Discussion Forums

Trying to deal with terminal restlessness & agitation  
Started by Jopatte58
11 Jun 2019, 9:18 AM

My hustband has been in hospice 10 weeks today.  He was diganosed with Pancreatic neuroendocrine tumors in July 2015 - had a whipple in Jan 2016 spread to his liver - had an embolization of the tumours in Dec 2018 where a liver abscess resulted and has never left.  Ihad him at home until he fell and hit is head and then I knew we had to get him into hospice as I could not cope any longer with this care.

I knew the hospice from my dad's passing last July 2018 so was well known for me and they continue to amaze me with their care.  We cannot seem to get control of the terminal restlessness and agitation that has been going on for so long - he has been on a pain pump with hydromophone since Dec 2018, using versa for short fix and nosanam evry 4 hours.  Nothing seems to help he is so weak but thinks he is still working fixing things - last night was the worst with is angry outbursts and acting like he was going to hit me.  The nurse and PSW as always were so great - I finally left as there was no hope in sight.

How long can this go on for? - he is so boney and thin - I just wanted him to be calm and peaceful in his final journey.  So sad he has to go through this at 64 years of age or any age is just awful.

Report this post      
Reply by Ogechi Asagwara (Ogechi@virtualhospice.ca)
13 Jun 2019, 9:30 PM

I am sorry to hear of these challenges with your husband’s restlessness and agitation symptoms. I imagine that was a very difficult thing to witness his angry outburst and him exhibiting physical aggression towards you - likely very much not himself.  

In such a difficult situation, it is great to hear that you feel well supported by the hospice team caring for your husband. It might be helpful to revisit with them if there is anything more that can be done to further address the restlessness and agitation he is experiencing, promoting further comfort your him and you both. You may have already, but if not, relaying what you have specifically witnessed (the aggressive actions and outbursts) to the health care team (particularly the physician) can help further inform their thinking and their approach to his care. Truly, loved ones spending time at the bedside, often have critical information to share. 

Perhaps a sit-down conversation with the head physician involved would be helpful, so everyone can put their heads together and discuss the situation. Sometimes this is called a Family Meeting, a meeting that brings family and involved care providers together to discuss a particular concern or issue. Alternatively, you could also have a more informal chat with the physician about this but either way communicating your observations and concerns to them would be important. There are several medications that are commonly used to help manage these symptoms, and sometimes doses need to be adjusted based on the situation at hand. These are all things the physician would be able to discuss with you, specific to your husbands case.

Generally speaking restless and agitation (terminal or otherwise) can absolutely be a complex symptom to manage. There is an article on our website that talks more about this, and might have some helpful information for you. You can view that article by clicking here.

Understandably these symptoms can be very difficult and emotional to witness, people sometimes feel they have “lost” their loved one even before their death because they are so much unlike themselves. This can be hard. I encourage you to continue to be patient with yourself and how you are feeling. Your love and support for your husband I’m sure comes through to him, despite his current state.


Wishing you well,

-Ogechi (CVH Moderator)
Report this post      
Reply by Jopatte58
18 Jun 2019, 12:46 AM

We did meet with the doctor and have taken steps to administer the medication before it gets out of control and I am finding that I make sure that I get him outside before the supper hour so he has fresh air and I even let him feel his feet on the ground while sitting in the wheelchair which seems to help.

Luckily that was a really bad incident - basically when he is calm I am calm - thank you for taking the time to provide suggestions that I feel are not eliminating the restlessness and agitation but making it more tolerable



Report this post