Losing a loved one is an incredibly challenging experience, and witnessing changes in their behavior and well-being can be distressing. As a hospice nurse, I’ve supported many families and through this grim time. One common symptom that may arise towards the end of life is . In this article, I will explain the different types of and offer guidance on managing them. Understanding these distinctions can provide valuable insights into your loved one’s condition and help you navigate the final stages of their life with compassion and care.

Terminal Restlessness, Delirium, and Habitual Restlessness

When someone nearing their life’s end, they may exhibit restlessness. It’s important to recognize that restlessness can have different underlying causes. Let’s explore three distinct types: , delirium, and habitual restlessness.

Terminal restlessness refers to a specific type of in life’s final stages. It can manifest as increased physical activity, restlessness, irritability, or aggressive behavior. Terminal restlessness is often associated with imminent death and can be distressing for both the patient and their loved ones.

Delirium

Delirium is a state of acute confusion and mental disorientation. It can cause restlessness, , and changes in behavior. Delirium may arise due to various factors such as medications, infections, , or the body’s natural response to the dying process. Delirium is different from habitual restlessness and terminal restlessness because it is often temporary and can be reversible.

Habitual Restlessness

On the other hand, habitual restlessness is a behavioral pattern a person may have exhibited throughout life. This restlessness is not related to the dying process but is a part of their usual temperament or personality. It may manifest as fidgeting, pacing, or other restless behaviors characteristic of the individual.

Managing Restlessness

Each type of restlessness requires a unique approach to management. Here are some strategies to help alleviate and support your loved one based on the specific type of restlessness they may be experiencing:

Terminal Restlessness Management

  • Provide a calm and peaceful environment: Create a soothing atmosphere by dimming lights, playing soft music, and ensuring a comfortable temperature in the room.
  • Gentle physical touch: Offer gentle massages or hold your loved one’s hand to provide comfort and reassurance.
  • Promote relaxation: Use relaxation techniques such as deep breathing exercises or guided imagery to help ease restlessness.
  • Medication adjustments: Consult with the hospice team about potential medication adjustments or additional medications to help alleviate restlessness if needed. Often times hospice providers, as part of the comfort medications, will have prescribed liquid lorazepam and liquid morphine to help manage restlessness; some providers will also add in haloperidol (Haldol).

Delirium Management

  • Identify and address underlying causes: Work closely with the healthcare team to identify and address any underlying factors contributing to delirium, such as infections, medication , or .
  • Maintain a calm environment: Reduce noise, minimize environmental triggers, and provide reassurance and comfort through your presence.
  • Ensure hydration and nutrition: Offer small sips of water or ice chips to keep your loved one hydrated. Discuss with the healthcare team if additional nutritional support is necessary.
  • Medication management: Follow the guidance of the healthcare team regarding medications to manage delirium. Medications such as haloperidol may be prescribed to help alleviate symptoms.

Habitual Restlessness Management

  • Respect personal space: Allow your loved one to engage in their habitual restless behaviors as long as they are not causing harm or .
  • Distraction and redirection: Provide engaging activities or redirect their focus to more calming tasks such as listening to music or reading.
  • Encourage regular physical activity: Light exercise or movement can help positively channel restless energy.

Understanding the Significance of Terminal Restlessness

Terminal restlessness can often indicate that a person is nearing the end of their life. While it’s essential to remember that each individual’s journey is unique, terminal restlessness may suggest that the dying process is progressing. Recognizing this symptom can help you prepare emotionally and make any necessary arrangements for the final stages of your loved one’s life.

It’s important to note that not everyone will experience terminal restlessness, and its absence does not necessarily mean the end is not near. Each person’s dying experience is deeply personal and can vary. Hospice professionals are trained to provide guidance and support during this time, so do not hesitate to contact them for assistance.

Conclusion

Managing terminal restlessness requires a nuanced understanding of its various forms—terminal restlessness, delirium, and habitual restlessness. By recognizing the distinctions among these types, and family members can tailor their approach to provide the most effective support during the challenging final stages of a loved one’s life.

Terminal restlessness, characterized by heightened physical activity, irritability, and even aggression, often signals the proximity of death. Creating a calm environment, offering gentle physical touch, promoting relaxation, and considering medication adjustments with guidance from the hospice team are key strategies for managing this type of restlessness.

Delirium, a state of acute confusion, may arise from diverse factors such as medications, infections, or dehydration. Unlike terminal restlessness, delirium is often reversible. Managing delirium involves identifying and addressing underlying causes, maintaining a calm environment, ensuring hydration and nutrition, and following healthcare team guidance on medication.

Habitual restlessness is a lifelong behavioral pattern unrelated to dying. Respecting personal space, providing distraction and redirection, and encouraging regular physical activity are effective ways to manage it.

Understanding the significance of terminal restlessness is crucial, as it can indicate the progression of the dying process. However, it’s essential to recognize that each individual’s journey is unique, and the absence of terminal restlessness does not necessarily mean the end is not near. Hospice professionals are valuable resources, offering guidance and support during this emotionally charged time. Not everyone will experience terminal restlessness, and hospice teams are equipped to assist in diverse end-of-life scenarios. Reach out to them without hesitation for assistance during this profound and personal experience.

Resources

Delirium vs terminal restlessness

Clues for terminal restlessness often missed for facility patients

Terminal restlessness in the completely nonverbal patient

Tips for new nurse — Terminal Restlessness

Management of Common Symptoms in Terminally Ill Patients: Part II. Constipation, Delirium and Dyspnea

Understanding and Recognizing Terminal Restlessness

Delirium – Symptoms and causes

Delirium in Older Persons: Evaluation and Management

Terminal Restlessness Fact Sheet

The Importance of Caregiver Journaling

Reporting Changes in Condition to Hospice

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

CaringInfo – Caregiver support and much more!

Surviving Caregiving with Dignity, Love, and Kindness

Caregivers.com | Simplifying the Search for In-Home Care

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Compassionate Caregiving series

My Aging Parent Needs Help!: 7-Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver’s Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It’s Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout, And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I’ve Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

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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