Published: September 8, 2025
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As a caregiver, you might expect moments of quiet, sadness, and stillness at the end of life. But sometimes what you witness instead is restlessness, confusion, anger, or fear. This experience, called terminal agitation, can be painful to watch in your loved one and difficult to understand.
It doesn’t mean you’ve done anything wrong. And it doesn’t mean your loved one is suffering without peace. Terminal agitation is a natural effect of the body and mind shutting down. We’re here to walk you through what it is, why it happens, and how you can help ease this time for both of you.
What is terminal agitation?
Terminal agitation, also known as terminal restlessness, is a condition that may affect more than half of people in their final hours or days of life, according to the National Institutes of Health. It might look like your loved one is in pain or distress. Sometimes, they may not seem like themselves at all. You may notice:
- Confusion or disorientation
- Difficulty recognizing loved ones
- Emotional distress such as fear, anxiety, or anger
- Hallucinations
- Moaning or shouting
- Mumbling or nonsensical speech
- Paranoia
- Personality changes or mood swings
- Pulling away from physical affection
- Restlessness or fidgeting, such as pulling at clothes or trying to get out of bed
- Use of strong or inappropriate language
These behaviors can be unsettling to witness, especially when you were hoping for a more peaceful goodbye. Remember, this isn’t something your loved one can control. But your presence can still be a comfort to them.
Why does terminal agitation happen?
There isn’t always a clear reason why terminal agitation happens. It may be triggered by:
- Changes in the brain
- Infection or fever
- Medication side effects
- Organ failure
- Unmanaged pain
As the body starts to shut down, some organs may stop working properly. This shift can lead to chemical imbalances or waste buildup in the body, sometimes causing distress or confusion.
Offering support through agitation
Watching your loved one in agitation can be confusing, stressful, and heartbreaking all at once. You may feel helpless, scared, or unsure of what to do. Here are some simple ways to offer support with compassion and grace.
Create a calm setting
Dim the lights, lower the noise, and remove distractions to create a peaceful space. Soft music or comforting scents, like lavender, can help soothe the senses. If your loved one is open to it, give them a gentle hand or foot massage.
Focus on their comfort
Someone with terminal agitation may have discomfort but might not be able to tell you. You can help by gently moving them into a comfortable position to prevent bedsores. Use pillows to support their head and legs. Check their temperature by touching their hands and feet.
Use gentle, reassuring words
Even if your loved one seems unaware, your voice can still bring comfort. Speak softly and use familiar phrases, like “I’m right here,” “You’re safe,” and “I love you.” Let them know you care.
Avoid physical restraint
You may want to hold your loved one down if they’re trying to get up, but this can increase their anxiety. Instead, redirect their movements with calm hands and words.
Just be there
These are your loved one’s final days. Let them guide the pace and choose what feels right for them. They may want stillness, or they might have things they want to share with you. You can reassure them that it’s OK to let go when they’re ready. Just be there in the way they need you most.
Talk to the hospice team
You don’t have to figure it all out on your own. If something doesn’t seem right, don’t hesitate to call the care team to check for pain, infections, or other causes of distress. They may be able to offer medications or therapies to help your loved one feel more at ease.
Be kind to yourself
When someone you love is nearing the end of life, you may want to focus all your energy on their comfort. But your well-being matters, too. Be kind to yourself and remember to care for your own needs along the way. You might:
- Join a support group to connect with others who understand
- Lean on friends and family for help while you take care of other tasks
- Take regular breaks to clear your mind
- Talk to a spiritual professional or bereavement specialist to process your emotions
At Traditions Health, we understand it can be hard to step away when you worry your loved one might pass while you’re gone. Let us know about your concerns. We’ll be there to offer care and keep you informed when you can’t be at their bedside.
Find peace of mind with hospice care. If you’re ready to speak with a Traditions Health representative about receiving care, complete the request care form and a representative will be in touch shortly.