Terminal Restlessness Is Part of the Way We Die.

Terminal restlessness is a medical term for agitation as end of life approaches. It usually begins one to three weeks before death from disease or old age.

The restlessness shows itself by random body movements, hands picking the air or clothing, mumbling, talking but not making sense, by just not being settled and quiet. The person is now beyond expressing with words. There are few if any rational conversations.

This restlessness can be a lack of oxygen to the brain but more likely it is just part of the natural way we die.

We are all going to be afraid to some degree as we approach death. This is normal and natural. Also we know when we are dying. It is no secret. We live inside of our bodies--we know. 

In the months before death from disease we don’t believe we can’t be fixed but there comes a point where we indeed know the time is near (one or three weeks before we actually die from disease is about that timetable). Can the restlessness being experienced be an expression of fear? Maybe?

Realizing in the core of our being that we are going to die we become frightened and that fear shows itself in agitation. “If I lay down and close my eyes I may die” so we don’t lay still, we move about.

Most of the time this restlessness, this agitation is not destructive. It is not severe. If the movements become thrashing about or hurtful and become a danger to the person and/or others then a medication to calm is needed. That medication is not necessarily a narcotic. There are other drugs more effective for terminal restlessness than a narcotic. Most people, however, do not need medications for sedation or calming.

Again this activity is normal and natural. It is a part of the dying process from disease or old age. Nothing bad or unusual is happening. The restlessness is just a part of the way we die.

This activity is actually one of the signs we look for that says the “labor of dying” has begun. It is that normal.

Something More... about Terminal Restlessness Is Part of the Way We Die.

When the patient is a couple days to hours before death, The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death gives ideas for what to do and say as well as how to care for the person who is approaching death. Caring for someone at end of life is different than caring for someone who will get better. I have put together a bundle of the most important resources to educate patients and families after a life limiting diagnosis has been given. It is called The Family Support Bundle. It may be exactly what you need right now. 


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Mike W

Sent from Thank you again Barbara
It is comforting reading your wisdom and the books have been helpful for me to have a guide as to what to expect and be prepared for.
in the last couple of weeks my wife has eaten the equivalent of one healthy meal and barely drinks two glass of some form of liquid per day.
I am grateful with help she wants to use the bathroom and about every other day she gets up to watch TV (even though she can’t follow the program) and has decided it is too much trouble to get a house dress on to move to the TV room.
I make sure she’s comfortable and not in pain
Bless you for all your support and information
BK Books replied:
Hi Mike, I don’t have enough medical information to comment on your wife. I hope you have support in caring for her. Blessings! Barbara

Rita Morawski

Barbara,my Mother passed away,on July 10 th.
BK Books replied:
You shared that with me earlier. How are you doing? I hope you are reading my booklet My Friend, I Care. It can be a guide in your grief. My blessings are with you Barbara

Jennifer Schwarz

There seemed to be an element of anxiety and discomfort wrapped up with the terminal restlessness in the last few days. Since my mother was a Hospice patient, we had Ativan on hand. I gave my mother a very low dose of it, in addition to continuing the low dose of morphine to eliminate the pain from a hip fracture. After taking the ativan, she seemed more physically relaxed and calm. Does it make sense to treat the symptoms of terminal restlessness? She was nonverbal at the time, but, her advance directive spoke to the desire to avoid pain and suffering as much as possible. Thank you, as always for your wisdom and guidance.
BK Books replied:
Hi Jen, it sounds like you did just the right thing for your mother to be comfortable and it helped. Good for you. The goal of end of life care is comfort. If agitation is causing discomfort—treat it. There is no one size fits all in care for those dying. Care is individualized. My blessings! Barbara

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