
After seven years as a hospice nurse, the hardest part of my job isn’t dealing with death – it’s watching families realize what hospice care actually entails. I see the same scene play out week after week: the shock, then disbelief, then panic when families understand they’ll be providing most of the hands-on care themselves.
Here’s what most people don’t grasp until they’re in the thick of it: When we say “home hospice,” we mean you, the family, are the primary caregivers. That Medicare-covered hospice benefit? It pays for a nurse to visit once or twice a week, to manage symptoms, and provide guidance. It covers medications for comfort, a hospital bed, and basic medical supplies. But it doesn’t cover the round-the-clock care your loved one needs.
Let me be brutally honest about what this means. When your mother becomes bed-bound – and most patients do in their final weeks – someone needs to turn her every two hours to prevent bed sores. Someone needs to change her adult diapers, clean her when she has accidents, feed her, give her medications, and help her with every basic need. Our certified nursing assistant (CNA) might come two or three times a week to help with bathing. But that’s it. The other 165 hours of the week? That’s on you.
I’ve watched adult children break down crying the first time they have to change their parent’s diaper. I’ve seen spouses physically and emotionally exhaust themselves trying to provide 24/7 care. And I’ve had countless families tell me, “I had no idea it would be like this.”
Your alternatives? You can pay out-of-pocket for private caregivers to come to your home. For round-the-clock care, you’re looking at thousands of dollars per week. Or you can move your loved one to a facility – but remember, Medicare won’t cover the room and board there either.
What makes this even more frustrating is that hospitals often push for quick discharges once a patient enters hospice care. They’ll tell you about all the wonderful support hospice provides – and don’t get me wrong, we do provide valuable support. But they often gloss over the fact that you’ll either need to become a full-time caregiver or pay substantial amounts for private care.
I remember one patient’s daughter telling me, “I thought hospice meant someone would be here helping us care for Mom. I can’t believe we have to do all this ourselves or pay thousands we don’t have.” She was working full-time, had three kids, and suddenly needed to either find $4,000 a month for private caregivers or somehow provide the care herself.
This gap in coverage isn’t just a financial issue – it’s a dignity issue. So often I see families forced to choose between impossible options: Drain their savings? Quit their jobs to provide care? Struggle to provide intimate personal care they’re not trained for? Move their loved one to a facility they can barely afford?
As a hospice nurse, I provide all the support, education, and care I can. I’ll teach you how to turn your loved one safely, how to give medications, how to provide personal care. I’ll be there to manage symptoms and guide you through this journey. But I wish I could do more. I wish I could tell you that our healthcare system won’t leave you struggling to provide hands-on care during one of the most emotionally challenging times of your life.
Until our healthcare system changes, the best thing I can do is make sure families understand the reality of hospice care before they’re in crisis. Yes, hospice provides crucial support for dying patients. But families need to know that the day-to-day hands-on care will largely fall to them – or their wallet.
Because in the end, no one should have to figure this out while they’re already grappling with the imminent loss of someone they love.
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