Is your loved one experiencing terminal agitation in the last days of life? (Terminal Agitation) - Let's be aware of this

Is your loved one, perhaps a parent, grandparent, or relative, nearing the end of their life? During that time, have you noticed that they suddenly become very restless and agitated? Perhaps they are thrashing around in bed, pulling on the sheets, or screaming in a way you have never seen before. It is normal to feel very sad, scared, and shocked when you see something like this. But remember, this behavior is not something they are doing out of anger toward you. It is just an outward manifestation of some changes going on inside their body.

Simply put, what is Terminal Agitation?

Terminal Agitation, sometimes called Terminal Restlessness or Terminal Delirium, is a term used to describe a pattern of restless, confused, and agitated behavior that can occur in the days before a person dies. This condition can occur as the body's organs gradually shut down, or "shut down," and can be caused by effects on the brain.

Seeing this may make you feel like you're missing out on a peaceful farewell to your loved one. It's a very painful feeling. But the most important thing is to understand that this is a medical condition that is beyond the patient's control. Your doctor or palliative care nurse can help manage this anxiety and make your loved one as comfortable as possible.

What are the symptoms that can be seen in this situation?

These symptoms can appear suddenly and severely, and sometimes come and go. These behaviors can come and go throughout the last few days of life. Let's look at what the main symptoms are.

How long will this unrest last?

This condition usually begins about two weeks before death. However, this varies from person to person. This restlessness may occur along with other end-of-life symptoms, such as mottled skin, loss of appetite, and low blood pressure. As death approaches, these signs of restlessness gradually diminish, and the patient may become still and unresponsive in the final days or hours. Your doctor or care team can best explain this to you.

What causes this?

The main reason is the physical changes that occur in the body during the dying process. Imagine, when the functioning of major organs such as the kidneys and liver stops, waste products accumulate in the body and cause chemical imbalances. This directly affects the functioning of the brain, causing confusion and restlessness. Also, when the heart and lungs weaken, the body's oxygen levels decrease. The decrease in oxygen reaching the brain is also a reason for this confusion, a state of talking to people who are not there.

In addition to this main reason, other factors can also increase this anxiety.

• Bowel and urinary problems: The patient may not feel the need to defecate or urinate. This can lead to constipation or urinary retention. These discomforts increase anxiety.
• Brain tumors or swelling: These can also cause confusion and restlessness.
• Cancer treatment:This condition can also occur as a side effect of chemotherapy treatments given to cancer patients at the end of their lives.
• Other medical conditions: Conditions like infections, fever, and dehydration can affect the brain and make this restlessness worse.
• Emotional changes: A person facing the end of life may experience many feelings, such as fear, anxiety, and guilt. These emotional pressures can also cause anxiety.
• Painkillers: Some strong painkillers given during end-of-life care, for example opioids, can sometimes increase confusion.
• Uncontrolled pain: If the pain is not properly controlled, the patient may become restless due to the discomfort. If you feel that your loved one is in too much pain, tell your doctor immediately.

How to manage this situation?

Our goal here is not to 'cure', but to 'manage' and make the patient as comfortable as possible.

Medical management:

• Changing or adjusting the dosage of current medications.
• Treating another underlying medical condition (e.g., an infection) that is causing the restlessness.
• Administering sedatives or anti-psychotic medications to calm the patient.

Things you can do:

Sometimes, all the patient needs may be your affection and comforting touch.

• Hold their hand.
• Apply oil or lotion to your legs and feet and massage them regularly.
• Put on some calm, sweet music.
• Read a book to them.
• Help them change their posture.
• Speak in a very calm, soft voice.

What you can do to care for your loved one

There are several ways you can help them physically and emotionally during this difficult time.

• Acknowledge their discomfort: Say something like, "I understand that you're feeling very uncomfortable." If you can talk to them, ask them about how they're feeling.
• Stay with them: Maybe they want to be quiet. Maybe they have something to talk about. Just being there is a big boost for them.
• Create a safe, comfortable environment: Place their favorite pictures and mementos near the bed. Play soothing music. If they are too hot, wipe them with a damp cloth. If they are cold, wrap them up warmly.
• Use extra pillows: Changing positions frequently can help prevent bedsores and increase comfort.
• Provide spiritual comfort: Many people find comfort in religious things at the end of their lives. Include Pirith, hymns, etc. according to their beliefs. Ask if they would like to meet with a religious leader.
• Keep talking: Even if they are unconscious or unresponsive, they may still be able to hear you. Keep talking. Saying things like, "We're here for you," or "It's okay if you're ready to go," can help them feel reassured.

How do you take care of yourself?

Seeing a loved one suffer like this, crying in pain, is so hard to bear. It's normal to feel scared, sad, guilty, and overwhelmed. It's important to take care of yourself during this time.

• Consider counseling: Seek the help of a professional counselor to help you deal with these complex emotions.
• Take a break: Go outside for a while. Take a walk in the garden. Do something to clear your mind.
• Join support groups: Talking to people who have had similar experiences can help you feel like you're not alone.
• Ask friends and family for help: Ask someone else to stay with the patient while you take a break.
• You don't have to carry this burden alone. Ask your hosting team for help. If you need a break, tell them. They will inform you of any necessary changes.