Chapter 5: Providing Care at End-of-Life

Physical changes in your loved one

There are physical changes that happen to a person as they are moving closer to death. If you know about these changes, they will help you to be better prepared to care for your loved one. You can also help the dying person and others to prepare for and understand these natural changes. The following sections give you information on what you might see.

Loss of appetite

Your loved one will begin to eat and drink less because their body is slowing down. Swallowing might not be easy, and the person might not be interested in eating or drinking. This is a normal part of dying and can be hard for caregivers to accept. You do not have to worry about a person eating if they are not hungry. Forcing them to eat and drink can make them choke. If your loved one wants to eat or drink, give them small amounts of food or fluids.

Bladder and bowel problems

A person has 'incontinence' when their muscles relax and cannot control their bladder or bowel. A catheter (flexible plastic tube used to drain urine from the bladder) or condom catheter (made of silicone or latex and covers the penis like a condom and has a tube attached to it to drain urine) might help to control it and they will have less skin problems. They might urinate less often and their urine might be darker. Your health care provider will be able to give you information on how you can comfort and care for your loved one.

Changes in sleep

When someone is dying, they sleep much more and it is harder to wake them. You might find that the person is often going into a dreamlike state where they seem only semi-alert, even when awake. This is natural. Make sure the room is comfortable for sleeping and resting by offering plenty of silence, dimmed lights, and peaceful surroundings. If they are more awake at certain times in the day, plan short visits for these times.

Your loved one might fall into a deep sleep or coma. At this time, you can speak gently and calmly to the person. Remember that hearing and touch are the last senses to leave a person.

Breathing changes

A person might feel out of breath, also known as dyspnoea or shortness of breath. If you notice this, it is important for you to stay calm and remember that this will not lead to choking or suffocation. You can help by comforting the person and having them change positions. They might appear restless. Calming music, relaxation and breathing exercises might help. Keep as much fresh air and moisture in the room as possible. You can speak with the family doctor about any medications that might help or if oxygen treatment is possible.

You might notice the person is not breathing at all for many seconds. It is common to have irregular or shallow breathing. The person is not in pain but it might be upsetting for you. You might hear odd vocal and breathing sounds, as the person unconsciously uses their vocal cords. These sounds are most likely not a sign of pain. If this worries you, check with the health care team.

The person's breathing might begin to sound louder and wet. This type of breathing is not painful for a person. Saliva at the back of the throat causes this sound, because the person cannot swallow correctly. Turn the person onto their side so that the saliva will rest at the side of the mouth. Talk to a doctor or nurse if there is still wet breathing; they might need to give medication to your loved one.

Mouth Problems

It is common for a person who is dying to have mouth problems such as thrush (a fungal infection, also called candidiasis), mouth sores or dry mouth. White patches (thrush) might appear inside a person's mouth. Your loved one might also tell you that they have a mouth sore or have a hard time to swallow. Look inside their mouth to see if there are any white curd-like patches. You will need to tell your doctor or nurse immediately. The doctor might order medication to treat the thrush.

Mouth sores can also occur and can be very painful and get in the way of eating and drinking. Make sure you gently clean the person's teeth after meals and snacks. In addition, you want to keep the mouth as moist as you can. Offer sips of water as much as they will accept and use lip balm as needed. Do not use mouthwashes that have alcohol in them as these dry the mouth.

Confusion

Confusion is a common side effect of medications. It might be short-term; it can last hours or days, or be permanent.

When your loved one is confused, he or she might:

  • not remember you
  • be suspicious of everyone
  • begin to talk about things that make no sense
  • be forgetful
  • mix-up the days and nights
  • act strangely
  • hallucinate (see or hear something that is not there)

Dehydration can cause confusion, hallucinations or other changes. Stay with your loved one when they hallucinate, and try to help them stay calm and relaxed. It is very important to tell the doctor about any hallucinations.

When your loved one cannot remember you, tell them who you are in a nice and calm voice. Use photos or favourite pictures to help them remember you, family members or friends. Treat them with compassion and kindness. They need to be with people and need to see that you understand. They might not remember you but they still remember kindness and love.

Last Days of Life

A person's condition continues to weaken as they move towards the final days before death. The person goes through changes as their body shuts down.1 Here is some information on what you might expect:

Social withdrawal

A person who is dying will often start to isolate themselves from those around them. They might let go of your hand or turn to face the wall. They do not mean to insult you; they just need to let go and prepare to leave this world.

A person might show many of the signs listed above and then all of a sudden, they can get better for a while. This might be hard to accept for some caregivers. You might expect your loved one to die one day and then find them suddenly doing much better the next. Try to take things one day at a time and handle the challenges as best as you can.2,3

Changes in level of awareness

In the final days, your loved one might not be able to think clearly and might react differently to the environment. These changes often happen at the same as the physical changes. They might:

  • not be able to follow simple instructions
  • be restless or angry for no reason
  • not be able to say what they are thinking
  • not remember or know what something is
  • have hallucinations
  • doze in and out of sleep
  • sleep all the time1

As death is getting closer

The body goes through changes, as death is getting closer. This is what you can expect:

  • Changes in breathing - respirations (breaths) become shallow, quicker or slower. They might find it hard to breath or they might not breathe at all at times. You might hear rattling or bubbling noises in the throat or chest.
  • It might be too hard for them to swallow.
  • Their heartbeat might not be regular.
  • They might get more restless.
  • They might be less conscious.
  • They might not want to eat or drink.
  • They might urinate less and it might be dark in color or they might not urinate at all.
  • Their skin might be cold and purple (mostly the arms and legs).1

At the time of death

Here is a list of things or signs that will tell you that your loved one is dead.

At the time of death, the body stops working:

  • They will not breathe and they will not have a pulse.
  • They will not react to sound, touch or movement.
  • Their eyes are in a fixed position and can be opened or closed.
  • They might urinate or have a bowel movement.
  • The muscles in their face and jaw will relax and their mouth might open a little.1

Give us your feedback

Please share your comments or concerns on this section of the Guide. Your comments are important to us. We appreciate and thank you for taking the time to complete this short Feedback Survey. If at any time, you wish to speak with a nurse at Ottawa Public Health please call 613-580-6744 TTY/ATS: 613-580-9656 or email us at healthsante@ottawa.ca.

References

  1. MacMillan, K., Peden, J., Hopkinson, J. & Hycha, D. (2004). A Caregiver's Guide: A handbook about end of life care. Ottawa: Military and Hospitaller Order of St. Lazarus of Jerusalem and Canadian Hospice Palliative Care Association.
  2. Van Bommel, H. Family Hospice Care. (2006). Available from: www.legacies-inc.com/family-hospice-care/#cc-m-product-4885016969
  3. Edmonton Regional PalliativeCare Program. What to expect as the final stage of death approaches. Available from:  http://www.palliative.org/NewPC/_pdfs/grief/WhatToExpect-FinalStageOfDeath.pdf

Planning for an expected death

Some people want to make plans before they die. This gives you more time to make choices about arrangements. It will also allow you to visit with family and mourn your loss at time of death without worrying about details. Encourage the person to be involved and in control as much as possible in pre-death planning. You might want to contact or visit a funeral home to make arrangements.

Checklist: Preparing for the end

  • Make a list of phone numbers of family and friends to call after the person has died.
  • Include the names and phone numbers for the funeral director and doctor.
  • List the names and phone numbers of those you can call on a 24-hour basis such as a health care provider  that you can call in the middle of the night if you have a DNR (do not resuscitate) order in place. Do NOT call 911 or emergency services.

Take all the time you need to spend with your loved one after they die. This might be the only time you have to say goodbye, cry and talk to him or her and to other family members and friends. You do not have to call the doctor or funeral director right away. Follow your cultural or religious customs and when you are ready, (this could be several hours later) call your doctor to tell them that your loved one has died. If they die during the night, it is okay to wait until the morning to call the doctor.

You will have to call the doctor at some point to let him or her know that your loved one has died. He or she will come over and issue the certification of death.

Understanding Grief

People usually grieve when they are trying to accept the death of a loved one. Grief is a normal part of the healing process. It helps people let go of the past and move on to a life without the loved one.1

Before or after the death of a loved one, you might feel a number of reactions to grief:

Normal physical reactions

  • your stomach feels empty
  • your chest feels tight
  • your heart feels like it is pounding or racing (palpitations)
  • you are weak and do not have any energy
  • your stomach is upset
  • you gain or lose weight

Normal emotional reactions

  • you feel sad
  • you are afraid
  • you are angry
  • you feel guilty
  • you feel lonely and alone (isolated)
  • you feel a need to go over what happened at the time of the death

Normal cognitive reactions

  • disbelief (you do not believe that your loved one is dead)
  • denial (you will not believe that your loved one is dead)
  • confusion
  • lack of concentration
  • constant thoughts and dreams about your loved one

Normal social reactions

  • being on auto pilot (you do the things that need to be done without realizing that you are doing it)
  • isolating yourself from others (you stay away from other people, family and friends)
  • dependence on others (you rely on people around you to do things for you)
  • fear of being alone

The Experience of Grief

There are many ways to explain the grief process. Remember that there is no set order to what you will feel. Every person follows a different path in life and every person goes through grief in a different way. Do not compare how you react to grief with how others are dealing with it. Individuals react to a loss and experience grief with their whole beings, minds, bodies and spirits. There is no right or wrong way to grieve.

People who have suffered the loss of a loved one often go through stages such as:

  1. Accepting the loss: It is normal to experience certain emotions:
    1. You might feel shock, doubt or have no feeling.
    2. You might feel that it is too much and have physical reactions like heart palpitations, crying, and physical symptoms of shock.
    3. You might feel relieved for the deceased because they are not suffering anymore.
    4. You might feel relieved for yourself because you no longer have the stress of being a caregiver.
  2. Feeling grief: When the shock starts to go away and you start feeling again, you might start to feel the emotional pain of grieving. It is common to:
    1. be sad, angry, anxious and restless
    2. feel guilty, regret
    3. not sleep well
    4. stay away from others.
  3. Learning to live on your own: Learn how to live without your loved one. Start a new hobby or go out more. Physical symptoms and emotions will get easier with time and when you think of your loved one, it will be less painful.
  4. Rebuilding a new life: Use your energy to start new activities and relationships while you are grieving.1,2

How long does grief last?

It is hard to say how long you will be grieving. Many people find that grief comes and goes over time. There might be good days and bad days. After a few months, the strong feelings reduce. It might take months or longer for you to return to normal. It gets easier to cope as time goes on but it might take longer for you to do some of the things you enjoyed doing with your loved one . Although you are able to rebuild your new life, it might take years for you to feel that you can live without your loved one. There might be days, memories or events that will make you sad; these feelings do get better and become part of your life.

Caring for yourself and grieving

Grieving can be a painful experience. Learning to cope with grief can be hard. It is easy to avoid many emotions by keeping busy with work and family and telling yourself that you need to be strong for everybody else. However, you need to experience grief or it can cause more stress later on.

There is no easy way to cope with grief - different things work for different people. The following are ideas for coping with grief. Try to find things that work best for you and your loved ones. Remember, coping with grief takes time and you will not feel better overnight.

  • Talk and listen while you grieve; share your feelings and listen to others.
  • Be with caring people who love you.
  • Tell others that you need help and how they can help. Accept help from others.
  • Share with yourself; write in a diary or journal, draw, paint, sing, and dance - show yourself who you are and how you are feeling.
  • Accept your emotions and allow yourself to feel the pain. Allow yourself to cry. It can help you to show your pain to others.
  • Be patient with yourself and take it one day at a time. Grieving takes time and you need to allow yourself to grieve at your own speed.
  • Accept the loss. It is natural to deny that your loved one has died, but as times passes, it is important to accept the loss and move on with your life. Let go of his or her belongings; it might take time but it will show that you are accepting the loss.
  • Let go of the grief when you are ready. Do not forget your loved one, but let go of the grief so you can remember happier times with your loved one.
  • For some grief can turn into depression. They may benefit from additional supports like grief counselling, bereavement support group and/or a prescription for antidepressants.
  • Take care of yourself! Take time to look after your emotional, physical and spiritual health.
  • Do not force yourself to do things you do not need or want to do. Set limits and stick to them.
  • Do not make any big life changes.
  • Try to reduce how much you smoke, drink alcohol, and take other medications or chemical substances to reduce anxiety.
  • Try to do some of the things you used to do when you are ready.
  • Remember the good times you shared with your loved one.1,3

Children and Grief

Talking to children about death:

It can be hard for you to talk to a child about someone who is dying. Most people want to protect children from what is happening. All children go through losses and they need help to learn how to deal with them. Talk to children in an open and honest way about death and dying. Children are often able to feel or see that something is going on; do not hide it from them. Start by finding out what the children know and how they feel about their loved one dying. Tell the children what is going on and let them ask you questions and show you how they feel.2

Give children information about the end-of-life and let them know what is going on inside the family. It helps them to learn to trust others and trust their own ideas about end-of-life. It also lets them work through their feelings with other people.2

Children do not grieve like adults. What they understand and how they deal with a loss depends on their stage of development. Children might not know the words to tell you how they feel and their behaviour might change because they are having a hard time dealing with the loss.

  • All ages feel sadness, loss and pain, are afraid of dying and being alone.
  • All ages might feel guilty about what the dying person is going through. Children under three do not understand that death is forever.
  • Children under 10 might be afraid of getting sick and dying. If a parent dies, they might worry that the other parent will die too.
  • Children over 10 realize what is going on but might not be able to talk about it.

Encourage the children if they want to go to or be included in the funeral or service. Tell the children what will happen so they know what to expect; be ready to answer any questions they might have during this time.1,2

Supporting children

You can get children's books about grief at local libraries, bookstores or hospice organizations. Here is how you can give comfort to children:

  • Tell the children that a loved one is dying. Tell them the truth and listen to what they are saying. Give them time to ask questions and to share their feelings.
  • Avoid using words such as: "passed away", "gone to heaven" or "sleeping"; these words might confuse them. Use the real word 'death' or 'dying'.
  • Make sure that the children know that sick people do not always die. Remind them that you love them as much as before.
  • Tell children that what they are feeling is normal and it is okay to cry. Help them to show their feelings by talking, painting, coloring, puppets and music.
  • Try to keep children's routines the same as before.1,2

The Canadian Virtual Hospice website has more information about talking to children about death.

Where to get help

End-of-life can be a hard time for caregivers especially when children are involved. Talk to a person on the health care team involved in the care of your loved one. They might be able to help you and offer information about resources that can help you. Funeral homes can also be a good place to find help.

Give us your feedback

Please share your comments or concerns on this section of the Guide. Your comments are important to us. We appreciate and thank you for taking the time to complete this short Feedback Survey. If at any time, you wish to speak with a nurse at Ottawa Public Health please call 613-580-6744 TTY/ATS: 613-580-9656 or email us at healthsante@ottawa.ca.

References

  1. MacMillan, K., Peden, J., Hopkinson, J. & Hycha, D. (2004). A Caregiver's Guide: A handbook about end of life care. Ottawa: Military and Hospitaller Order of St. Lazarus of Jerusalem and Canadian Hospice Palliative Care Association.
  2. McClement, S., and S. Stenekes. Talking with children and youth about serious illness. Canadian Virtual Hospice. 2009. [reviewed 2011]. [cited 2013 Jul 18]. Available from: http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Communication/Talking+with+Children+and+Youth.aspx
  3. Edmonton Regional PalliativeCare Program. What to expect as the final stage of death approaches. Available from:  http://www.palliative.org/NewPC/_pdfs/grief/WhatToExpect-FinalStageOfDeath.pdf

Understanding Hospice Palliative Care

This section is for people caring for loved ones who are at the end of their lives. While the last stage of life or "end-of-life" might be a long time for some people, it might be short for others.

You might have many questions about taking care of your loved one. What are the right things to say? What are the right things to do? You need skills such as communication, compassion, patience, and practical hands-on care to give care to a dying person. These skills will help you find out what they need and prefer physically, emotionally and spiritually.

Palliative care, hospice care or hospice palliative care all mean the same thing. The goal is to make your loved one comfortable and make this time the best it can be. It will also help you understand how to take care of a dying person.2

Palliative care:

  • looks at what is important for the dying person and their family
  • helps with pain, not wanting to eat, confusion and other physical symptoms
  • looks at the person's emotional, spiritual, social and cultural needs
  • respects the person2

A group of people called the health care team provides palliative care for your loved one. They could be volunteers, social workers, spiritual leaders, doctors and nurses.2

You can give palliative care in hospitals, homes, residential or nursing homes, dedicated hospices and other locations.

Sometimes, family and friends give palliative care with no outside help. As a caregiver, you might be the main person who gives this care. You might want to ask for help because this type of care is hard to do alone. Professional and volunteer groups in the community can help you to give palliative care.

A first step is for you and the dying person to decide what type of care you think they need. You might want to speak with doctors and nurses who are giving the care right now.

If you are making an appointment to talk about this ask for a longer appointment. Tell the doctor why you are there and why you want to talk to them.2

Practical Information for Caregivers

Your need for information

Your loved one needs more than hands-on care. They need information about their condition.

Some people might want to know every detail; others might not.3

Questions to ask your loved one:

  • What type of care do they need?
  • What medications do they take?
  • How do they manage pain and treatment?
  • What information do they want to know?
  • Who do they want to share that information with?4

When you get information from their health care providers, you can share this information honestly with your loved one. This is a way of helping them feel valued, educated, and in control.

Questions to ask health care providers

Sometimes it is hard to know what questions to ask or what information might be important.3 Review this list of questions with members of the health care team:

  • What is happening to your loved one? What is the expected outcome?
  • Is your loved one dying? What can you expect when they are dying? What will this look like?
  • Will your loved one be in pain?
  • What care will your loved one need?
  • What should you do if you are not able to cope with this?
  • Who can you call if you have questions or need help?

Financial considerations

Caring for your loved one towards end-of-life can be financially stressful. How do you know what to do first and for whom? How do you handle work, care for your children or other family members? The Canadian Federal Government has a program to help caregivers who are caring for loved ones at the end-of-life.

Find out about Compassionate Care Benefits 

Each provincial and territorial government has different policies and benefits for caregivers that might help. The following is a list of other resources:

Tips

If you are having financial problems, your health care team can find a social worker to help you. Social workers work in many places like hospitals, community health centers and social service agencies. They might be able to help you with some of the challenges that you are facing.

Give us your feedback

Please share your comments or concerns on this section of the Guide. Your comments are important to us. We appreciate and thank you for taking the time to complete this short Feedback Survey. If at any time, you wish to speak with a nurse at Ottawa Public Health please call 613-580-6744 TTY/ATS: 613-580-9656 or email us at healthsante@ottawa.ca.

References

  1. GIVEN, B., C. W. GIVEN et P. R. SHERWOOD. « What knowledge and skills do caregivers need? », American Journal of Nursing, vol. 108, no 9, 2008, p. 28-34.
  2. Canadian Hospice Palliative Care Association. Living Lessons - A guide for caregivers (2009). www.chpca.net/family-caregivers/living-lessons.aspx
  3. Russell S., J. Browne, and S. L'Estrange. Talking about dying: Where and how we choose to die. Research report. Research Matters. 2004. [cité 19 juillet 2013]. Available: http://www.research-matters.com.au/publications/DyingReport.pdf
  4. von BOMMEL, H. Family Hospice Care, 2006, Available from www.legacies-inc.com/family-hospice-care/#cc-m-product-4885016969

Managing physical symptoms

The goal of hospice palliative care is to provide comfort for your loved one by managing their physical and other symptoms with medication and other therapies like massage and relaxation exercises.1

Pain

When your body gets hurt, it causes pain. Your loved one might feel physical pain or discomfort because of their illness. Pain is a personal experience and each person experiences it differently or describes it in different ways. One person might say his or her pain is very strong (severe) but another person that has the same pain might say that it is not as strong (moderate).2

You have to measure the pain to control or treat it. Living with pain can make you tired physically and emotionally. Your loved one might feel afraid, anxious, sad, angry or tired and these feelings can make their physical pain feel worse. Nausea or shortness of breath can also make their pain worse. Measuring pain is ongoing.

You can help to manage the pain of your loved one by listening when they complain of pain. Each person experiences pain differently. When describing the pain of your loved one to the health care team, it is important to go into as much detail as possible.

These questions will help you give the doctor or nurse information about your loved one's pain. They will then be able to help control their pain. You can also use these questions to get information about other physical symptoms:

  • When did the pain [symptom] start?
  • What were you doing when it started?
  • Where is the pain?
  • What does the pain [symptom] feel like? (describe your pain)
  • Have you had a pain [symptom] like this before?
  • How bad is the pain [symptom]? Using a scale of 0 to 10, how would you rate your pain [symptom]? (Zero is that there is no pain and 10 is the worst pain ever).
  • How long does it last?
  • Does anything make the pain [symptom] better? Does anything make the pain worse?
  • Does taking your medication or other treatments stop the pain [symptom]?

Medications to manage pain

Many pain medications treat different types and levels of pain. Your loved one might believe they should only ask for help when the pain becomes impossible to handle. There is no reason for your loved one to suffer through any pain. If they wait too long, the pain might be harder to control and it might take longer for the medications to stop the pain. The goal of treating pain is to prevent it from happening at all.

People use opioid analgesics (narcotics) most often to control pain. Opioids reduce or sometimes block the pain so that you no longer notice it.

Some names of opioids are:

  • Morphine
  • Hydromorphone
  • Oxycodone
  • Fentanyl

You, your loved one and your healthcare team should be able to find ways to control the pain and make your loved one feel comfortable. Many people find that medication helps with pain and they are happy with their pain control. Sometimes it might not be possible to make all the pain go away, but the pain is better handled.

What you can do to help manage pain

You can play an important part in controlling pain by asking if your loved one has pain or other physical symptoms and asking the health care team for help.

Make sure your loved one takes their pain medication. This will help keep the medication in their body at the same level and make sure that the pain control is continued.

They should not stop taking the medication. A sudden change in medication levels might cause side effects. If you or your loved one is worried about taking a medication or having side effects from it, talk to the health care team to discuss other choices.

It might take a few days for you, your loved one and the health care team to decide what the right amount of medication is and how often they will need to take it. The dose should be enough to control pain until the next dose.

Here are some questions to ask:

  • What pain medications will they need? Are there any dangers or side effects?
  • Will the pain medicines stop working if they take them too often? Will they start to depend on them?
  • Can the pain medicines stop their heart or cause them to stop breathing?

Controlling other physical symptoms

Your loved one might have other physical symptoms like nausea, vomiting and shortness of breath. The healthcare team can help to take care of these symptoms. It is important to tell you healthcare team about these symptoms.

Here are some ways to help your loved one with their physical symptoms:3

Ask questions:

Try to encourage the person to talk about their symptoms. Ask them to describe the symptoms in as much detail as possible. Things might change over time, so it is important to ask questions about symptoms often and give this information to the health care team. Go back to the questions on managing pain earlier in this section and ask your loved one to answer each one of them.

Report symptoms early:

Symptoms (like pain or nausea) are easier to deal with when you report them early and you have a plan to manage them. If your loved one develops a symptom, report it to the healthcare team and follow the plan of care that the team has agreed to. This plan might include taking regular doses of medications.

Consider other options:

There are many ways to help with your loved one's symptoms. If the first choice does not work, try speaking with your health care team about other options. There are non-medication choices that might help you to manage your loved one's symptoms. These might be things like relaxation techniques, massage, and music. It is best to look at these therapies with the health care team, to make sure they are safe for your loved one.

Keep a diary:

Use a diary to write down what symptom your loved one has and what level of pain they have. You can also put down what medications you gave them. Share this diary with the health care team. You and your healthcare team can use this diary to list information over time and to write down changes in medications and other treatments.

Understand medications and their side effects:

Your loved one might want to know what kind of medications he or she is taking. Learn about the medications and what side effects to expect. You can then explain them to your loved one. For example, many pain medications can make you constipated. There are bowel medications to help with constipation so ask the health care team about them. Report any medication side effects to the health care team as soon as possible so that they can help your loved one cope with it.

Encourage relaxation and fun:

Laughter releases endorphins (natural painkillers) in the body. People who have social contact and have positive moods often handle pain better. Plan things that your loved one likes to do such as watching a good movie, listening to relaxing music, reading a good book or hearing and telling funny jokes.

Emotional and Spiritual Needs of Someone in the Last Stages of Life

People who are dying have many emotions and some that you might not have seen before. It is normal for a dying person to grieve the loss of his or her own life.

Common emotions are:1,4

Uneasiness - A person might feel nervous about their future and the idea of dying.

Anger - The person might yell, be sarcastic, or get angry towards others. The cause of the anger might be the illness, a medical procedure that is not working or the person might just feel upset with the way things are right now.

Guilt - Sometimes people feel that they have become a burden to their family or friends; they might also blame themselves for needing care.

Embarrassment - As care increases and the dying person depends more on others, they might feel embarrassed.

Sadness - It is normal for a dying person to feel sad as they think about life after their death. They might also be sad that they are no longer able to do things they enjoy because of their illness.  This can also make them feel lonely. Sadness does not always mean that a person is depressed.

All of these emotions are common and normal. It can be hard for you as a caregiver to see and feel them. Ask the dying person to share their feelings and find out what might be causing them. Talk openly with him or her; it will help you understand what they are going through.

Sometimes there are no answers to a problem. You can help by listening to the dying person and encouraging them to share their emotions.

Remember, you are not doing this alone. People such as doctors, nurses, spiritual leaders, social workers and volunteers can help to support you and the dying person.

Spiritual needs

Spirituality has many meanings. It can mean 'that which gives people meaning and purpose in life'.5 Spirituality is not religion, but religion is a way for a person to express their spirituality. Some people say that religion helps them find meaning or helps them to understand why people suffer. It gives them purpose and helps them to deal with their doubts in life.5 Spirituality is an important part of the last stages of life. Even if they did not express spirituality before, some people might want to talk about their beliefs and get help. This support might come from spiritual leaders, religious representatives, social workers, doctors, nurses, friends and family.

Give us your feedback

Please share your comments or concerns on this section of the Guide. Your comments are important to us. We appreciate and thank you for taking the time to complete this short Feedback Survey. If at any time, you wish to speak with a nurse at Ottawa Public Health please call 613-580-6744 TTY/ATS: 613-580-9656 or email us at healthsante@ottawa.ca.

References

  1. Van Bommel, H. Family Hospice Care. (2006). Available from: www.legacies-inc.com/family-hospice-care/#cc-m-product-4885016969
  2. Edmonton Regional PalliativeCare Program. What to expect as the final stage of death approaches. Available from:  http://www.palliative.org/NewPC/_pdfs/grief/WhatToExpect-FinalStageOfDeath.pdf
  3. Nursing Best Practice Guideline: Assessment and management of pain. Registered Nurses Association of Ontario. 2007. Available from: http://rnao.ca/bpg/guidelines/assessment-and-management-pain.  2013.
  4. Pain Control for people with cancer. National Cancer Institute. 2009. Available from: http://www.cancer.gov/cancertopics/coping/paincontrol/page1
  5. Puchalski, C.M., R.E. Dorff, and T.Y. Hendi. Spirituality, religion, and healing in palliative care. Clinics in Geriatric Medicine. 2004 Nov; 20(4):689-714.

Your emotions as a caregiver

You might feel many emotions as a caregiver. Some caregivers find it easy to deal with these emotions while others find it hard. Here are some common emotions you might feel:

Grief

Anticipatory grief is grieving the loss of someone that starts long before the death happens. You might feel very sad and have mixed emotions about the death. Some days you might feel ready for your loved one to die. On other days, you might feel it is too much to handle and you feel you need more time with your loved one before letting go.

Guilt and regret

You might feel guilty for what you might have done or not done when the person was well. You might also feel angry or sorry for what your loved one did or did not do for you. Do not ignore or deny these feelings. Accept them but do not dwell on them. You might want to look for help or counselling to work through these feelings.

Hopelessness or helplessness

You might not be as strong as others might when it comes to dealing with death. Your loved one might be going through things that will be hard for you. You might feel helpless and find comfort in your faith or your spirituality at the same time. You might have a certain poem or holy verse that will comfort you.

Anger and feeling at peace

You might feel angry. Allow yourself to feel this emotion. You might be angry for many reasons. You might be upset because you feel that your family and friends do not understand. Some caregivers say they felt angry because some people were helpful when they found out what was wrong but were not helpful at the end-of-life. You might also feel angry with health care providers because you might think that they do not know what it is like for you. Your anger might be with God for taking your loved one away, with the people in your family for not helping more, or with the dying person for leaving you. The anger will pass with time. You can still find time to laugh. Many caregivers say that they feel peace when they are caring for someone at end-of-life. This peace might come in knowing that you are giving comfort to your loved one. This can be a hard time, but also a special time filled with precious moments and rich memories.1

Complicated Grief

Some people have a very hard time adjusting to their loss. Complicated grief is profound sorrow that gets worse as time passes. People with complicated grief have trouble moving on with their lives and may become depressed.2

If you have complicated grief, it is important to get help. Speak to your doctor about treatment. You may also find it helpful to speak to a mental health professional.

For more information visit: Canadian Cancer Society

Tips for caregivers providing end-of-life care

Encourage independence and control

People who are dying have the right to be involved in their care and make decisions if they can. This helps them feel in control of their lives. Encourage them to be involved in the care planning process and offer them ideas.

You can still give control to a person who cannot speak or is mentally confused. Let them do things for themselves. You can ask very simple questions like, "Would you like to be turned now?" You can also offer choices: "Would you like to wear this red sweater or this orange shirt?" They might be able to point to clothes they want to wear.

Keep routines and special times together

One way to help at end-of-life is to allow time for special routines or events each day or week. You could read a book, look at photo albums, pray together, or listen to music. Try to find activities that the dying person can help with and make him or her feel important and valued by others. Ask your loved one for advice on an important subject, or ask him or her to help you make a quilt or scrapbook of memories.

Be present

Being there for the dying person can make their end-of-life more meaningful. Others might also wish to be there and you can bring these people to visit. Make a schedule with family members and friends. Ask the dying person for their permission before you allow others to visit. You can also find somebody to set up this schedule instead of doing it yourself.

Allow time alone

Give your loved one time alone. They might need some time to think about the past and prepare for their death. Let the dying person guide you. If you feel that the person wants people close by then give them that chance.

Support feelings

Some people might not want to talk or be able to talk about their feelings, while others might find it a great relief to tell you how they feel. Let your loved one share his or her feelings. Be patient and calm. If you cannot handle this sort of talk, think of other people who could talk to your loved one. It could be a family member, friend, or spiritual advisor.

Touch and talk

Two of the most important human senses are hearing and touch. They are an important part of communication. Smiles and hugs can be as important as talking. If a person cannot talk, or if they are pulling away from talking with others, then a gentle talk, touch and eye contact can help.

Laura, a caregiver to her grandmother, remembers:

"My grandmother was not an overly 'touchy' person, but when she became sicker, I noticed that she started to enjoy it when I rubbed her back and held her hand to let her know I was there. This became a very important part of our time together."

Be respectful

Treat people who are dying with respect. Do not talk about them when you are in the same room; and do not talk in the past tense (use "she is not as strong as she used to be"; do not use "she was so strong"). The sense of hearing is the last sense to leave a person. Be respectful of the person's values and beliefs. This is important even if you do not agree with them.

When Kate (a woman dying of leukemia) was being interviewed by a Canadian radio station, she said that she did not like how people around her preached to her about religion. Kate talked about how she really just wanted people to respect her own religious beliefs during her time of dying.

Don't be afraid to talk about death and to say goodbye
It can be a relief for a dying person to talk to others about what is happening. It can be emotionally comforting to know they can talk about their fears and wishes. Involve your loved one in the pre-death planning (funeral arrangements) if your loved one wants to and is able to. Let him or her guide the conversation about death.

Take care of yourself and know your limits

This is an important time and very hard time in your life. Be good to yourself and take breaks. Take care of yourself so you can help take care of your loved one. Rely on family, friends, volunteers and the health care providers for help. If you can no longer care for your loved one in the home, think of a different place for them such as a residential hospice or palliative care unit. Do not be ashamed to ask for help.

Jane is a caregiver who found it easier to deal with her role as caregiver for her mother-in-law at the end of life when she used humour to help her cope with the situation. Sometimes a joke makes a time of stress easier to deal with. It helped the two women remember about the laughter they shared during their lives together.

Be yourself

The best gift you can give someone at his or her end-of-life is you! If you stop acting as you normally do, your loved one might feel uncomfortable. If you have always been a joker, continue to tell jokes. If you like to talk, keep being your chatty self (within reason). Live your life as normal as possible.

Simply being there is extremely important. You do not have to worry about the right thing to say or do. There are no rules.1 2

Give us your feedback

Please share your comments or concerns on this section of the Guide. Your comments are important to us. We appreciate and thank you for taking the time to complete this short Feedback Survey. If at any time, you wish to speak with a nurse at Ottawa Public Health please call 613-580-6744 TTY/ATS: 613-580-9656 or email us at healthsante@ottawa.ca.

References

  1. Edmonton Regional PalliativeCare Program. What to expect as the final stage of death approaches. Available from:  http://www.palliative.org/NewPC/_pdfs/grief/WhatToExpect-FinalStageOfDeath.pdf
  2. Canadian Cancer Society. (Internet). Toronto: Grief and Bereavement. c2013. (cited 2013 Nov 7); (about 4 screens). Available from http://www.cancer.ca/en/
  3. Van Bommel, H. Family Hospice Care. (2006). Available from: www.legacies-inc.com/family-hospice-care/#cc-m-product-4885016969

Resources

Provincial

Assistive Devices Program (ADP) - Ontario Ministry of Health and Long-Term Care
1-800-268-6021
www.health.gov.on.ca/english/public/program/adp/adp_mn.html

National

Canada Pension Plan Disability Benefits
1-800-277-9914
http://www.hrsdc.gc.ca/eng/disability/benefits/index.shtml

Canadian Virtual Hospice
Information and support for living with life-limiting illness, end of life, loss and grief

www.virtualhospice.ca

Changes Toolkit
Canadian resources and tools for palliative care patients and their family caregivers

www.changestoolkit.ca

Compassionate Care Benefits
www.servicecanada.gc.ca/eng/ei/types/compassionate_care.shtml#Definition

Doris Inc: A Business Approach to Caring for Your Elderly Parents, by Shirley Roberts. Available at bookstores or
http://ca.wiley.com/WileyCDA/WileyTitle/productCd-1118100220.html

Saint Elizabeth Health Care - Caring for Family - Palliative Care and End of Life
www.saintelizabeth.com/Caring-for-Family/Caregiving-Information/Caregivers-Palliative-Care-Guide.aspx

Veterans Affairs Canada - Health Benefits
1-866-522-2122
http://www.veterans.gc.ca/eng/services/treatment-benefits

International

Best Endings - Making it easier to talk about and plan for life's end
www.bestendings.com

Additional Resources: Communicating with children

  1. Brown LK, Brown M. When dinosaurs die. A guide to understanding death. New York, NY: Little Brown Books for Young Readers; 1996.
  2. Eaton RC. Living dying. A guide for adults supporting grieving children and teenagers. Toronto, ON: Max and Beatrice Wolfe Centre for Children's Grief and Palliative Care; 2008.
  3. Hamilton J. When a parent is sick. Helping parents explain serious illness to children. Halifax, NS: Pottersfield Press; 2001.
  4. Silverman PR. Never too young to know. Death in children's lives. New York, NY: Oxford University Press; 2000.
  5. Buscaglia L. The fall of Freddie the leaf. A story of life for all ages. New York, NY: Henry Holt & Company; 1982.
  6. Mellonie B. Lifetimes. A beautiful way to explain death to children. Toronto, ON: Bantam Books; 1983.

Give us your feedback

Please share your comments or concerns on this section of the Guide. Your comments are important to us. We appreciate and thank you for taking the time to complete this short survey Feedback Survey. If at any time, you wish to speak with a nurse at Ottawa Public Health please call 613-580-6744 TTY/ATS: 613-580-9656 or email us at healthsante@ottawa.ca.

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