone has died, people feel their presence in some way. Hearing their voice or sensing them around in some way is common. If you believe people live on after death, you may find this comforting. If not, you may be frightened or disturbed by it. Sometimes too, you might see them everywhere; catching sight of them in the distance in the street, only to find it is someone else when you get closer.

How to manage if you feel stuck or desperate 17

Grief is experienced in your body too. Feeling tense and experiencing headaches, having no appetite, feeling sick, unexplained aches and pains, and a tight feeling in the chest are all common.

If someone has died from an illness, it’s not unusual to have symptoms that mirror theirs. These things are normal, but talk over anything that is worrying you with your doctor. If lack of sleep becomes a real problem for you, tell your doctor about that too. Lack of sleep can make anybody’s day feel awfully grim.

Grief is physical too

If someone has died from an illness, it’s not unusual to have symptoms that mirror theirs.

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Grief can be hard, but the year or so ahead doesn’t need to be a time of constant sadness or distress. There is always something you can do to help yourself through the dark patches.

Don’t be rushed into these things – you are already making a huge adjustment to the change in your life. There is no need to add to it if you can avoid it.

How you can help yourself

•Remember you are not alone – loss is part of being human. Find someone you can talk to, someone who will really listen. Seek out a counsellor if you feel you are burdening your friends.

•Try a support or grief group if there is one available. Talking to others with a similar experience can ease the loneliness of grief. Call the Cancer Council Helpline on 13 11 20 for information on bereavement support groups and programs.

•Balance rest and activity. Grieving uses a lot of emotional energy, and you will probably feel very drained. The important

thing is to try and balance rest with some productive activity. Keeping busy helps rest your emotions, and getting something done in your day can help you to feel better. Set yourself small, achievable goals and give yourself a pat on the back when you reach them.

•Keep decision making to a minimum. Try not to make any major changes for a while. People may want to hurry you to get the deceased’s clothes and effects sorted out quickly, or make a decision about where you live long term.

How you can help yourself 19

•Ask others for help. Sometimes it’s best if you are specific about ways others can help you. Do you need someone to mow your lawns, or do you just need a shoulder to cry on?

•It’s normal to feel angry. Find ways to be angry safely – play vigorous sport, scream in your car with the windows up or hit a pillow. You may feel silly, but action often helps.

•Try to eat well. If you have lost your appetite, eat frequent, nourishing, easily digested snacks.

•Pamper yourself. Hot baths, massages, comforting food, a favourite drink, a special magazine, listening to music; anything that helps. Cancer Council Queensland produces a relaxation booklet and CD. Call the Cancer Council Helpline on 13 11 20, Monday to Friday, between 8am and 6pm if you would like to obtain a copy of these resources.

•Learn ways to distract yourself on the days you feel you just can’t face life. Reading a gripping book, playing a round of cards with a friend, watching a film or video; anything that takes you away from yourself and your troubles for a little while.

•Try keeping a journal. Write whenever you feel like it. Looking back over past entries helps to remind you that you are getting somewhere, and putting your thoughts on paper is a good way of getting them straight.

•Get some exercise. A good walk can turn your mood around. Try swimming, vigorous digging in the garden or playing sport. Even giving the house a vacuum or mowing the lawn can help if you’re feeling tense.

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This helps you feel that while you don’t have any control over the fact of your loss, you can take control of how you deal with it.

... anything that takes you away from yourself and your troubles for a little while.

•Draw on your spiritual resources, in whatever way is best for you. For some people this will mean going to church or talking to a priest or minister. For others it will be a walk on the beach or in the bush, or listening to inspirational music – whatever reminds you of a different perspective on life, and a larger way of seeing your situation.

•Remember other difficult times you have had in the past, and how you managed them. Try to develop a sense of your personal coping style, which helps you best.

Grief is physical too 21

When there is a major loss in the family, everyone is affected in different ways. Children and teenagers feel grief just as adults do when someone close dies, but they may express it differently. They may express their grief in outbursts of anger, or by becoming very withdrawn, for example.

The ways children and young people understand death and experience grief changes with their age and development. Like adults, they need acknowledgement of their loss, support, and the opportunity to understand and express their feelings. They need to feel part of what’s going on. They need the adults around them to model grief for them; to show them that it’s OK to cry or to be angry in ways that don’t hurt themselves or others. And they need to feel encouraged to cherish their memories.

‘Being there’ for your children is especially hard when you are grieving yourself. Sometimes people feel they just don’t have any emotional energy left for their children. Letting others help is important. Extended family, friends and school can make a big difference. Stay in touch with your child’s school or preschool so their teachers are aware your child is having a difficult time.

The Cancer Council Helpline will be able to guide you with resources and support organisations that specialise in children and young people’s grief. Call Cancer Council Helpline 13 11 20, Monday to Friday, between 8am and 6pm.

Helping children in your family

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If you are finding your grief hard, it can help a lot to talk to a professional counsellor or psychologist, particularly one who is experienced in dealing with grief. They can’t do your grieving for you, but they can ‘walk with’ you for a while.

Hopefully you’ll have family or friends to support you through the months after a loss, but sometimes it helps to talk to someone outside. Perhaps at the moment you are not feeling too upset by what has happened, but if you do find things difficult, bear it in mind.

The Cancer Council Helpline is a telephone support and information service available to all Queenslanders affected by cancer. Staffed by trained professionals, this confidential service can provide information and support regarding a range of cancer-related issues including cancer prevention, early detection and current cancer treatments. Our Helpline can also provide a range of educational and promotional resources aimed at educating the community about all aspects of cancer, including diagnosis and treatment. Most resources are provided free of charge.

What professionals can offer

The Cancer Council Helpline is a free service provided by Cancer Council Queensland. Cancer Council Helpline can be contacted on 13 11 20, Monday to Friday, between 8am and 6pm.

What professionals can offer 23

Cancer Council Queensland has resources and books available to own and borrow. You can access these by calling the Cancer Council Helpline on 13 11 20, Monday to Friday, between 8am and 6pm.

When people are affected by cancer, either themselves or within the family, the internet can also be used as a source of information. There are many good internet sites which aim to provide supportive information to individuals and families who are grieving.

Other resources

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Useful websitesThe following are examples of internet sites which you may find helpful.

AustralianCancer Council Queensland.............................www.cancerqld.org.au

Cancer Council Australia........................................www.cancer.org.au

Child Bereavement..............................www.childbereavement.org.au National Cancer Institute..........................................................................www.cancer.gov/cancertopics/pdq/supportivecare/bereavement/patient

Victorian Government...............................................................................http://www.betterhealth.vic.gov.au/BHCV2/bhcArticles.nsf/pages/su_griefandloss?OpenDocument

WorldwideMacmillan Cancer Support...............................www.macmillan.org.uk

National Cancer Institute.............................................www.cancer.gov

American Cancer Society.............................................www.cancer.org

Where to go for more information

Please note the information contained in these websites does not necessarily reflect the opinion of Cancer Council Queensland. Effort has been made to ensure the websites are credible. However, Cancer Council Queensland and its advisors cannot accept liability in relation to this information. We advise you to discuss internet information with your doctor, GP, specialist or health care professional to check if it is relevant to your specific situation.

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Notes

NotesNotes

Notes

Cancer Council Helpline 13 11 20

Cancer Council Helpline is a telephone information service provided by Cancer Council Queensland for people affected by cancer.

For the cost of a local call (except from mobiles), you, your family, carers or friends can talk about any concerns and needs confidentially with oncology health professionals. Helpline nurses can send you written information and put you in touch with appropriate services in your area. If you need information in a language other than English, there is a telephone interpreting service available for you.

You can call Cancer Council Helpline, Monday to Friday, 8am to 6pm.

If you have difficulty communicating over the phone, contact the National Relay Service (www.relayservice.com.au), a Government initiative to assist people who are hearing and/or speech impaired. This service will help you to communicate with a Cancer Council Helpline nurse.

If calling outside business hours, you can leave a message and your call will be returned the next business day.

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For support and information on cancer and cancer-related issues, call Cancer Council Helpline. This is a confidential service.

For further information and details please visit our website: www.cancerqld.org.au