Living with Disorders of Consciousness

Transitioning after the hospital

Returning home with a person with a disorder of consciousness can feel overwhelming.

Know that your medical and rehabilitation team will help you prepare for a successful transition. They will provide you with specific instructions based on your needs and the needs of your loved one.

It can be difficult to prepare for the full magnitude of the life changes the person’s injury has created and may lead to in the future. Learning how to best manage your daily activities and care will help get you through these initial challenges while also providing you with the tools to advocate for yourself and the injured person for the long term.

An especially challenging stage in the recovery process following a severe brain injury occurs after discharge from the acute care setting and before the person is ready for comprehensive rehabilitation. If the person’s status has not improved to a point of emerging from minimally conscious state, you have several options. You may decide to:

  • Care for the person at home, possibly with the assistance of home healthcare.
  • Have the person cared for in an extended care facility, a transitional medical facility, a long-term acute care facility, a skilled nursing facility, or an intermediate care facility.

Your case manager, along with other members of the treatment team, should help you determine your options and help you in making your choice.

You are a very important member of the treatment team, and they will welcome your ideas and input.

  • Talk daily to the nursing staff, therapy staff, and case manager if you have questions. They are all your advocates and will provide you with information so that you can be more involved with the patient’s treatment planning.
  • Help them know more about the person. Tell them about their personality and activities they enjoyed.
  • Tell them about your rehabilitation goals and what you hope to learn. Be open to learning about the patient’s care and learning how to become a caregiver for them.
  • Be present as much as your schedule will allow.

Here we share examples of at-home activities you can participate in with the injured person to address the goals of arousal and sensory stimulation. Be alert for signs of fatigue.

Arousal activities

  • Sensory stimulation
    • Noise such as television, recorded books, music, and musical instruments
    • Smells such as oils, plants, and lotions
    • Tactile sources such as plants, sand, and sensory toys
  • Pet therapy
  • Changes in environment.

Fatigue

A nearly universal complaint that people have with head injury is fatigue. Although fatigue decreases over time, it is a very persistent problem. Some signs of fatigue can be changes to blood pressure or heart rate, sweating, posturing, and pressured breathing.

Physical fatigue refers to doing some sort of physical exertion. Our strength and endurance decreases after a brain injury. What tends to surprise people with a head injury is the mental fatigue, when the brain seems to be a like a car that’s run out of gasoline. If you become physically ill with a cold, or have surgery, this fatigue disorder briefly increases for a short time.

Source: Traumatic Brain Injury Survival Guide

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