Bed-Apathy & The Reality of Caregiving

Bed-Apathy & The Reality of Caregiving

Bed-Apathy: (Not an official medical term as of now, but a term I created and use.) A state in which an individual, often an elderly or ill person, experiences a profound lack of motivation to move, eat, drink, or engage while remaining in bed. However, once they are encouraged to get up, dressed, and reconnected with their surroundings, the apathy fades, and they regain their awareness, appetite, and engagement with life.

People ask how I manage my father and my caregiving. To me, it’s not just about following routines or assumptions. It’s about adapting, observing, and responding to him as he is right now, not as he was yesterday or might be tomorrow.

Routines are a foundational pillar of daily life with dementia and the elderly, providing structure, stability, and a sense of familiarity. But routines alone are not enough. Dementia and aging aren’t linear. They shift — sometimes drastically. Meeting those changes requires real presence and awareness.

Falling into accepted patterns, thinking every new challenge is just part of the "disease" or brain damage, can cause us to miss critical clues. Small shifts can signal something deeper — pain, distress, emotional withdrawal — things that demand a response beyond just routine care and beyond assumptions.

When bed-apathy sets in, I don’t wait for my father to choose to get up — I make sure he does. Left in bed, he always falls into that apathetic state. He won't feel hunger, thirst, or the urge to engage. He will just sleep, snooze, and withdraw. But once he's up, dressed, and away from the bed, he reconnects. He wants to eat, drink, talk, ask questions, and engage in life again.

This apathetic state can sometimes be a sign of fading or progression, but not in all cases. If someone comes to life once they are up and moving, then they are not at that final stage yet.

Caregiving isn’t just about keeping someone comfortable. It’s about recognizing what keeps them connected to life. And that requires more than just structure — it requires true presence. We must listen to the experts, we must educate ourselves on so many things, but we have to realize that what we learn are typically averages, and not 100% in every case.

There is no such thing as cookie-cutter solutions in dementia, in elderly care, or for you or me either. There are varieties, variations, and sometimes mutations. We must be proactive, not simply reactive.

As a family caregiver, I live this. I don’t simply work for it. It is not a job — it is a life. I don’t work on an assembly line, clocking in and out. I am living this, because the real truth is, this is my life too, not just my loved one's.