Kicked out of Hospice

Just when we finally thought we were on the same page with our hospice provider, we got kicked out of hospice.  Maybe I just complained too much.

We knew recertification was coming in February.  When I asked what the process involved, we were told we’d have a face to face with the nurse practitioner.  I’d been preparing a list.

But we got a call at 5 today.  “We’ll be there tomorrow for you to sign the discharge forms.  The decision was made today.  He’s stable.  He doesn’t meet our criteria.  You can appeal.”

What kind of care is that to deliver news of such import with no preparation?  No empathy for what that might mean to us.  I cried for 45 minutes.  I don’t have any energy left for this.

I guess I was too good at being positive.  I want to give up.

How can they say he hasn’t declined?  He’s lost more than 30 pounds.  Without major preventive measures, he has constant skin breakdown.  He’s lost so much dexterity I have to feed him many meals, and many others he just can’t eat at all.  He barely makes eye contact.  You can’t hear his voice.  He needed morphine this week his breathing was so bad.  He was so weak last week he slid to the floor and we needed to call the non-emergency 911 number for help to get him up.  He had an episode  this week where he got dizzy then just went limp, eyes rolled back, no response to my voice.

They say he’s stable.

So as of tomorrow, no CNA, no medical equipment, no medicines, no nurses checking him out.  We have to re-engage with all his physicians, go to their offices to get them reacquainted with his new symptoms, get new prescriptions for meds, obtain new durable medical equipment, fight with insurance for coverage.

This stinks!!  I hate this!!! I want to give up!!!

We didn’t see this coming.  It’s a terminal degenerative disease and he’s at end stage – how can it be stable???

Life isn’t fair in so many ways.


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