Caring for someone nearing the end of life

Saturday 1 February, 2014

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On this page:  Providing practical support | Providing emotional support | Providing physical support |


Even when you know the end of life is approaching for a family member or friend, you might not feel prepared. This page covers the practical, emotional and physical issues to expect and what you can do to provide comfort and support.

  • You may need to provide support with physical, emotional and practical issues. Services are available to help.
  • It’s natural to feel like you don’t know what to say. Often all that is required is sitting with the person who is dying, and letting them talk, if they’d like to.
  • After the death you may need to deal with practical matters, such as organising the funeral and administering the will.

Looking after a person who is dying can be stressful, and you will need help and support. It is common to feel like you don’t know what to do, what to say and how to cope.

As a person nears the end of life, you may not know what to expect. It’s common for people to have little practical experience of death and dying. If you’ve never seen anyone die before, you may be afraid of what will happen. For many family members and friends, often called carers, anticipating what is going to happen helps them feel less frightened and confused, and allows them to prepare for the emotional and physical changes ahead. This chapter covers ways to deal with the dying process.

Caring can be physically and emotionally hard work. Cancer Council’s Caring for Someone with Cancer booklet has many suggestions on how you can look after yourself during this time. Call 13 11 20 for a copy.

Providing practical support

Many people worry about how they’ll manage with the day-to-day tasks of looking after someone. This might include showering, toileting and getting them safely in and out of bed. Some of these tasks can be performed by someone else and can help reduce your stress and free you up to spend quality time with the person you’re caring for. You may find providing personal care awkward or embarrassing, especially at first, but most carers say they get used to it. Some carers find their loved one prefers receiving personal care from somebody they don’t know well.

Who can help
Community nurses provide hands-on nursing care and practical assistance
Occupational therapist or physiotherapist help make the physical aspects of daily activities easier for the carer by organising equipment
Palliative care team help the carer maintain quality of life for person they’re looking after
Social worker connect you with support services which can help with shopping and cooking or personal care
Pastoral carer supports you in talking about any spiritual matters
Home nursing services provide nursing care and support
GP advises on the person’s day-to-day care
How you can help

There are many things that family and friends can do to help support their loved one. For many people who are dying, it is important for them to get their affairs in order, such as organising paperwork or a will. This can help them express their choices and feel like they’ve given closure to their life. Family and friends can often help their loved one gather together important documents or consider choices about their future health care. Assistance can also be offered for the following tasks.

Meal preparation

Preparing meals for someone who is sick can be stressful. Try cooking simple foods or mashing food up so it’s easier to swallow. As the disease progresses, the person may lose their appetite and not be able to eat or drink. At this time, it’s important to not force them to eat. 

Managing medication

If you need to give medications and feel overwhelmed, ask your doctor for some suggestions. The Caring for Someone with Cancer booklet also provides answers to key questions carers have about medications. You can also ask a pharmacist or community or palliative care nurses for more information.

Bathing and washing

If the person you are caring for can’t move around easily, you may have to sponge bathe them or wash their hair over a basin.

Toileting

You may have to help them get on and off the toilet or commode, help them use toileting equipment in bed such as urine bottles or bed pans, and sometimes help them to wipe themselves. Lifting someone is hard work and you may need help with this, either from another person or mobility aids or equipment.

Getting in and out of bed

It’s common for a 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. Many people create space in the living room for the bed; particularly if bedrooms are located upstairs. The palliative care team can help with providing this care.

Providing emotional support

The diagnosis of a terminal illness may create a crisis situation for family and friends. How everyone responds may depend on the relationship with the person dying, whether they are your partner, parent, child or friend, and everyone’s beliefs about death. At first, it’s natural to feel shocked, angry, scared, sad or relieved.

You may be scared of talking about the end of life with your loved one because you think you’ll upset them. It may help to know that often people who are dying want to talk about what is happening but are afraid the topic will upset you – their carer, family member or friend. Starting the conversation can be difficult but 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 share time together: you can read a book; sing a song; talk about what you’ve been doing or about the weather; share some special memory or experiences you’ve shared together; or tell them that you love them and that family send their love. Conversation may feel difficult sometimes because it may be hard to keep going when there is no visible response. You may find it challenging to keep talking but don’t want to leave the person alone. See the "I don’t know what to say" section below for suggestions.

You may find yourself wishing for their life to be over. You may find yourself thinking about yourself – other events in your life, the funeral, etc. All these responses are natural and okay.

I don’t know what to say

People often wonder what they should say. It’s understandable to feel tongue-tied – what you feel might be so complex that it’s hard to find the right words, or any words at all. It is common to worry about saying the wrong thing.

You may want to say something that would help them cope but don’t know what that is. It’s usually better to say something than pretend that nothing is wrong. Someone who is dying probably appreciates knowing that family and friends are thinking of them. Even if you feel you’re not doing anything, your presence sends the message that you care.

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

  • Listen to what the person 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 pastoral care worker, offer to put them in touch.
  • 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 alive and still a part of your life. Tell them what’s happening at work or at home, talk about films you’ve seen, programmes you’ve watched on TV, or books you’ve read.
  • Avoid talking with an overly optimistic attitude, i.e. “You’ll be up in no time”. Such comments block the possibility of discussing how they’re really feeling – about their anger, their 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 that you don’t know what to say.
  • Ask questions. Depending how comfortable you feel asking direct questions and their willingness to talk, you may ask, “Are you frightened of dying?” or you may prefer a softer approach, “I wonder whether there’s something you want to talk about?”
  • Just be there. You don’t need to talk all the time, sometimes it’s the companionship that is most appreciated – sit together and watch television or read.
  • 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.
  • Try not to be embarrassed if you or the person dying cries. This is a natural response to a distressing situation.
  • Even if they’ve shown no religious interest in the past, that could change as death approaches, so you could offer to pray together.
  • Try to be with the person during the final days or hours, if that is what you both want. Dying can be a lonely experience, and even though you might find it hard to cope with, the experience may be harder for them to face alone.

Saying goodbye

A life-limiting illness offers you time to say goodbye. You can encourage your loved one to share their feelings, as you share your own. Sharing how you both feel can start important conversations, which 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 documenting their life or writing letters to loved ones. They may want to visit a special place or contact someone with whom they’ve lost touch. These tasks are all things you can help them do. These are all part of the process of saying goodbye, for all of you.

Keeping vigil

For many people, staying with the dying person is a way to show support and love. This is called keeping a vigil. It also ensures the dying person doesn’t die alone.

You may find it comforting to spend time sitting with your loved one, perhaps holding hands. Hearing is said to be the last sense to go, so you may want to talk, read aloud, sing or play music.

"When my dad was dying, I sat beside his bed for hours and held his hand. I didn’t know what to say so sometimes I read the newspaper to him and at other times I talked about the things we did together when I was a kid."
Chloe

Your cultural or spiritual traditions may require someone to be present, and this may also be a good time to perform any rituals.

Some people find keeping vigil exhausting. It’s easy to forget about your needs while in this situation. Plan to take breaks or, if you want to keep close by, organise shifts with other family members and friends. This is a good time to eat a nutritious meal, have a nap or even go for a walk. You can use a baby monitor so you can hear from another room, if you feel it necessary.

Sometimes people worry that leaving the room could mean missing the moment of death, and they would carry a sense of guilt or regret about this. However, many times people seem to wait to be alone before they die.

Providing physical support

When a person is dying, carers often have lots of questions: Can they hear me? Are they in pain? What can I do to make this easier?

There will probably be gradual changes. The not-so-good days will become more common. Some people are able to continue with their activities, others find they have to pace themselves or spend more time at home.

You do not need to deal with these changes alone. Palliative care professionals specialise in helping people with cancer and their families with end-of-life care. They can help with providing physical, emotional, and practical comfort. To find out more, call 13 11 20.

Changes that occur before death

Some family and friends may prefer more detailed information about the physical process of dying. If this is the case, you may want to keep reading about the changes that occur. Each death is unique, but as a person nears

the final weeks of life they often show common signs. In medical terms the dying process is viewed as the body’s systems closing down.

  • Loss of appetite
    The body needs less energy to keep going and appetite decreases. The person may begin to resist or refuse meals or liquids, and weight loss can occur.
  • Sleeping more
    The dying person has less energy, often spending most of the day sleeping or resting.
  • Disorientation and confusion
    The person may not be aware of where they are or who else is in the room, may speak or reply less often, may respond to people who can’t be seen in the room by others. The person may be drifting in and out of consciousness and possibly entering a coma.
  • Breathing changes
    Breath intakes and exhalations become rattly, irregular and laboured. You may hear a pattern of breathing known as Cheyne-Stokes: a loud, deep inhalation followed by a pause of not breathing for between five seconds to as long as a minute, before a loud, deep breath resumes and again slowly fades out. Sometimes excessive secretions create loud, gurgling inhalations and exhalations, which some people call a ‘death rattle’.
  • Little interest in the outside world
    The dying person may gradually lose interest in those nearby. They may find it hard to concentrate and stop talking. Withdrawing is an aspect of letting go. Near the end, some people can, however, have an unexpected burst of alert behaviour.
  • Changes in urination
    As the person eats and drinks less, they will produce less urine. Loss of bladder and bowel control may happen in the last stages of the dying process.
  • Restless moving, groaning, calling out, twitching or jerking of the body
    These symptoms are often known as terminal restlessness. They occur as waste chemicals (toxins) build up in the brain, and can often be controlled with medications.
  • Cool skin, especially the hands and feet
    As circulation slows down the hands, feet, fingers, toes (the extremities) become cooler and turn a bluish colour.
  • Dry mouth and dry or cracked lips
    This can happen if the person is dehydrated, has been breathing through their mouth or may be due to some medications.

It can be upsetting to watch someone go through these physical changes. It may help to know that they are part of the dying process, and don’t mean that the person is distressed or uncomfortable.

What you can do

If you are providing care at home, ask for help from the palliative care team, district nursing service or other organisations. If you’re using hospice care, the staff will show you how to provide general care and comfort. If the person is in a hospital, nursing home or other facility, ask the staff how family members or friends can be involved.

  • Use soft lighting.
  • Don’t force-feed even though you may be distressed by their loss of interest in eating.
  • Make the bed and chairs more comfortable with cushions.
  • Help the person change positions frequently.
  • Apply lip balm to dry lips.
  • Keep the mouth moist with ice cubes.
  • Use a vaporizer in the room.
  • Speak gently and occasionally remind the person of the time, place and who is there with them.
  • Gently massage their hands or feet with a non alcoholbased lotion.
  • Sit with the person and talk or hold their hand. Often just being with a loved one is all that is needed so that they don’t feel alone.
  • Play their favourite music in the background to create a gentle and peaceful atmosphere.
  • Quietly read a favourite poem, passage from a book or spiritual or religious text.
  • Add bed pads under sheets.
  • Keep the person warm with a blanket. If they complain about the weight of the covers on their legs, keep the blankets loose. As death approaches you may want to consider the following.
  • Ask your doctor or other health professionals who to contact if complications arise at home. Your first reaction might be to call an ambulance, but keep in mind that an ambulance officer’s duty of care means they have to resuscitate. If this is something the person you are caring for would prefer didn’t happen, it’s worth thinking about other options.
  • Find out what the person would like done with their body after they die. Some people have strong views about whether they want to be buried or cremated, what sort of ceremony they want, and what type of memorial they would like.
  • Make a list of people that the person you are caring for would like to have visit in the final weeks.
  • Notify the chosen funeral home that a death is expected soon.
  • Speak to health professionals or palliative care staff about what to expect as death gets closer.
  • Think about who should be present at the time of death.
  • Decide whether a clergy member or other spiritual leader should be at the bedside and what rituals or ceremonies are important to perform.
  • Ask a friend or relative to help let people know after death occurs.
  • Look into closing any social media accounts, such as Facebook and Twitter. Contact them directly for more details.
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, before passing away. Others appear to wait until their family or friends have left the room – even for a short period – before they die.

It can be difficult if you’ve been sitting with your loved one 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’s a fairly common occurrence.

"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. I believe he didn’t want to die with everyone in the room with him, it was nearly like he was looking after us."
Judith

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. The moment of death is commonly described as being peaceful. Many carers say it was a profoundly moving experience and it felt like a privilege to be there. The memory of the final moments of your loved one are likely to stay with you for a long time. Knowing the wishes of your loved one, and working with the health professionals to help achieve them, can mean that the death is described as a ‘good death’.

After the death

Even when death is expected, it’s common to feel shocked. A natural death is not an emergency, and what you need to do depends on the circumstances.

What to do after the death

If death occurs at home, your instinct might be to call an ambulance or the police, but there is no need to do anything straightaway. You can take some time to sit with your loved one. Some people may not want to be alone, so you may want to call a friend or family member. If the person dies during the night, many people wait until the morning to take further action.

When you feel ready, call the person’s doctor and a funeral home. The doctor will sign a certificate confirming the death. This is needed to make funeral arrangements, and the funeral director can lodge the death certificate with the Registrar of Births, Deaths and Marriages. There is no need to call an ambulance or the police.

If the death occurs in a hospice (or a hospital or aged care facility), there’s usually no need to rush. You can have time alone with your loved one 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.

A number of organisations will need to be told of the death. The Department of Human Services has a useful checklist of people and organisations that may need to be notified. Download this from their website, www.humanservices.gov.au.

Funeral and religious services

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

The executor of the will or a family member usually arranges the funeral. If the person has a pre-paid funeral plan, it will usually include details of what they wanted and also which funeral director to use, otherwise you will need to choose. Funeral directors can organise the service, newspaper notices and flowers, and help with many of the legal responsibilities such as registering the death.

"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

You may know the person’s wishes for their funeral or you may need to decide this. One important decision is what the person wanted to happen with their body after death. Knowing what someone would like done with their body after they die can be helpful during the stressful time after their death. Try and have this conversation early on, as some people have strong views about whether they want to be buried or cremated, what sort of ceremony they want, and what type of memorial they would like.

It can be difficult and stressful to make these decisions, especially as other family members may have different ideas about what should happen.

To select a funeral director who is an accredited member of the Australian Funeral Directors Association, visit www.afda.org.au or call 1300 888 188.

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.

Financial matters

You may be eligible for financial assistance after a loved one has died. The Department of Human Services 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 www.humanservices.gov.au.

Cancer Council has several online fact sheets that cover questions about what happens to the superannuation, income, assets or unpaid debts of someone who has died. Call the 13 11 20 to enquire.

Grief

Grief is a natural response to losing someone you love. It can be both a physical and emotional response. The feelings you may experience include sadness, numbness, disbelief, loneliness, and even guilt, anger, relief and acceptance. You might have trouble sleeping, cry a lot or have difficulty crying, lose your appetite, or not be interested in your usual activities.

Many people say grief comes in waves. There’s no right or wrong way to grieve. Everyone mourns in different ways. Sometimes it’s according to religious or spiritual practices but it can also be more personal. Sometimes there is a feeling of relief that your family member or friend is no longer suffering.

How long you experience grief is different for each person. There is no set time, though you might feel pressure from yourself or others to get over it and get on with life. It has been said that time heals all wounds. Many who have lost a family member or friend might disagree. Sometimes you might feel yourself ‘coming good’ and then swiftly go downhill again for a while. Time may help you adapt to the loss, but it may never be completely gone.

For others, feelings of grief don’t seem to improve over time. If you’re concerned that your grief is stopping you from living your life, you may want to talk to a professional. There are several professionals and services available to help people come to terms with their loss and move at their own pace towards a sense of acceptance. Call 13 11 20 for printed information on coping with grief.

Remembering your loved one

You may want to do something special to acknowledge and honour the life of your family member or friend after they’ve died. This can help some people cope with the loss.

There are many ways you can remember your loved one, the following are some suggestions to consider:

  • plant a special tree or flower
  • create an online memorial page with photos and stories
  • display a photo of your loved one
  • frame a cherished note or other memento
  • place a memorial plaque in a favourite place
  • make a contribution to their preferred charity or community group
  • light a candle
  • cook their favourite meal on their birthday

Reviewed by: Dr Melanie Price, Executive Director, Psycho-oncology Co-operative Research Group, Senior Research Fellow, School of Psychology, University of Sydney; Dr Erica Cameron-Taylor, Staff Specialist, Department of Palliative Medicine, Mercy Hospital and Calvery Mater Newcastle, NSW; Gabrielle Gawne-Kelnar, Telephone Support Group Facilitator, Cancer Council NSW; Helpline and Cancer Counselling Service staff, Cancer Council QLD; Judith Quinlivan, Consumer; Linda Wolfe, Consumer; and Dr Mary Brooksbank, Philip Plummer and Claire Maskell Gibson on behalf of Palliative Care Australia.
Updated: 01 Feb, 2014