When someone you love is very sick and may not get better, you want to do everything you can to make them comfortable and happy. Sometimes, you may notice that they are acting differently or feeling worse. This is called a change of condition. Some are very serious and need to be reported to the hospice provider right away. Other are less urgent and can be written down in a journal until the next nursing visit. This article will help you learn how to tell the difference and what to do.

When to call the hospice provider

Some changes of condition are signs that your loved one needs immediate help. These include:

  • Being very sleepy, not responding, or not waking up
  • Having trouble breathing, breathing very fast or very slow, or saying they can't catch their breath
  • Throwing up something that looks like coffee grounds
  • Having a lot of pain that doesn't go away even after taking pain medicine
  • Feeling sick to their stomach and throwing up a lot
  • Having loose stools that don't stop even after taking medicine
  • Having food or drinks come out of their mouth when they try to eat or drink
  • Falling down a lot
  • Acting very confused, angry, or scared
  • Having any other symptoms that make you worry that something bad is happening

If you notice any of these changes, you should call the hospice provider right away. They will tell you what to do and may send someone to check on your loved one. They may also give them some extra treatment or medicine to make them feel better.

What to write in a journal

Some changes of condition are not as serious and can wait until the next nursing visit. These include:

  • Moving around a lot, not staying still, or not finding a comfortable position
  • Picking at things that are not there
  • Saying they see people who have passed away
  • Not wanting to eat much
  • Seeing or hearing things that are not real
  • Having trouble breathing, but not feeling distressed
  • Having trouble sleeping
  • Having trouble going to the bathroom
  • Having black or dark stools
  • Having trouble swallowing food, drinks, or medicine

If you notice any of these changes, you should write them down in a journal. You can use a notebook, a calendar, or a phone app to keep track of them. You should write down the date, the time, the change of condition, and what you did to help your loved one. For example, you can write: “Nov 18, 9:00 am, mom was restless and picking at her blanket, I gave her a hug and played her favorite music”. This will help the nurse know how your loved one is doing and what they need.

How to talk to the hospice team

The hospice team is there to help you and your loved one. They will visit you regularly and check on your loved one's condition. They will also teach you how to deal with some common problems that may happen, such as , breathing trouble, pain, nausea, constipation, loose stools, or noisy breathing. They will give you some medicine and equipment to use if needed.

It is important to talk to the hospice team and tell them how your loved one is doing. They will also tell you what to expect and how to prepare for the future. This will help you feel more calm and in control of the situation.


When your loved one is very sick, you may notice some changes of condition. Some of them are serious and need to be reported to the hospice provider right away. Others are less urgent and can be written down in a journal until the next nursing visit. The hospice team will help you and your loved one with these changes and provide you with support and resources. By knowing how to tell when your loved one needs help, you can make them more comfortable and happy.


The Importance of Caregiver Journaling

Pain Assessment in Hospitalized Older Adults With Dementia and Delirium

Pain Assessment in Dementia – International Association for the Study of Pain (IASP)

Pain Assessment in People with Dementia: AJN The American Journal of Nursing

PAINAD Scale Offers Alternative to Assessing Pain in the Dementia Patient – JEMS: EMS, Emergency Medical Services – Training, Paramedic, EMT News

Pain Assessment in Advanced Dementia Scale (PAINAD) – MDCalc

Uncontrolled Pain and Risk for Depression and Behavioral Symptoms in Residents With Dementia

Chronic Pain & Symptom Tracker: A 90-Day Guided Journal: Detailed Daily Pain Assessment Diary, Mood Tracker & Medication Log for Chronic Illness Management

Pain And Symptom Tracker: Daily Pain Tracking Journal Detailed Pain Assessment Diary, Medication, Supplements Food & Activities Log for Chronic Illness Management

Pain Assessment and Pharmacologic Management

Adult Nonverbal Pain Scale (NVPS) Tool for pain assessment

Assessing pain in patients with cognitive impairment in acute care

FLACC Pain Scale

Pain Assessment in Advanced Dementia Scale (PAINAD)

Pain Assessment in Non-Communicative Adult Palliative Care Patients

Pain Assessment in People with Dementia

Tools for Assessment of Pain in Nonverbal Older Adults with Dementia: A State-of-the-Science Review

Understanding the physiological effects of unrelieved pain

Untreated Pain, Narcotics Regulation, and Global Health Ideologies

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side , A Guide for Caring for the Dying at Home

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