Dad Has Dementia

Week 28: Is This the Way Hospice Is Supposed to Work?

Last updated: Jul 23, 2010


Many people think of hospice as a place. In fact, hospice is a mode of treatment that can be done anywhere. In the U.S., in accordance with Medicare guidelines, all initial hospice treatment is performed in the home. Only the 'actively dying' or those with uncontrolled symptoms qualify for in-patient hospice care at a facility.

That's why my home looks like a disaster area. The dining room has been hastily cleared out, its furniture shoved into the living room, which is now uninhabitable. Meanwhile, a warehouse of hospital equipment has been moved in: adjustable bed, hospital table, Hoyer lift, bedside commode, wheelchair.

But it's not the disarray that bothers me. It's Dad. He's out of control.

On this Monday morning, his hospice nurse and I sit on chairs at his bedside. Dad is trying to kick me in the head as he rails angrily about needing to get out of bed. He's extremely agitated and has been this way for the past two hours. The nurse tells me this is called terminal agitation. It's not helpful that she also tells me Dad's is the worst case she's ever seen.

Dad has been severely agitated since Sunday morning. For over 24 hours, Lee and I have had to spend most of our time "“ day and night "“ at his bedside, dodging skillfully aimed punches and avoiding Dad's nimble attempts to grab our individual fingers and twist them. He's spat on us, slapped us, pushed and shoved us. He's cursed us, screamed, and hollered. We don't take it personally because it's clear he's not in our reality. We can't figure out where he gets the energy to be so combative for so many hours on end. We, ourselves, are so weary we can barely see straight.

We've pumped Dad full of haloperidol, lorazepam, and morphine "“ all highly potent anti-anxiety and pain medications "“ yet still he fights. He needs to be admitted to in-patient hospice temporarily, the nurse says, to get his symptoms under control.

That would be great, I say with relief.

Several hours later, however, the hospice nurse manager phones to tell me Dad will be staying at home. Despite the fact Medicare guidelines state Dad can be admitted under these circumstances, the truth is the hospice provider doesn't actually have a facility to place him in. My anger leaves me temporarily speechless.

And so, Lee and I face yet another sleepless night as we try to stop Dad from getting out of bed and hurting himself. The hospice provider refuses to assign a nurse overnight, so it's up to us to deal with this psychotic, 220-pound man. Sometimes his behavior is so disturbingly violent I weep quietly at his bedside. I worry he'll not only hurt us but himself, as well. Lee and I feel totally unequipped to handle the situation, but we're on our own.

I feel our hospice provider is failing us, but what can we do? It's 2:30 in the afternoon, and Dad is getting wound up again after a few hours of sleep. It's time for me to force our hospice provider's hand.