Changes naturally occur in the body as one draws nearer to the end of life. Although each person’s experience is unique, there are common signs that death is near.
Terminal restlessness is a type of confusion or agitation that can occur at the end of life. A person may be described as restless if they are unable to rest, concentrate or focus. As restlessness becomes worse, it can turn into agitation.
It’s common for an individual at end of life to experience restlessness, especially in the final stages of the dying process. This can be distressing to the patient and caregiver/family because the person may be acting out in a way that is not reflective of their feelings about their family/caregivers. It may be difficult not to take things personally when witnessing restlessness. Try not to take things personally or feel guilty.
The most important thing it is to try to make the person as comfortable as possible.
What causes terminal restlessness?
- Emotional response to the dying process. At end of life, people are often aware they are dying and may experience fear, anger, uncertainty and restlessness.
- Medications. Some medications can cause unwanted side effects, which can include restlessness, drowsiness, mood changes, anxiety, nausea, vomiting and gastrointestinal upset.
- Organ failure/medical problems. Decreased oxygen levels, electrolyte imbalances and metabolic changes because of bodily system failures and medical problems can contribute to delirium and restlessness.
- Pain. Pain and discomfort can cause agitation and restlessness, especially if a person is unable to describe or voice their pain.
What does restlessness look like?
- Aggressiveness/anger/outbursts
- Pulling at tubing, clothing, bedding or other items
- Searching for items and then turning away from them
- Aimless movements and fidgeting
- Changes in alertness and lack of attention
- Difficulty sleeping or sleeplessness
- Trying to get out of bed without a known reason
- Difficulty in getting comfortable
- Muscle twitching
What can you do?
- Keep the environment calm: play soothing music, decrease visitors, read a favorite book, dim lights, brush hair, etc. Do whatever is usually relaxing for the person.
- Offer reassurance to the person who is agitated.
- Distract the person with something familiar, such as photos or a task (folding laundry, art or writing).
- If the person is able, try going for a walk, getting up to use the restroom or repositioning.
Restlessness is difficult not only for the one experiencing it, but also those around them. If you find yourself feeling overwhelmed on how to help your loved one, seek assistance. Don’t be afraid to ask for support. Asking for help allows you to be the best caregiver possible.
If you need extra support, HIA Hospice can help. Contact us at (800) 237-4629.