Caring for someone who is dying

Providing practical support

Many people worry about how they’ll manage the day-to-day tasks of caring for someone. To make it easier and safer to care for the person at home, you may need to modify the environment (e.g. handrails in the shower) or buy or rent equipment (e.g. shower and toilet chairs, bedpans, hospital bed).

Some carers prefer to provide personal care and practical support themselves and just need some guidance from a health professional, or occasional home help or respite. Other carers find providing personal care awkward or overwhelming and prefer to have it given by someone else. The palliative care team can help reduce your stress and free you up to spend time with the person you’re caring for in a way that is comfortable for you.

You may feel unable to care for someone at home and prefer that they receive specialist care in a hospital, palliative care unit or in a residential facility. Even then, you can still provide some personal care by helping with feeding, mouth care, bathing and toileting.

Practical ways to help

There are many things that family and friends can do to help support someone at the end of life. Many people want to help, but might not know how. Let people know what the sick person may need, and what help you need as a carer. Perhaps one person can coordinate care or use an app such as Gather My Crew.

Prepare meals – Preparing meals can become challenging. If possible, ask the person what they want to eat. Offer simple, small meals and mash food so it’s easier to swallow. A dietitian can give advice on preparing food. If friends offer to cook, let them know what meals are suitable. As the disease progresses, the person may lose their appetite, taste and may not be able to eat or drink. Don’t force them to eat or drink. Chips of ice can moisten the mouth.

Help with bathing and toileting – You may have to give the person a sponge bath, wash their hair over a basin, help them on and off the toilet or commode, help them use a urine bottle or bedpan, and help them to wipe themselves. An occupational therapist can help choose suitable equipment and teach you how to lift safely and correctly. You may need someone to physically help you with this.

Sort out the paperwork – Getting their affairs in order can give people closure to their life.  Help gather important documents, discuss the person’s choices for their future health care (e.g. substitute decision maker), and arrange legal advice if needed.

Record social media details – People often have more of a social media presence than they realise. Help the person list their social media accounts, passwords and what they want to have happen to them after they die.

Do odd jobs and run errands – Friends may be able to help with walking the dog, mowing the lawn, picking up the kids, or doing the shopping or laundry – anything that eases the workload of the main carer. Some volunteer organisations may be able to help with suitable practical jobs too.

Help with getting in and out of bed – It’s common for a dying person to spend more time in  bed. You may need to help them get in and out of bed, roll them over regularly so they don’t get bedsores, or lift them to change the sheets. You can use equipment to help with lifting. Talk to the palliative care team about borrowing a pressure relieving mattress or hospital style bed.  Many people make space in the living room for a bed, particularly if bedrooms are located upstairs.

Manage medicines – If you feel overwhelmed about giving medicines, ask your doctor, pharmacist or nurses for suggestions. A pharmacist can put tablets and capsules into a blister pack (Webster-pak), which separates them into the days and times they need to be taken.

Providing emotional support

The diagnosis of a terminal illness may be a crisis for family and friends. How everyone responds can depend on their relationship with the person dying and their own beliefs about death. It is natural to feel shocked, angry, scared, sad or relieved, or a combination of these emotions.

You may be worried about discussing the end of life with the person who is dying because you think you’ll upset them. People who are dying often say they want to talk about what is happening but they are afraid the topic will upset their carer, family member or friend. So while starting the conversation can feel difficult, the opportunity to share feelings can be valuable for both of you.

As the person you are caring for nears the final days of life, there are still many ways to spend time together: sit with them without talking; read a book; look through old photo albums and talk about the pictures; sing a song; share some special memory or experiences you’ve had together; or tell them that you love them and that family and friends send their love.

When someone is ill for some time, it’s common for their family and friends to begin to grieve their death before it happens. This is known as anticipatory grief. You might find yourself wishing for the person’s life to be over. It’s also not unusual to start thinking about how you’ll cope, about other events in your life, the funeral, and so on.

All of these responses and thoughts are natural and okay. It may help to speak to a health professional or counsellor about how you’re feeling, or to call Cancer Council 13 11 20.

Making arrangements

As death approaches, speak to the palliative care team about what to expect. You may want to consider the following.

Rituals – Ask the person whether they’d like a clergy member or other spiritual carer at the bedside, and what rituals or ceremonies should be performed.

Contact list – Have information on how to contact the doctor, nurse or support services easy for everyone to find.

Funeral home – Notify the chosen funeral home that a death is expected soon. Some people want to have the body at home for several days, so let the funeral home know if this is the plan.

Ceremony – Find out what the person would like done with their body after death or if they’d like to donate tissue or organs. Some people have strong views about whether they want to be buried or cremated, what sort of ceremony they want, and what memorial they want.

Ambulance service – Ask your health professionals who to contact if complications arise at home. Your first reaction might be to call an ambulance, but an ambulance officer’s duty of care may mean they have to resuscitate. If this is something the person you are caring for would prefer didn’t happen, speak to your doctor about completing an authorised care plan for ambulance officers to follow. Contact the ambulance service in your state or territory to fill in a form so they are not compelled to resuscitate.

Saying goodbye

A life-limiting illness offers you time to say goodbye. You can encourage the person who is  dying to discuss their feelings, and you can talk about your own in return. Sharing how you both feel can start important conversations that can be memorable. This is also an opportunity for you to tell the person who is dying what they mean to you and how you might remember them.

The person nearing the end of life may want to make a legacy, such as writing their life story or letters to family and friends. They may want to visit a special place or contact someone they’ve lost touch with. You can help the person with all these tasks. They are all part of the process of saying goodbye, for all of you.

When you don’t know what to say

People often wonder what they should say to a person who is dying. It is understandable that you might feel confused – what you feel might be so complex that it is hard to find the right words, or any words at all. It is natural to worry about saying the wrong thing. You may want to offer something that will help them cope but don’t know what that is. It is usually better to say something than to pretend nothing is wrong.

Most times, someone who is dying will find comfort in you being there, and appreciate knowing that family and friends are thinking of them. Even if you feel you’re not doing anything, just being there sends the message that you care.

In her book The Etiquette of Illness, Susan Halpern suggests asking, “Do you want to talk about how you’re feeling?” rather than “How are you feeling?” This approach is gentle and less intrusive. It also gives the person the choice to respond or to say no.

Ways to talk with someone who is dying

• Listen to what the person who is dying tells you. They may want to talk about dying, their fears or plans. Try not to prompt an answer that confirms what you think or your hope that things could be better.
• If you think they’d find it easier to talk to a spiritual care practitioner, offer to put them in touch with one.
• Try to treat someone who is dying as normally as possible and chat about what’s happening in your life. This makes it clear that they’re still a part of your life.
• Avoid talking in an overly optimistic way, for example, “You’ll be up in no time”. Such comments block the possibility of discussing how they’re really feeling – their anger, fears, faith etc.
• Apologise if you think you’ve said the wrong thing.
• Let them know if you feel uncomfortable. They might be feeling uncomfortable too. It’s okay to say you don’t know what to say.
• Accept that you or the person dying may cry or express anger. These are natural responses to a distressing situation.
• Ask questions. Depending on how comfortable you feel asking direct questions and on their willingness to talk, you could ask, “Are you frightened of dying?” or you may prefer, “I wonder whether there’s something you want to talk about?”
• Encourage them to talk about their life, if they’re able to and interested. Talking about  memories can help affirm that their life mattered and that they’ll be remembered.
• Just be there. Sometimes it’s the companionship that is most appreciated – sit together and watch television or read.
• Even if they’ve shown no religious interest in the past, that could change as death approaches. You could offer to pray together, but respect their wishes if this is not something they want.

Providing physical support

When a person is dying, carers often have lots of questions: Can they hear me? Are they in pain  or uncomfortable? What can I do to make this process easier? How long will it be now?

There will probably be gradual physical changes. Watching these changes can be upsetting. It may help to know that they are a normal part of the dying process, and don’t mean that the person is distressed or uncomfortable.

You don’t have to face these changes alone. The health care or palliative care team can help you provide physical, emotional and practical comfort. You can also call Cancer Council on 13 11 20 to find out what support is available.

Signs that someone is dying

Some family and friends find that having information and knowing about the physical process  of dying can help to ease their fear and anxiety when it happens. Other people prefer to take one day at a time and ask health professionals for explanations if and when the need arises.

If you would like to know what to expect when someone dies, this section describes some of the common physical changes that may occur in the last days and hours of life. These physical changes don’t happen in any particular order. In medical terms, the dying process is viewed as the body’s systems closing down.

Sleeping more – The dying person has less energy, and often they may spend most of the day sleeping or resting. They may still be conscious and able to hear, but have their eyes closed and not be moving.

Eating and drinking less – As the body slows down it uses less energy and the person doesn’t need to eat or drink as much. They may begin to resist or refuse food or drink. Giving the person fluids at this time does not help them, but you may moisten their mouth for comfort with a sliver of ice, small sips of water and regular mouth care.

Little interest in the outside world – The dying person may gradually lose interest in people nearby. They may find it hard to concentrate and they may stop talking. Withdrawing is part of letting go. Near the end, some people have a sudden burst of alertness.

Breathing changes – Breathing may become irregular, laboured, noisy and rattly. You may hear an irregular breathing pattern known as Cheyne-Stokes. This is a loud, deep breath followed by a long pause (which may last from 5 seconds to as long as a minute), before a loud, deep breath starts again.

If mucus builds up in the throat, it can create loud, gurgling sounds, which some people call a “death rattle”. Medicines can help dry up any mucus or you can try changing the person’s  position in the bed. Listening to this change in breathing pattern can be upsetting, but it is thought that it is not painful for the person.

Bladder and bowel changes – As the person eats and drinks less, they will produce less urine  and faeces. As the body’s systems slow down, the person may have trouble emptying their bladder. A catheter may be inserted into the bladder to drain urine. Medicines may be prescribed for constipation, a common side effect of some pain medicines. Loss of bladder and bowel control sometimes happens in the last stages of the dying process, but does not always happen. Speak with your health or palliative care team to help you manage any incontinence.

Disorientation and confusion – Carers are often unprepared for the person becoming  disoriented and confused. This is known as delirium. It can involve a lower level of  consciousness; memory loss; hallucinations (seeing or hearing things and people that aren’t actually there); delusions (false beliefs or ideas); mood swings; and sleep disturbances. A person who is dying may not be aware of where they are or who else is in the room, may speak or reply less often, or may respond to people who can’t be seen by others. The person may drift in and out of consciousness and eventually become unresponsive.

Speak to the palliative care team if you notice any of these changes, so they can advise you on managing delirium.

Delirium may occur when waste chemicals (toxins) build up in the brain as vital organs begin to shut down, but it can also have a range of other causes, such as fever or constipation.

Restless moving, twitching, groaning or calling out – These symptoms are part of delirium and may include agitation, anxiety, anguish and anger, all of which can be very distressing for  carers to see. These symptoms (sometimes called terminal restlessness) are common and not necessarily uncomfortable for the dying person.

Dry mouth and dry or cracked lips – This can happen if the person is dehydrated or has been breathing through their mouth, or it may be due to some medicines. You can prevent this with regular mouth care, which your health care or palliative care team can teach you.

Cool skin, especially the hands and feet – As circulation slows, the hands, feet, fingers and toes (extremities) become cooler and turn a bluish colour. It’s thought that the person will be unaware of feeling cold.

How you can help in the final stages

Wherever someone chooses to die, family and friends can help in the final stages. If you are providing care at home, ask the palliative or health care team how you can help. In a palliative care unit, hospital or residential aged care facility, ask the staff how you can be involved.

Offer comfort – Apply lip balm and keep the mouth moist with ice cubes or swabs. Use a vaporiser in the room to help with breathing. Put incontinence sheets or pads under the bedsheets. Keep the person warm with a blanket and use cushions so they are comfortable. Help them change positions often. A nurse or occupational therapist can show you suitable positions.

Be a gentle presence – Sit with the person and talk or hold their hand. Often just being there is all that is needed so that they don’t feel alone. Gently massage their hands or feet with a non-alcohol-based lotion. Speak gently, and occasionally remind the person of the time, place and who is with them. Don’t force-feed them even though you may be distressed by their loss of interest in eating.

Create a calm atmosphere – Use soft lighting. Have their favourite music playing in the background to create a gentle and peaceful atmosphere. Quietly read a favourite poem, passage from a book, or spiritual or religious text.

Keeping a vigil

For many people, being with the dying person is a way to show support and love. This is called keeping a vigil.

The person may be sedated or unconscious at this time. Your cultural or spiritual traditions  may require someone to be present, and this may also be the time to perform any rituals.

Some people find keeping a vigil exhausting and draining, and it can be hard to estimate how long it will last. Taking breaks and sharing the time with others can help.

You may worry that leaving the room could mean missing the moment of death. If this  happens, it may be reassuring to know that sometimes a person seems to wait to be alone before they die.

How to keep a bedside vigil

• You can simply sit with the person and perhaps hold their hand.
• Hearing is said to be the last sense to go, so you may want to talk to the person or even have a conversation among the people in the room so that the person knows they are not alone.
• You could read aloud, sing or hum or play some of their favourite music.
• Plan to take breaks or organise shifts with other family and friends.
• Decide who you think is appropriate to have in the room at this stage and let other visitors know if you want just close family.
• Have food and drinks on hand and some cushions and blankets if you are at a hospital or palliative care unit where it may get cold.

We had all surrounded my father-in-law’s bedside, then we started to share the vigil in turns. When there were fewer people around, he passed away.” JUDITH

Choosing the moment to die

Sometimes people appear to pick the moment to die. You may have heard stories of some people holding out until a particular relative or friend arrives at their bedside, or until a special occasion occurs, before dying. Others appear to wait until their family or friends have left the room or at a time when there are few people around.

It can be very upsetting if you’ve been sitting with someone for many days, and they die while you are taking a break. You may feel guilty or regretful for not being there for them at that crucial moment, but it may help to know that this might be how they wanted it to be.

What happens at death

No-one really knows what death feels like, but we know what death looks like from those who have nursed a dying relative or friend. You can ask a palliative care team member or nurse to talk you through it.

The person’s breathing will stop, although they may stop breathing for a time and then take one or two final breaths. As soon as the heart stops beating, the body rapidly cools and becomes pale.

Many carers say it was a profoundly moving experience and a privilege to be with someone at the moment of death. The memory of the final moments are likely to stay with you for a long time.

After someone dies

Even when death is expected, it’s common to feel upset, sad or shocked. An expected death is not an emergency and what you need to do next depends on the circumstances.

What to do after the death

If the person was being cared for at home and was expected to die at home, there is no need to call an ambulance or the police. You can take some time to sit with the person. You may want to call close family or friends who may have wanted to see the person or say goodbye. If you would prefer not to be alone, call a friend or family member. If the person dies during the night, you may choose to wait until the morning to take further action. There is no hurry or need to call or let someone know right away.

When you feel ready, call the person’s doctor and a funeral home. The doctor will sign a medical certificate confirming the death. This is needed to make funeral arrangements. The funeral director can register the death with the registry of births, deaths and marriages in your state or territory; the registry will then organise a death certificate.

If the death occurs in a palliative care unit, hospital or residential aged care facility, there’s usually no need to rush. You can have time alone with the person before the nurses explain what needs to be done. Some people want to wait until other family members or friends have had the opportunity to say goodbye.

Several organisations will need to be told of the death. A useful checklist of who may need to be notified can be found on the Services Australia website.

Funeral and religious services

Many people have no previous experience organising a funeral and little knowledge of what to do. Funerals can be an important part of the grieving process. They allow family and friends to share their grief, say goodbye and celebrate the person’s life. Funerals can be personalised to suit cultural or spiritual beliefs.

The executor of the will or a family member usually arranges the funeral service. Most people use a funeral director, who can organise the service, coffin, newspaper notices and flowers, and help with many of the legal responsibilities such as registering the death. You can organise these details yourself if you prefer; you do not need to use a funeral director. If the person has a prepaid funeral plan, it will usually include details of what they wanted and also which funeral director to use. Even if the person has prepaid their funeral plan, they may also have left instructions or talked to you about their wishes.

If you don’t know the person’s wishes, you might need to decide. This can be difficult and stressful, especially as other family members may have different ideas about what should happen. You may choose not to have a funeral or to have an event such as a celebration of life.

I had promised Mum that after she died, I would make sure she had her favourite lippy on. I did this at the funeral parlour before the final viewing of her body. She was wearing the dress we had chosen together.” JUDITH

Ways to remember

You may want to do something special to acknowledge and honour the life of your family member or friend after they’ve died. Some people find this helps them cope with their loss.

• Cook their favourite meal or cake on their birthday.
• Plant a special tree or flower.
• Frame a photo or a cherished note or other memento.
• Make a donation or volunteer at their chosen charity or community group.
• Create an online memorial page with photos and stories.
• Organise to have a memorial plaque put in a favourite spot.
• Create an annual award or scholarship in their name.
• Talk about the person with others who knew them.

Wills and probate

A will is a legal document stating how the deceased person’s belongings (assets or estate) are  to be distributed after their death. The executor of the will is responsible for distributing the person’s assets to the people named in the will. This happens after any debts are paid.

Before the executor can release any of the assets, they need to have the will validated by the courts. This process is known as probate. 

Download our fact sheet ‘Your role as executor’

Financial matters

You may be eligible for financial assistance after an immediate family member has died. Centrelink provides a number of payments and services to the spouse, partner or children. Check to see if you’re eligible for a bereavement allowance or payment, double orphan pension, widow allowance or pension bonus bereavement payment at Services Australia.

Download our legal and financial fact sheets about what happens to superannuation, income, assets or unpaid debts when someone dies

Grief

The response you have to losing someone is called grief. This loss can impact many areas of your life – from the physical, mental and emotional, to the social and spiritual.

You may feel grief for people you loved very much, but you may also feel grief if you lose  someone you had a complicated relationship with, or hadn’t seen in a long time.

You may feel sad, numb, disbelief, lonely, guilty, angry, relieved or accepting. It’s common to have trouble sleeping, cry a lot or have difficulty crying, lose your appetite, or not be interested in your usual activities. You may feel tired or lack energy, be forgetful or not able to concentrate, or not want to go out and do things you usually would.

Some people have a big emotional reaction right away, but other people may “get on with life” for a while before feelings of grief happen. There’s no right or wrong way to grieve, and  everyone mourns in their own way and in their own time.

Coping with grief doesn’t mean getting over the person’s death. It’s about finding ways to adapt to the loss. It may be according to religious or spiritual practices, but it can also be more personal. Even though your relative or friend is no longer physically present, they remain part of you and your life. This ongoing connection can be a source of comfort in your grief.

You might feel pressure from yourself or others to get over it and get on with life, but grief has no set stages or timeline. It can seem like a roller-coaster – sometimes you might feel yourself “coming good” and then swiftly go downhill again for a while. The sorrow may never go away completely, but most people gradually adapt to the loss. The pain will usually become less intense as you come to terms with how your life has changed.

Sometimes, the pain does not seem to ease over time. If you’re concerned that your grief is stopping you from living your life, professional support may be helpful. At any stage of grief, you can call Cancer Council on 13 11 20 to talk about how you are feeling or connect with further support. The palliative care team may also offer support.

Download our booklet ‘Understanding Grief’