One of the harder symptoms to watch someone experience is something called delirium. There are other descriptions for it, such as restlessness, sun downing, hallucinating, or being out of one’s mind. It is something not just associated with dying, but seen often in the hospital or nursing home with serious illness or advancing dementia.
What makes delirium difficult is the altered mental state and the physical behaviors that go with it. These ideas and behaviors are often illogical, and nothing caregivers say or do can sway a person who is delirious. While delirium can be seen in many different diseases and situations, in the context of end of life care, it is often the hallmark sign that the body is transitioning to a dying state.
Terminal delirium, as it is referred to at the end of life, can present in many different ways. For some, it is an internal unease or restless energy. These patients tell me they feel an urge to do something, but can’t figure out what it is they want to do. Therefore, in an effort to displace this restless energy they may pick at their clothes, or rearrange their sheets in a perpetual way that never finds satisfaction. This is a common theme in terminal delirium, as whatever task someone who is delirious is trying to perform, it never satisfies the itch.
For some they are never physically comfortable, constantly wanting to change positions or move from bed to chair, back to bed again. Others get stuck on an idea, shouting they want to go home over and over again, regardless of actually being home, or calling for someone again and again, despite that person’s presence.
Hallucinations are not uncommon with terminal delirium and like the delirium itself, can come and go quickly; one moment seeing something not there and the next moment back in reality.
Probably the most difficult problem delirium causes for patients and caregivers is in the disruption of sleep. It happens more at night, so both parties don’t sleep, and usually the caregiver can’t catch up during the day and then the cycle starts again the next night. It’s a physically and psychologically daunting experience. There is also sub-acute delirium, during which a person sleeps in 3-5 min intervals, waking restless, only to nod off again for a few minutes. While from the outside it seems they are always sleeping, in truth they are never actually falling into deep sleep.
There is a reason almost everyone experiences terminal restlessness during the dying process, that being, death is unnatural. Everything within us is designed for life; our instincts, our cells, our organs, our psyche, all of it pushing to live. Thus when the biological part of us begins to shut down from the soul or psyche part, it creates a very real physical feeling. Therefore to spiritualize or psychologize delirium, we miss an opportunity to treat an exhausting experience with medications.
Delirium shouldn’t be dealt with alone; it will deplete what little strength a caregiver has. What delirium needs is aggressive medication management, education on what to expect and often the extra support that hospice provides.