Terminal Restlessness

It is not unusual to see an increase in confusion and restlessness in the final weeks leading up to death. Suddenly your loved one is agitated, paranoid and uncooperative. A very different view of how most normally expect a dying person to behave. Not every patient will go through this stage, but for those who do, managing symptoms, behavior and safety becomes very difficult. For my own dad, it manifested in this 6’2″ 250 lb man stumbling down the hallway from his bedroom down to the kitchen because he heard the hushed voices of visitors at the kitchen table. He couldn’t engage in conversation and was soon up and wandering to the sink as my mother tried to get him to sit on the couch or back to the safety of his bed. The process took an hour.

Terminal restlessness, as this stage is called, may present itself as frequently wanting to get up and stand but then not knowing what it is they want to do next. Increased weakness makes their walking unsteady and unsafe without assistance which they are very resistant to accept. Many times you must simply follow close behind and try to anticipate what they are trying to do, which is difficult as they themselves do not know what is driving them forward. Family members and staff find themselves moving the patient from bed to chair to wheelchair to bed again several times in a short period of time. It is important to try and determine any factors that may be adding to their restlessness. Do they need to urinate, or have a bowel movement, or are they hungry or in pain? In their confusion and agitation they may not be able to tell you or know themselves. A toileting/changing their brief schedule may help. Their confusion is often compounded by their agitation and you will see the patient aggressively pushing away at caregiver’s attempts to give medication, food, or stand by assistance. Many times at the hospice house a sitter, or in the home a continuous care nurse was required to remain in the room because the patient could not be left alone, which reminds me of a continuous care case I once had for a woman who was experiencing terminal restlessness. Her daughter was beside herself to see her usually easy going mother suddenly transform into someone she didn’t recognize and worse, didn’t recognize her. The daughter was exhausted because she could not leave her mother alone as she was always in a constant state of motion. I was there so that the daughter could at least get a night’s sleep knowing someone was there to keep her mother safe from falling. This restlessness can continue when the patient becomes bed bound and no longer able to stand and bear weight. They may move about restlessly in the bed, remove their clothes, their oxygen, or pick at bed sheets.

As you would expect, this is a very difficult time for the caregiver and support is needed. The caregiver is most surprised that there is no reasoning with a person in this state. They cannot follow direction, they do not understand that you are there to help. It’s as if the person is in the midst of a ‘fight or flight’ battle within their own minds. Keep in mind that just as one accepts the dementia person as not their normal self, so it is with the terminally restless patient. The patient is not rejecting you, is not really angry with you, and it is not happening because you have done something wrong. Your doctor may recommend managing the symptoms with medications given as needed or in scheduled doses to maintain a therapeutic level and response. Families struggle with the option of medicating to calm the patient versus the alternative of the patient being unable to relax themselves and using up precious energy stores. Terminal restlessness is a very difficult stage for patients as well as caregivers. As intense as this period can be, be aware that it will be followed by a rapid decline. It has been my experience that the next stage for the patient who struggled through terminal restlessness was imminence.

Read more on terminal restlessness here.

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