For Family Caregivers: What to Expect When Someone Is Dying

Hospice care serves to help patients and their loved ones understand the dying process. Members of the hospice interdisciplinary team serve as guides for an individual’s end of life journey. Here are some things you, as a family caregiver, can expect from and offer to your loved one during his/her dying process. Your hospice team can offer you further insights and suggestions.

Final Months to Weeks

We encourage caregivers to practice acceptance of the patient’s withdrawal, including a declining appetite and thirst. 

Know that a loving presence is the greatest gift you can offer to your loved one. 

Please remember to take care of yourself. Do not hesitate to accept respite from others, such as caregivers, volunteers, and friends. 

Honor your loved one’s spiritual experiences and beliefs. Discuss any supports or practices that the patient may find comforting.

From Weeks to Days

The dying process can be a very spiritual and otherworldly event for the dying person. She/he may see, hear, and speak to those who have died before, re-live other times, see things we cannot, and pick at the air or bedclothes. They may also speak symbolically, using wording about needing to pack, taking a trip, or boarding a train. It is more helpful for you to meet them at this spiritual level and use their language to gain understanding, to comfort, and to affirm their needs.

We believe hearing is the last sense to leave us. Maintain a calm environment and presence for your loved one, and speak in a quiet and natural way to him/her. Explain when you are going to do something, and reassure your loved one if he/she is frightened.

From Days to Hours

Now is the time for you to focus your attention on caring for your loved one’s spirit. We encourage you to continue providing care for the body, but to be aware of your loved one’s inner needs. 

Say what you need to say to your loved one. Be open to tears and your feelings. Choose what is right for you and your loved one. You might consider saying any of the following. I love you. I will miss you. It’s okay for you to go; we will be alright. Please forgive me. I forgive you. Thank you. 

Know that death will come in its own time. Some individuals may wait to see or speak to a specific person. Other people choose a moment to die when they are alone. Still other individuals will die surrounded by loving faces.

Moment of Death

Take your time to say goodbye. 

Call the hospice to let them know the patient has died. A nurse will come out to pronounce, and will assist with death arrangements. 

If you have questions about how hospice can help you during the end-of-life process, contact your local hospice provider. To find a provider, visit the National Hospice & Palliative Care Organizationwebsite.

Information adapted from Casa de la Luz Hospice Safe Passages booklet

Carrie Bui, Communications Specialist