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"We'll walk with you along the way..."
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Family is part of the care unit

Dying is a natural part of life. However, many people don't know how to care for someone at the end of life. Most of the time, it can be a new and scary experience. It's normal to have a wide range of feelings.
The family and caregiver may feel unsure of themselves. At times you may feel as if you're on a roller coaster because you don't know what to expect next. Family, friends, and caregivers play an important supporting role. At the end of life, it's not so much what you say or do. Just being there can provide a sense of protection and comfort.
Each person's dying experience is unique. No one can guess what it will be like or when it will happen. However, we are here for you and "We'll walk with you along the way..."
Goals at the End of Life:
  • Have a sense of completion in relationships in their community.
  • Have a sense of meaning about one's life.
  • Experience love of self and others
  • Have a sense of completion in relationships with family and friends.
  • Be at peace about the finality of life.
  • Have a sense of meaning about life in general.
  • Give into the unknown -- to be able to let go.
  • Have a sense of completion with worldly affairs.
Confusion:
People nearing the end of life may seem confused at times. They may not know what time it is, where they are, or who you are. They may say that they see things that no one else can see. They may talk to people who are not there, or who have already died.
People near the end of life will sometimes talk about travel, as if they are planning a trip. They may say things such as; "I want to go home" or "I need to pack for my trip."
This is known as "symbolic language" -- when things that are said mean something else. It may be one of the ways people let us know that they are ready for death. They could be trying to tell us goodbye.
When this happens, we may think the medicine is causing the confusion. However, this is a normal part of dying. At each visit, the hospice nurse will check the medicine being given and consult the doctor. They will make sure the person is getting the correct dose. They will adjust and change the medication during interdisciplinary team meetings.
What you can do:
  • Let the hospice nurse or other care team members know if the person is confused. They will show you how to best support the person at the time.
  • If appropriate, try to remind the person who you are. Remind them of what you are going to do. Point our familiar things in the room.
  • Provide reassurance. Let the person know you are there to take care of them. Tell the person that you will keep them safe.
  • Limit visitors. This can help lessen confusion.
  • Let the person tell you what they see without trying to argue it away. What the person sees is real to them, even though it may not seem real to you.
  • Listen carefully. There may be meaningfull messages being shared in symbolic language.
  • You may want to write down the important things that happen. A journal may be a source or comfort to share with others later.
Wave of Energy:
Dying loved ones may show sudden waves of energy. These usually don't last long. Sometimes the person may be surprisingly alert and clear. They may ask to eat when they haven't eaten in days. They may want to get up to visit when they haven't been out of bed for days or weeks.
Waves of energy don't always happen in such big ways. They can happen in small ways, like the person being awake more. It's easy to see how this can give a false hope that the person is getting better. However, it is not likely. The person may be building up strength for the last full-body moments of life.
What can you do:
  • Enjoy the time for what it is.
  • Use the time to share memories and say goodbye.
  • Be together holding hands.
  • Would be appropriate to have guests.
Inspirational poems to share with your loved one:
  • "Invictus" is a short Victorian poem by the English poet William Ernest Henley
  • "The Road Not Taken" By Robert Frost

  • "Do not go gentle into that good night" by British poet Dylan Thomas
  • "O Captain! My Captain!" By Walt Whitman


  • Genesis 3:19 from the Bible
  • Psalm 23:1-6 from the Bible

"We'll walk with you along the way..."
Withdrawal:
It's normal for dying people to begin to withdraw or pull away from the world around them. This might start as early as months or weeks before death. They may stay in bed all day. Or they may spend more time asleep than awake.
With withdrawal comes less of a need to talk. Touch and silence take on more meaning. People at this point may not respond to you or may look like they're in a coma. This may be their way of getting ready to let go.
What can you do:
  • Speak to the person in your normal tone of voice. People can hear until the end.
  • Call yourself by name when you speak. Tell the person who you are and what you are going to do before you do it.
  • Remember not to say anything in front of the person that you would not say if he or she were awake.
  • Plan visits for times of the day when the person seems more alert.
Restlessness and Anxiety:
At times, the person may appear restless, or unable to be still. They might make the same motions over and over again.
This is common and could be due to a number of reasons. Restlessness can be caused by a lack of blood flow. This causes less oxygen to flow to the brain. Sometimes anxiety (being worried or tense) can be a sign of physical discomfort or pain. Emotional or spiritual concerns can also make the person worried and tense.
What can you do:
  • Let the hospice nurse know if the person is restless or tense. The nurse will look for any discomfort or pain.
  • Continue giving medicines as prescribed.
  • Ask the hospice social worker or chaplain to speak with the person about what they are feeling. The social worker or chaplain can provide support.
  • Keep the person's space calm, clean, and reassuring. Speak slowly with a soothing tone of voice.
  • Help the person resolve issues. Taking over any tasks that still need to be finished can be a relief. See if others can help complete tasks.
  • Read something inspiring or uplifting.
  • Play soft music or their favorite music.
  • Bring comfort by holding hands or providing a gentle touch.
  • Consider using bed rails and a baby monitor for safety. Do not use restraints.
  • Limit visitors, radios, TVs, and phone ringers.
  • Share memories can be comforting. Some people talk about holidays, family gatherings, or favorite places.
Saying Goodbye:
Many people have questions about saying goodbye. Many aren't even sure if they should. Some people fear that it might speed up death.
Some people are afraid saying goodbye will be taken the wrong way. Others may want to say goodbye, but may not know what to say. Some wonder whether they should tell the person it's okay to let go. These are all normal feelings.
What to say and when to say it is a personal choice. There is no right or wrong way to do it. Some people have a difficult time saying goodbye. However, once they've done it, it can be like a weight has been lifted. This time with your loved one is special.
What can you do:
  • Take time while the person is awake to say or do what you need to. Follow your heart because this might be your last opportunity.
  • Some people start with;
    • "What I love most about you..."
    • "What I will always remember..."
    • "What I will miss most about you..."
    • "What I learned from you..."
    • "What I hold close to my heart is..."
  • Some may take this time to say, "I am Sorry."
  • They may take the time to forgive or let go of past arguements and anger.
  • Some may use this time to give thanks.
  • It may be helpful to hold your loved one, if you can. Or take their hand and say something you need to say.
  • Tears are a noraml part of saying goodbye. Crying can be a healthy way to show how much you love the person.
When death is near:
Below is a list of possible signs that may mean death is soon. Each person's dying process is unique.  People may show some or all of these signs at different times. Keep in mind, this is only a basic guide. We will always be there and "We'll walk with you along the way..."
1 to 3 Months
  • Sleeping MoreWithdrawal from people and activities
  • Eating and drinking less
  • Talking less
1 to 2 Weeks
  • Use of Symbolic language ("I want to go home")
  • Confusion about place, time, and people
  • Talking to others who are not in the room
  • Physical Changes:
    • Skin color changes
    • Heartbeat speeds up or slows down
    • Blood pressure goes down
    • Body temperature goes hot or cold
    • Breathing is weak or uneven
    • Eating and drinking less or not at all
Days to Hours
  • Wave of energy
  • Sleeping most of the time
  • More changes in skin color
  • Being restless
  • Have a hard time swallowing
  • Rattling breath sounds
  • More changes in breathing (long breaks betwen breaths)
  • Drop in blood pressure
  • Weal heartbeat
  • Eyelids don't close all the way
Minutes
  • Glazed eyes (staring into the distance)
  • Mouth open
  • Short breaths with longer breaks between
  • Does not respond
Moment of Death
Although it might be difficult, it's important to plan out what to do at the time of death. Talk with family members, caregivers, and friends who might be there. No one can really tell when death will take place. Some people die when others are there. Some take their last breaths when they are alone.
When the person dies, there will be no breathing or heartbeat. There will be no response to your voice or touch. The eyes may be partly open. The pupils won't react to light. The jaw will relax and the mouth open. There may be loss of bowel and bladder control as well.
Death can feel like a shock even if you felt prepared for it. When the person dies, nothing else needs to be done right away other than calling the hospice. There is no need to call 911 or the police. You may want to call a good friend or family member to be with you at this time.
What can you do:
  • Please contact the hospice. A nurse will come immediately. Other team members will come as needed.
  • When the nurse and other team member come (most likely the chaplain will accompany), they will;
    • Confirm the death.
    • Remove any tubes and other medical equipment that are connected to the patient.
    • Offer to bathe and prepare the body.
    • Dispose of the medication (you must be present). We prefer to return unused medication to the pharmacy with your (POA) consent.
    • Provide support to the family, friends, and caregivers.
    • Call the funeral home, if you wish.
    • Coordinate with the coroner, if you wish.
    • Make plans to have equipment taken away.
  • People honor the passing of their loved ones in different ways. Some want the funeral home to come right away. Others wait before calling.
  • Some people honor loved ones by;
    • Telling stories
    • Dressing the body in special clothes
    • Putting flowers in the room
    • Lighting a candle
    • Sharing a ritual from the person's spiritual beliefs
    • Bathing the body
    • Playing special music
    • Saying a prayer
  • Let the funeral home know when you are ready for them to come. You can choose to be there when they remove the body or you may be in another part of the home. The funeral home will then help you make plans for services. Whatever you decided to do, we will be there and "We'll walk with you along the way..."
Care for the Caregiver:
Caring for someone who is at the end of life can be physically, emotionally, and spiritually draining. It may feel like too much at times. It can leave you tired in the mind, body, and spirit.
You might also be juggling other responsibilities like work, caring for a home with other loved ones, or taking care of your own health needs. Balancing another's care with your own needs can be really difficult. Be sure to seek that balance. It's important that you take care of yourself too.
What can you do:
  • Go outside for a few minutes. Smell and feel the fresh air. Take a walk or sit in a peaceful area.
  • Take a deep breath many times a day. Deep breathing can refresh both the body and mind.
  • Drink plenty of liquids, especially water.
  • Try to stick to an exercise routine, if you have one. This can help lessen stress and boost energy.
  • Lie down for 20 minutes or sit in a chair with your feet up.
  • Decide if calls or visits are helpful or not. Limit visits as a way of honoring your own needs. Give yourself time alone as needed.
  • Follow a well-balanced diet. Eat at regular times.
  • Ask for help. Often family and friends want to help, but do not know how. Keep a list of tasks to be done, such as shopping or walking the dog.
  • Ask for help from the hospice;
    • Need a few hours break or sleep, we will arrange for a volunteer to sit with the patient for a few hours.
    • Have a few errands that need to be done, the volunteer can do them for you.
    • Need a full night's rest, we will arrange for the patient to go to a respite for the night.
  • Share your feelings with a trusted friend, your spiritual counselor, or someone from your hospice team.
"We'll walk with you along the way..."