Caring for someone who is seriously ill or dying is one of the hardest things a person can do, and one of the most meaningful. If you are that person, this page is for you.
Whether you are a spouse, a daughter or son, a friend, a nurse, a hospice volunteer or a doula, you are carrying more than most people can see. You are allowed to be tired. You are allowed to grieve. And you deserve care too.
Elisabeth began with the caregivers
Dr. Elisabeth Kübler-Ross's work started in 1965 with a seminar at the University of Chicago where doctors, nurses, chaplains and students sat with dying patients and learned from them. Her goal was never only to understand the dying. It was to help the people caring for them to stop turning away, to listen, and to be present.
On Death and Dying (1969) includes a full chapter on the patient's family. She showed that families go through the same responses as the patient (denial, anger, bargaining, depression, acceptance, and hope), often at a different pace. A caregiver may still be in denial when the patient has reached acceptance, or ready to let go when the patient is still fighting. Neither one is wrong.
Grieving before the loss
Caregivers often begin to grieve long before a death: for the person as they used to be, for plans that will not happen, for the life they shared. Elisabeth's 1969 chart names preparatory grief, grieving in advance for the losses still to come. It is not a betrayal or giving up. It is love, looking ahead.
When the death comes, caregivers may feel sorrow and relief at the same time, and then guilt for feeling relief. Many also grieve the loss of the caregiving role itself: the routines, the purpose, the closeness of those last months. All of this is normal.
The whole caregiver
Elisabeth taught that every person has four quadrants: physical, emotional, intellectual and spiritual. That is true of caregivers as much as patients.
Physical
Sleep, food, movement, your own medical appointments. Your body is carrying this too.
Emotional
Somewhere to put the sadness, fear, anger and guilt, instead of holding it all in for the sake of the person you care for.
Intellectual
Clear information about the illness, the care, and what to expect, so you are not facing the unknown alone.
Spiritual
Meaning, faith, nature, quiet, whatever restores you. The questions a dying person asks often become the caregiver's questions too.
Your own unfinished business
Caring for someone at the end of life can stir up old losses, old family patterns, and things never said. Elisabeth called this "unfinished business." Her Life, Death and Transition workshops drew nurses, hospice workers and family caregivers alongside grieving people, because those who care for the dying carry grief of their own. Tending to it is not selfish. It is what allows you to keep caring without breaking.
Signs you need more support
- exhaustion that sleep does not fix
- feeling numb, irritable, or unable to feel anything for the person you care for
- withdrawing from friends, family, and things you used to enjoy
- getting sick more often, or neglecting your own health
- relying on alcohol, medication, or other substances to cope
- thoughts of hurting yourself, or of not wanting to go on
These are not signs of failure. They are signs that you have been giving more than one person can give. Please reach out to your doctor, a counselor, a caregiver support group, or your hospice team. If you are in crisis, the numbers on our If You Are Grieving page can help right now.
Small things that help
- Say yes to help. When someone offers, give them a specific task: a meal, an errand, an afternoon at the bedside.
- Take real breaks. Ask about respite care through your hospice or local services. Rest is part of caregiving, not a break from it.
- Talk to someone who understands. Another caregiver, a support group, a chaplain, a counselor.
- Say what needs saying. Elisabeth encouraged families to finish their business while there is time: thank you, I'm sorry, I forgive you, I love you, goodbye.
- Let hope change shape. Hope for a cure may become hope for comfort, for peace, for a good goodbye. Read more about hope.
- After the death, give yourself time. Caregivers often keep going on adrenaline and grieve later. That is normal.
For professional caregivers
Nurses, physicians, chaplains, social workers, hospice staff, volunteers and end-of-life doulas grieve too, often patient after patient, with little time or permission to stop. Elisabeth asked professionals to care for themselves as seriously as they care for others: to talk about the patients they lose, to mark those losses in some way, and to face their own feelings about death rather than hiding behind their role. The Foundation's courses and live sessions are open to professionals looking for that support and that language.
From our own family
Ken Ross, the Foundation's founder and president, was Elisabeth's primary caregiver for the last nine years of her life. Caring for caregivers is not an abstract idea for us. It is part of our own story.
Where to go next
Join a free live session — Death Cafés, author talks and community conversations, open to caregivers and professionals.
Watch our caregiving talks — including hospice nurse Barbara Karnes on caregiving, dying, and what families need to know.
Learn at your own pace — online courses built from Elisabeth's books, recordings and workshops.
Family Caregiver Alliance (US) and Carers UK — practical information and support for family caregivers.