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.
8 comments
Tori
Hi Barbara,
I wanted to thank you for your devotion to end of life care. When I was a hospice nurse, your information gave me so much of what I needed to ensure my patient and family a peaceful passing. I cannot thank you enough. Now that I have moved on to oncology/chemo infusion I still always have a stack of gone from my sight in my desk. I have provided my coworkers with a copy as most of them have not worked with the “science” of death. It is work, much like being born. There is a process and a timeline. You taught me that. I keep the booklet in case someone is transitioning from treatment to hospice; often the family has said how helpful it was. I see my chosen profession as my ministry. A possibility of helping people no matter their place in life. You are a God send to many nurses like me. Bless you. Tori
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BK Books replied:
Hi Tory, what a perfect use of my materials—- when treatment stops, even before it stops my booklet ,*A Time To LIve, *can be helpful. Blessings! Barbara
Hi Barbara,
I wanted to thank you for your devotion to end of life care. When I was a hospice nurse, your information gave me so much of what I needed to ensure my patient and family a peaceful passing. I cannot thank you enough. Now that I have moved on to oncology/chemo infusion I still always have a stack of gone from my sight in my desk. I have provided my coworkers with a copy as most of them have not worked with the “science” of death. It is work, much like being born. There is a process and a timeline. You taught me that. I keep the booklet in case someone is transitioning from treatment to hospice; often the family has said how helpful it was. I see my chosen profession as my ministry. A possibility of helping people no matter their place in life. You are a God send to many nurses like me. Bless you. Tori
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BK Books replied:
Hi Tory, what a perfect use of my materials—- when treatment stops, even before it stops my booklet ,*A Time To LIve, *can be helpful. Blessings! Barbara
Deborah Roberts
As a long time vigil volunteer and advocate for end of life spiritual care, I believe terminal agitation can be addressed with love, co-meditation, gentle touch including energy work, and verbalized prayer from the person’s longest-held faith tradition. Peace exists in the core of each person; leading them past autonomic physiological and psychological agitation is a blessing…call in a skilled chaplain, energy practioner, death doula…do what you can to facilitate sacred dying…not simply a medical event.
Blessings to all on this journey! You are not alone.
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BK Books replied:
Deborah, what you suggest may work in some situations but not all. There is no “one size fits all” in end of life care. Blessings to you in the work you are doing. Barbara
As a long time vigil volunteer and advocate for end of life spiritual care, I believe terminal agitation can be addressed with love, co-meditation, gentle touch including energy work, and verbalized prayer from the person’s longest-held faith tradition. Peace exists in the core of each person; leading them past autonomic physiological and psychological agitation is a blessing…call in a skilled chaplain, energy practioner, death doula…do what you can to facilitate sacred dying…not simply a medical event.
Blessings to all on this journey! You are not alone.
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BK Books replied:
Deborah, what you suggest may work in some situations but not all. There is no “one size fits all” in end of life care. Blessings to you in the work you are doing. Barbara
Raquel
My mother must have been the exception. During her last week, she kept expressing how she looked forward to her end. She would be greatly disappointed whenever she woke up from her sleep declaring, “I’m still here? I want to go already.”
She passed on a Monday. The weekend before, (her last weekend on this side), she mostly slept. I would sit in the bedroom with her and watch as her arms flopped around at her side. Sometimes I would hear a soft moan and I would ask her if she needed anything. I don’t know if she heard me and couldn’t respond or if maybe she couldn’t hear me at all. All I could do was stroke her face, hold her hand and speak softly to her – telling her how much we all love her but we’d be ok, she can go now and rest. That following Monday at 3:58pm, she gasped four times and was gone. She happily left this life.
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BK Books replied:
Sounds like your mother very gently left this world. Blessings! Barbara
My mother must have been the exception. During her last week, she kept expressing how she looked forward to her end. She would be greatly disappointed whenever she woke up from her sleep declaring, “I’m still here? I want to go already.”
She passed on a Monday. The weekend before, (her last weekend on this side), she mostly slept. I would sit in the bedroom with her and watch as her arms flopped around at her side. Sometimes I would hear a soft moan and I would ask her if she needed anything. I don’t know if she heard me and couldn’t respond or if maybe she couldn’t hear me at all. All I could do was stroke her face, hold her hand and speak softly to her – telling her how much we all love her but we’d be ok, she can go now and rest. That following Monday at 3:58pm, she gasped four times and was gone. She happily left this life.
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BK Books replied:
Sounds like your mother very gently left this world. Blessings! Barbara
Jean Hardy
Thank you for your wonderful information!
My husband has PCA and I have cared for him since diagnosed 5 years ago. I think his death is near…your words are helping me.
Thank you.
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BK Books replied:
Jean, blessings to you and your husband. Have you contacted a Hospice to help you and do you have my booklet, Gone From My Sight? Both will be helpful. Barbara
Thank you for your wonderful information!
My husband has PCA and I have cared for him since diagnosed 5 years ago. I think his death is near…your words are helping me.
Thank you.
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BK Books replied:
Jean, blessings to you and your husband. Have you contacted a Hospice to help you and do you have my booklet, Gone From My Sight? Both will be helpful. Barbara
Marjorie
Hi Barbara, my mother went into Terminal Agitation after she had the 2nd dose of the Covid vaccine….the day after she was a different person. Hospice was called in to help, but the many medications to calm her that was used made her more afraid…morphine was decided and it took about a week or so to end her life. She had Covid and survived with mild symptoms before she received the vaccine…thank you
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BK Books replied:
Hi Marjorie, Puzzling. Make you wonder what happened. Blessings! Barbara
Hi Barbara, my mother went into Terminal Agitation after she had the 2nd dose of the Covid vaccine….the day after she was a different person. Hospice was called in to help, but the many medications to calm her that was used made her more afraid…morphine was decided and it took about a week or so to end her life. She had Covid and survived with mild symptoms before she received the vaccine…thank you
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BK Books replied:
Hi Marjorie, Puzzling. Make you wonder what happened. Blessings! Barbara
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
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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
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
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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.
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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
Barbara,my Mother passed away,on July 10 th.
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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.
Jen
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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
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.
Jen
———
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