When the candle lights of home burn so very far away...

Medicare LIES to people.  When Dad was checked into the hospice facility on 7/7, we were all told that the plan was to get his pain under control, assess the house, and set him up with all the equipment and care needed to die at home.  Well, his pain is mostly under control, although it leaves him in a morphine induced state of paranoia.  The house has been scrubbed top to bottom, just waiting for the Medicare assessor to come and evaluate.  Yesterday, Mom and I met with a social worker to discuss Dad's discharge planning.  She said that Dad has "plateaued", and is no longer "in the process of actively dieing", so he can't stay in the hospice anymore.  We knew this might happen, we expected him to go home to finish dieing. Well, turns out that we've been lied to all along, and Medicare doesn't provide the care he needs after all.  They'll happily provide us with any equipment he may need, hospital bed, commode, catheters, etc, but not the people with the training and experience to use said equipment.  They'll only give us a Certified Nurse's Aid for 2 hours a day, 5 days a week, and a Registered Nurse for one hour, once a week.  There are 168 hours in a week, and all they'll provide is 11 hours worth of care.  Unless he can manage to only need a diaper changed once a day, and skip weekends altogether, that's simply not enough.

It's not even a time thing, Mom and I are both willing to be with Dad almost 24/7 from now until it's over, but we're simply not trained to prevent things like bedsores and stiff limbs, and we're certainly not properly trained to administer morphine safely on a regular basis. 

Dad's in a fog, but some things he remembers.  He remembers his family, he remembers that he has a baby grandson, and he remembers that he was told he would be going home to die.  Yesterday, after the meeting with the social worker, Mom and I broke the news to Dad.  He refused to believe us.  "But, Dad, they won't give us enough help to take care of you at home, we're only going to cause you more pain"  His reply was "What does it matter, I'm going to die anyway, at least let me die in my house, on my couch, with my dog next to me."  Kinda hard to argue with that kind of logic.  At one point, he sat up straight in bed, looked me dead in the eye, and in the clearest voice I've heard out of him in months, he said "Cerridwen, I always know when you're bull-pucky-rooney-toot-tootyting me.  Quit bull-pucky-rooney-toot-tootyting me, get me my shoes, get me some nurses, get me my pants, and get me the hell outta here, NOW!"  I know it was a stress reaction, and not at all appropriate, but my mother and I just looked at each other in wide-eyed shock for a moment, then both of us burst out laughing uncontrollably. 

I'm wracking my brain trying to come up with a way to provide the manpower needed to let him die at home.  I'm googling home care and hospices, but I just can't find a way around his damned insurance.  I find it shameful that he worked his whole life, paid his dues, and this is how he's treated when it's his time to go.  Insurance companies have no compassion.





Good god this just makes me ill.  Call around to local organizations like Neighbor to Neighbor, call churches and the town hall.  There are groups out there that provide help as an act of kindness.  You just have to find them.  Call the VNA and tell them your situation and ask if they know of anyone that provides nursing care for free.  There is an order of nuns, but which one is escaping me at the moment, who may be able to help out.   I'll let you know when it hits me.  In the meantime please know you, your dad and your family are in my thoughts. 



"what goes around, it comes around.  And you'll be coming DOWN"

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