The importance of caregiver journaling for the patient and family


Wide ruled composition journal

If you are the primary caregiver for a loved one on hospice, I would love to encourage you to start journaling the care you provide including medications given and events that happen during the time you are spending with the patient.

If your patient is receiving hospice in the United States of America, Medicare governs if the patient is eligible for hospice benefits as well as how long the patient can remain on hospice if the terminal prognosis is taking longer than six months. Your keeping a journal of care can assist the hospice provider to help the patient receive the absolute best care as a team effort and to have an improved chance the patient will remain on hospice should the patient live longer than six months from the date of admission to hospice.

I do recommend using a wide ruled composition journal like the ones you may have used in high school or college. Here are things to consider documenting during your care:

  • Date and time (it’s ok to be to the nearest 15-minute, and if your day is extremely hectic then try to be to the nearest hour of the event).
  • The event — falls, fainting, if there were injury from either, nausea with or without vomiting (and if the vomit looked like coffee grounds), loose stools or any stools that are black and tarry, coughing fits and mucus/sputum color if any, restlessness, agitation, combative behaviors, fidgeting, picking at things not present, seeing people or other things not present, delusions — check with your hospice provider for any specifics they may need based on why hospice is involved in the care.
  • Medications given especially if they are related to pain, nausea with or without vomiting, shortness of breath, anxiety, restlessness, and other comfort meds.
  • Any other details and even questions that you want to ask the hospice team when they visit.

My families that keep such a journal report feeling better about the care they are providing and the care their loved one is receiving. As a visiting hospice RN case manager, I know I appreciate such journaling as there are times a patient’s decline is heading towards death, but taking longer than the doctors involved anticipated and this helps me to help the patient remain on service to receive the care they need and the family often appreciates.




Peter M. Abraham, BSN, RN

RN experience: cardiology, long-term care, rehab, rural home hospice