Caring for a loved one on hospice can be a challenging and rewarding experience. However, it can also be overwhelming and stressful at times. That is why it is important to keep a journal of the care you provide, as well as the events that happen during your time with the patient. In this article, I will explain how can benefit both the patient and the family, as well as the hospice provider. I will also give some tips on how to start and maintain a journal of care.

Benefits of caregiver journaling

can have many benefits for the patient and the family, such as:

  • Improving communication. By writing down the details of the care you provide, you can share them with other family members, friends, or health professionals who are involved in the patient's care. This can help them understand the patient's condition, needs, and preferences better, and avoid any confusion or misunderstanding.
  • Enhancing memory. By recording the events that happen during your time with the patient, you can preserve the memories of your loved one and the moments you shared. You can also use the journal as a reference to recall essential information, such as medication doses, symptoms, or appointments.
  • Reducing stress. By expressing your thoughts and feelings in the journal, you can release some of the emotional burden that comes with caregiving. You can also use the journal as a way to cope with the challenges and difficulties you face, and to reflect on the positive aspects and rewards of caregiving.
  • Supporting decision-making. By documenting the patient's progress and decline, you can have a clearer picture of the patient's and quality of life. This can help you and the patient make informed decisions about the , such as whether to continue or discontinue , or whether to pursue any additional treatments or interventions.

Caregiver journaling can also benefit the hospice provider, such as:

  • Ensuring eligibility. 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 is taking longer than six months. Your keeping a journal of care can assist the hospice provider to verify the patient's eligibility and to justify the continuation of if needed.
  • Providing feedback. By sharing your journal of care with the hospice provider, you can give them valuable feedback on the quality and effectiveness of the care they provide. You can also let them know about any concerns, questions, or suggestions you have regarding the patient's care. This can help the hospice provider to improve their service and to address any issues or problems that may arise.

Tips for caregiver journaling

If you are interested in starting a journal of care, here are some tips to help you:

  • Choose a format. You can use any format that suits your preference and convenience, such as a paper notebook, a digital document, or an online app. I do recommend using a wide ruled composition journal like the ones you may have used in high school or college, as they are easy to write on and to store.
  • Write regularly. You can write in your journal as often as you like but try to make it a habit to write at least once a day, or after each caregiving session. This can help you keep track of the changes and developments in the patient's condition and care, as well as your own thoughts and feelings.
  • Write clearly. You can write in your journal in any style or tone that you prefer, but try to make it clear and concise, so that you and others can understand it easily. You can also use bullet points, headings, or symbols to organize your journal and to highlight the key points.
  • Write honestly. You can write in your journal whatever you want, but try to be honest and truthful, both about the patient and yourself. You can also write about the negative or difficult aspects of caregiving, as well as the positive or rewarding ones. You do not have to censor or edit your journal, as it is meant to be a personal and private record of your experience.
  • Write respectfully. You can write in your journal with respect and , both for the patient and yourself. You can also write with respect for the hospice provider and other health professionals who are involved in the patient's care. You do not have to agree or approve of everything they do or say, but you can acknowledge their role and contribution to the patient's care.

Conclusion

Caregiver journaling is a simple and effective way to enhance the care you provide for a loved one on hospice, as well as the care you receive from the hospice provider. It can also help you cope with the emotional and practical aspects of caregiving, and to create and preserve the memories of your loved one. I hope this article has inspired you to start or continue a journal of care, and to enjoy the benefits it can bring to you, the patient, and the family.

Resources:

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

Educating families on reporting changes of condition

Understanding Hospice Benefit Periods

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

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