Our second hospice discharge appeal was denied. We’re out. I could have continued for another round of appeals but I didn’t have the energy to spend. Goodbye hospice, we’ll focus on living.
Larry said something yesterday morning and as usual I couldn’t hear or understand so I got up from my chair and leaned my ear to his mouth and still didn’t understand. So I asked for a one word category – “hospice,” he said. After a few more times I finally realized what he was trying to say:
“Now that they’ve kicked me out of hospice, I have to figure out what to do with the rest of my life.”
I love that guy!!!
After a full week of not sleeping, of advocating and arguing, the uncertainty is over. I’d be happy with the discharge if I believed they were right that his disease is stable but I know they don’t understand Multiple System Atrophy, which is a terminal disease with a rapid progression.
In retrospect, I think they always equated it with Parkinson’s Disease, which is no longer considered terminal because of available medications and does stabilize. This appeal they never even let me state my case that he had progressed on all four of the major causes of death in MSA: sudden cessation of breathing, aspiration pneumonia or acute aspiration, UTI, and wasting (weight and muscle loss).
So, we’ll reframe, move past our anger at the system. It’s wasted energy. Hospice isn’t good at slow dying. Their 2017 average treatment course was 17 days. We’ll see this as an opportunity.
I never liked the lack of privacy of all the in and out hospice visits. I never liked the inability to plan our day until I got their morning calls to know when they were coming. I always wished they acted more quickly on varied symptoms that seemed to be of no interest to them and then caused him serious discomfort.
I’ve already made an appointment with his PCP this week and we will start the process of re-engaging with doctors. My daughter called it “Medicare revenge spending” as I listed the round of doctors we could make instead of seeing the hospice nurse:
We won’t probably see all of them. But maybe the first four. This gives us an opportunity for him to get his systems and symptoms checked by the experts who are up on the latest research and treatments. We won’t have the CNA for help so I’ll have to be careful to preserve my energy, but we’ll manage. If we have an emergency, we’ll call 911. If I need support, I’ll call a friend.
We can focus on living rather than dying. In January we’d been practicing a “living mind-set” but lost it through this hospice battle.
Now we’ll focus on living… and laughing.
Larry just asked me “do vegetarians eat animal crackers?”