How to Be a Good Caregiver to a Hospice Patient

There is No Such Thing as

"A Perfect Caregiver"

The Caregiver

The Caregiver's Responsibilities

The caregiver for a hospice patient is the person who provides the additional care for the hospice patient outside the care of the hospice nurses, health aides, doctors, therapists, and volunteers,

The caregiver may be:

  • a family member.  A spouse, child, sibling, or parent.
  • a close friend.
  • a hired caregiver.  There are many agencies that have specifically trained nurses and aides that are available to be with the patient for periods of time, from a few hours to around the clock. 

Every situation is different because every patient and family is different.  However, similarities do exist, and it will be helpful to learn about other families and how they have coped with caring for a dying loved one. 

The caregiver is an integral part of the hospice care team.  The caregiver is the person or persons who sees the patient daily, and provides the personal care that is needed by the patient.

The care giving duties should not rest solely with one person.  The duties can be very intensive if the patient requires maximum assistance. 

Some physical care the caregiver may be responsible for:

  • Preparing food
  • Feeding the patient
  • Bathing the patient
  • Changing clothing and bedlinens
  • Providing incontinence care (i.e. changing diapers, cleaning catheters, changing underpads)
  • Administering medications

Some emotional care the caregiver may be responsible for:

  • life review, involving talking to the patient about memories
  • contacting other family members for visits
  • crying, laughing, and sitting quietly with the patient for hours if needed
  • reading 
  • watching movies
  • praying

It is impossible to provide strict guidelines for how a non-hired caregiver is to act beyond being a compassionate and loving person who is there for the patient.  

Caregiver Resources

It is a challenge to take care of a person, especially if this person is a close family member or friend, and especially if this person is dying.  Death is a human experience that everyone must face at one time or another, but that does not mean that everyone is well-equipped to "deal with it".  It takes a great deal of physical stamina, mental fortitude, and emotional forgiveness to be the caregiver for a dying family member.  

Just because you are a person's caregiver does not mean you are automatically endowed with nerves of steel and a perfect intuition for what the patient needs.  Every change in patient condition results in a change in the caregiver's situation, and this requires a large amount of flexibility, forgiveness, humility, and compassion on either side of the patient/caregiver equation. 

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  • Be Honest. It is essential to be realistic with yourself and the patient about what care you can reasonably provide,  Maybe the you have a job that does not provide adequate time to be by the patient's side all day, or maybe you have ailments or impediments yourself.  In a hospice situation, it is important to remember that you, the caregiver, are also going through a major upheaval your own life.  Your loved one is dying and you are watching it happen.  Some people are very comfortable being the day-in, day-out person, while others are not ready or available for this kind of care.  
  • Ask for and accept help.  It can be a source of pride for a caregiver to "be that person" for their loved one. Don't unnecessarily push away honest offers for help, whether it be to provide  for you and/or the patient a meal, laundry care, or to simply allow you to take a quick break to care for yourself, or to even split caregiving duties with another person, be it a family member, friend, or a hired nurse or aide.
  • Take care of yourself.  You will always be a better caregiver if you, the caregiver, have your immediate needs cared for.
    • Remember to eat. Small meals throughout the day will keep your strength up to help your loved one.
    • Take your medications.  If you are sick, you won't be able to care for your loved one well.
    • Shower or bathe regularly.  Feeling and smelling well will recharge you.
    • Take short breaks throughout your duties to clear your mind. A ten minute walk, a five minute cry, fifteen minutes to read a favorite magazine are all healthy ways to release stress.
  • Educate yourself.  Terminal diagnoses can be complicated and may be frightening.  Learning more about the disease process can ease your mind, and may provide you with ideas of how to care for your loved one.  The decline and death of a person are not usual occurences in day to day life; it is important to read and talk about what to expect so you are prepared.
  • Ask questions./Don't assume.  Ask your loved one what they want or need.  Ask the family what they want or need. Sometimes, asking a simple question is enough to ease the minds of all involved.  Also, ask your hospice care provider about anything you don't understand or need clarified, like how to provide incontinence care, or if other medications are available to help your loved one, or for what signs and symptoms you should be aware.