The experience of grief

Emotions

You may feel a range of strong emotions, such as sadness, anger, relief, guilt or anxiety.  Sometimes people are overwhelmed by the strength of their feelings or find that their mood changes quickly and often. These are common ways of coping with loss. How your body responds to grief can also affect your emotions.

Try to use the coping strategies that have worked for you in the past. Remembering how you have coped with other difficult situations may help you feel more able to cope now with your emotions. Or you may find that your usual ways of coping are not helpful with your current loss, and you need to find other coping strategies. Explaining how you are feeling to family and friends can help them understand what you’re going through.

People who tend to adjust well to difficult or challenging situations (resilience) often find that they show this quality after a loss. This doesn’t mean they are not grieving, but that they already have coping strategies.

Shock and numbness

When someone dies, you may feel nothing at first. This may be because you can’t believe it’s true, you’re still in shock or you’re protecting yourself from the enormity of what’s just happened. It may feel like the person who died will suddenly walk through the door again.

This numbness can be helpful during the first days and weeks after a loss, when you need to focus on practical arrangements, such as planning and attending the funeral. Don’t feel you have to push yourself past this emotional numbness. For most people, it will start to change in a few days or weeks, although it may return from time to time. The reality of your loss may be more deeply felt as time passes.

I knew he was going to die, but nothing prepared me for the depth of my sadness when he did. Even though I was surrounded by family, I felt so very alone.” VANESSA

Sadness

You may feel like the sadness will never go away. You may long to see the person so much you don’t know what to do with yourself. You may cry, or you may feel unable to cry, even though you are terribly sad. If you release emotions with crying, you may find it hard to stop crying, with tears sometimes coming when you least expect them. This could mean you avoid going out because you can’t predict or control the crying. While this is understandable, it’s a good idea to try and gradually do some outings where possible.

Depression and despair

When the reality of the loss sinks in, you may find your sadness overwhelming or feel like your life has lost meaning. A loss of enjoyment in life and a lack of direction are common.

If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, you may be experiencing depression. This is quite common.

Talk to your GP, because counselling or medicines – even for a short time – may help. You may be eligible for sessions with a psychologist. Cancer Council SA provides a free counselling program. Call Cancer Council 13 11 20 for more information. For information about coping with depression, visit Beyond Blue or call them on 1300 22 4636. For 24-hour crisis support, visit Lifeline or call them on 13 11 14.

Anger

Many people feel anger when they are grieving. And you may find it comes and goes. You may feel angry with your god, with the person who has died, and with yourself. You may also feel angry with the cancer, the reality of death, with those involved in caring for the person who  died, with people living their lives as if nothing has happened – even the person behind you in the supermarket queue – or for no obvious reason. If the person died at a younger age, you may feel anger when you see other people who are well and happy because the person who died did not get the opportunity to live longer.

Finding ways to express your anger can help. This may include talking with a trusted friend or counsellor, doing physical activities such as gardening or exercise, listening to or playing music, getting creative, or joining a support group.

Relief

You may be surprised to feel relief that the person has died, and then guilt for feeling this way. The relief may be because they were unwell for a long time, they needed a lot of care or they had symptoms that were challenging, such as anger, irritability or changes to personality.  Seeing someone in pain is hard, so it’s natural to feel relieved that they are no longer in pain. The relief may be that the inevitable has happened and that you’re no longer living in anticipation of their death.

If your relationship with the person was challenging or complicated, you may also feel relieved and a mix of other feelings such as sadness, anger or guilt at their loss. When a person dies, we are often expected to focus on their good points and not criticise them – but dealing with cancer is bound to show all sides of people. Try to remember that the person who died was human, with good and bad traits.

Guilt and regret

You may feel guilt or regret for various reasons, including for the:

• way you behaved to the person in the past
• things you did or didn’t do
• decisions you made about their care
• things you left unsaid.

Try to remember that no-one is perfect, especially when dealing with the stresses involved in caring for someone with cancer. Remind yourself that you tried your best, often in difficult circumstances.

Sometimes people feel guilty when they find themselves joking and laughing, feeling happy at times, or getting on with life. But it is normal to experience a range of emotions as you learn to live with the loss – it doesn’t mean that you didn’t care about the person or that your grief is not genuine. Light-hearted or joyful moments can help to counter the lack of control that grief can bring and help you release some of the physical tension that often comes with grief.

Fear and anxiety

People often become very fearful when they have a major loss in their life. You may be afraid of what the future holds and how you will cope, worry about other people you love, or fear for your own health. You may be anxious about how you’ll cope with tasks you’ve not done before, such as finances, cooking or parenting. You may find yourself worrying about things that were no trouble to you before, such as going for a walk, doing the shopping or going back to work.

If you find that your fear or worry is affecting your ability to do your usual roles and routines, or is causing you enduring and severe distress, it might be worth seeking support.

Tips for coping with how you feel

• Accept that your feelings are to be expected given the loss. You might sense pressure from  yourself or others to behave in a certain way, but remember that everyone has their own style of coping.
• Be patient with grief. You may feel that after a certain time you should be “moving on”, but your adjustment to the loss is likely to be gradual, and may take longer than you or others  expect.
• If you feel anger, find safe ways to show it – exercise, scream or shout, write, paint or draw.
• Try to make movement a part of your daily routine. Research has shown that regular physical activity can help with feelings of anger, stress, anxiety and depression.
• Reflect on the experience of your caring role – you may feel you are stronger than you realised  and be proud of how you supported someone as they were dying. Even the small things you did showed how much you cared.
• Forgive yourself for the things you didn’t say or do.
• Be kind to yourself for any wrongs you feel you did to the person who died. People often feel that they should not have become frustrated or “snapped” that one time when they were tired. Understand that tiredness and irritability are common when caring for someone.
• Take your mind off your grief for a little while – read a book, write in a journal, start a new project, play a game online, or watch a movie with a friend or on your own.
• Try complementary therapies to help you manage your feelings. Examples include meditation, music or art therapy.

Download our ‘Understanding Complementary Therapies‘ booklet and listen to our ‘Finding Calm during Cancer‘ podcast.

Thoughts

Grief often makes thinking clearly, focusing and concentrating difficult. Even simple tasks can seem hard. You may feel very indecisive, or you may make impulsive decisions. Some people may even wonder if they are losing their mind.

Be kind to yourself. How you are feeling is understandable given that you have experienced the death of someone important to you.

If you are feeling confused and forgetful, it may be helpful to write things down.

Tips for managing jumbled thoughts

• Where possible, try not to make any major changes or decisions until you can think more clearly. People may hurry you to sort out clothes and personal items or decide where you will live long term. Don’t feel rushed – you are already adjusting to a huge change.
• Use a diary or online calendar or app to keep track of appointments or set reminders on your phone.
• Use apps like Gather My Crew to coordinate offers of help from family or friends.
• Ask others for assistance. They can help you sort out paperwork or, if you have school-age children, keep up with school activities.
• If you are working, talk to your employer about how much time off you need, changing your hours or tasks temporarily, or ensuring that your job will be there for you.
• Write about how you feel. Keeping a journal or writing down memories and thoughts can help you process the experience.

Physical symptoms

Grief is experienced in your body too. The shock of the loss, even if you were expecting it, releases adrenaline and other chemicals. This can make you feel anxious or make it hard to switch off worrying thoughts. Other physical responses to grief include exhaustion, fatigue, headaches, nausea, unexplained aches and pains, changes to appetite, and a tight feeling in the chest and stomach. Grief can also weaken your immune system, which makes you more likely to catch colds or other infections.

The physical effects of grief on your body can affect your ability to manage your emotions and think clearly. Talk to your doctor about any physical issues that are worrying you or making it harder to cope.

Difficulty sleeping – It’s common for grief to change sleep patterns, from sleeping a lot to sleeping a little. You may find it hard to get up in the morning, fall asleep or stay asleep, or you may have long periods of being awake during the night. If you’ve been caring for someone, you may have had to be alert during the night in case they needed help. It can take time to adjust to sleeping more soundly again. You may have dreams or nightmares in which you see the person who has died.

Feeling exhausted – Don’t be surprised if you have no energy and feel constantly tired.  Adjusting to any major change is exhausting, and too little or too much sleep can make you feel even more tired.

Changed appetite – It is common to have either little appetite or an increased appetite after a loss. Some people also experience an upset stomach, which may last for some time or come  and go. Changes to your appetite or weight can make you feel distressed. Please know that you can talk to your GP or counsellor about your concerns.

Tips for coping with physical symptoms

• Try and get some exercise every day. A walk can improve your mood, clear your head, give you more energy and make it easier to sleep. You can try walking, swimming, a team sport, yoga, dancing or a new activity. Even doing housework such as vacuuming or mowing the lawn can help if you’re feeling tense.
• Go to bed and get up at the same time every day.
• If you’re unable to fall asleep, get up and do something relaxing (e.g. read a book, or listen to music or a podcast) until you feel sleepy. Practise slow, deep breathing or progressive muscle relaxation exercises while in bed – this will slow down the mind and allow the body to relax.
• Ask your doctor before using sleeping tablets or natural sleep remedies.
• Get in touch with a support service if you need to talk to someone. Talk to your doctor about seeing a counsellor, social worker or psychologist.
• Limit caffeine, alcohol and electronic devices as they can affect sleep.
• Try to eat a healthy, balanced diet. If you have lost your appetite and are barely eating, try to snack on nourishing, easily digested foods.
• Avoid eating unhealthy foods or eating large amounts of food for comfort. A poor diet can  affect your mood.
• Explore other ways to help yourself feel better, such as getting fresh air and exercise in a park, listening to music, or having a bath or massage.
• Try meditation or relaxation to help with the anxiety. There are many recordings, videos and smartphone apps to guide you through different exercises. Listen to our ‘Finding Calm During Cancer‘ podcast.

Behaviours

You may act differently when you are grieving. You may try to keep yourself busy, sleep a lot or find it hard to complete even simple tasks. Many people avoid reminders of the person who died because of the intense emotions. These different behaviours are normal but can make
it difficult to settle into a routine.

Some people smoke, drink alcohol or use other non-prescribed drugs. While these behaviours may give short-term relief, they often only delay the experience of grief and can lead to more serious problems. If you or others are concerned about your use of alcohol or other drugs, ask your GP for help and support.

Tips for establishing helpful behaviours

• Try to live day-to-day rather than looking too far ahead or backwards.
• Balance rest and activity. Set small goals and congratulate yourself when you achieve them.
• Have an alternative plan ready in case you’re not up to a planned activity.
• Go easy on yourself. You may need to relax your usual routines or standards while you are grieving.
• Keep to a daily routine that includes the time you get up, get dressed, eat meals and go to bed. This can help you maintain healthy habits and self-esteem.
• Have something to look forward to (e.g. buying a bunch of flowers; having a massage; listening to music; getting a haircut; enjoying a live performance or visiting a coffee shop).
• Schedule days now and again without any plans or goals to give yourself a chance to recharge.

Spiritual beliefs and faith

Your spiritual beliefs may be challenged as you question the meaning of the loss and what happens to us after we die. Some people find comfort and strength in their spiritual beliefs and in connecting with other members of their faith. Other people feel abandoned or betrayed
at a time of great need. If your faith has been important to you, this can be one of the most unsettling aspects of grief.

You may find that your search for answers leads to spiritual growth. Whatever your beliefs, it can be helpful to explore questions about life and death with someone you trust, such as a spiritual care practitioner, family member, friend or counsellor.

Tips for exploring the spiritual impact

• Find ways to connect with what spirituality means to you (e.g. praying; visiting a place of  worship; going for a walk in nature; meditating; listening to music). This connection may give you a different perspective on life and a larger way of seeing your situation.
• Talk about your feelings with a spiritual care practitioner (pastoral carer, chaplain or religious leader). There will usually be one on the palliative care team. You can also ask the hospital social worker if there is someone you can talk to. Accept that having doubts or concerns may be part of a process leading to a stronger sense of your own spirituality.
• If it feels right to you, follow the mourning customs of your religion or culture. Some people like the structure these customs provide for their grief.
• Create your own rituals (e.g. visiting a place where you feel close to the person who died; lighting a candle; creating a playlist).

Relationships

Grief affects how you interact with the world, your identity, and the roles you have within your family or social circle. You may find that your friendships and family relationships change.

A sense of presence – It is common to feel a sense of closeness to the person who died. People often report that they see, sense or dream about the person, especially in the first few weeks. Most people find this comforting; but some may find it frightening and unexpected.

Loneliness – People often feel intensely lonely. You may have lost someone you shared activities with, or if your caring role was a major part of your life, you may feel lost without it. It can take time to work out a new routine or identity. After some time has passed, you may still feel your loss very strongly, but find that others seem to have moved on. This can be hurtful and make you feel alone, and you may withdraw from those around you. By trying new activities and groups, you may form new and supportive friendships.

Abandonment – You may feel abandoned and rejected by the person who died. Or you may feel neglected by family members and friends you thought would be there for you. You may be surprised by who offers the support you need – often it’s someone who has experienced a major loss themselves.

Conflict – It’s common for families to experience conflict at the time of death and afterwards.  Because everyone grieves in their own way and in their own time, you may have disagreements with family members and friends after someone dies. There may also be conflicts over the person’s will and who gets their treasured possessions. It is important to get support through these difficulties.

Tips for staying connected with others

• Know that you are not alone. Loss is part of being human. Find someone you can talk to who will listen and be understanding, or ask your GP or palliative care service about bereavement counselling.
• Find ways to stay connected to people who have died.
• Read other people’s accounts of grief. Find stories online, through bereavement support groups or resources at your local library.
• Join a support or grief group – either in person or online. Call Cancer Council 13 11 20 to find a support group.
• Share your thoughts about the dying process with the people who were there with you.
• Ask others for assistance – it will make them feel valued and useful.
• Re-enter your social circle slowly. At first, mix with people you feel comfortable with and who understand you well. Even if you are just sitting and listening, you are connecting to others.
• Consider who can meet your different needs. Some people might be good at providing practical help, while others are better at providing emotional support.
• When you feel ready, join a social group or take up a new activity. Recognise that the first time you return to an activity, such as going to the shops, club, school or work, is likely to be the hardest. It tends to get easier with time, but asking someone to come along with you can make the initial steps feel less daunting.
• Be gentle and forgiving with others and yourself. Grieving family members and friends may seem angry or irrational. Try not to take it personally. Keep in mind that you are vulnerable too and have the right to protect yourself. Let someone else support them for a time.