Category Archives: hospice

Feeling Expendable and Vulnerable

So… It’s been quite a week…. Someways are okay… some ways are really good… and some are really really scary.

Bear has been walking about 20 min to 30 min every couple days on the treadmill. He uses his E tanks for that. We had 3 empties and 4 full and it was time to order more. It was even MORE time to order more because we were under a high wind warning. If we lost power we would need to be able to rely on tanks. Lincare isn’t delivering any more (pandemic). If you need O2 supplies, load your tanks into a car and haul your oxygen dependent (wait wait wait… oxygen dependent… doesn’t that imply you are one of the AT RISK people???…. piss off skippy) butt to their office (about a 30 mile round trip) and bring your tanks in to be replaced. They will not leave them on the porch (where they have ALWAYS left them… the only time they have EVER had human contact at our house was when they put in the machines).

So let me get this straight… if I weren’t reasonably fit, or if we didn’t have kids living with us… say I was bed bound or wheelchair bound or didn’t drive or whatever… my oxygen dependent person would have to do this on their own in an UBER or Lyft???? Seriously? I get social distancing (BELIEVE me I get it) and I get being very cautious. But if you are in the business of delivering that which keeps people alive, you are in the business of delivering that which keeps people alive regardless of whatever. There are ways around this situation. Me leaving bottles on the porch and them leaving the new ones next to them and no one having to be anywhere near each other is one freaking way. They keep billing me for the empties though… hell yeah.

People don’t matter.

Bear and his Dr decided it was time to start hospice. Palliative care might have sufficed but, with the pandemic still rampant (despite the glowing optimism of our… uh… “leadershit”), they aren’t scheduling palliative care people. So you either struggle not to drown or you find alternatives. The alternative was for hospice to start coming. So we are now on hospice and that thought is just scary. But the hospice people treat you with respect and dignity and are helpful. They got us off Lincare and onto their O2 supplier and told us what we need to do in case of power outages and in case of whatever whatever whatever.

I felt like people matter to them at least as much as the money.

Then last night on the news they reported about the Cleveland Ambulance company…

Apparently the rules have changed for them. If you have a heart attack and need to be revived and are either Covid positive or are even suspected of possibly being Covid positive (who makes that judgment call? and… what if it is someone who is in any way prejudiced) they are supposed to try to revive you on the spot but if (after 20 min of effort) they can’t, they are supposed to leave you there. No loading you into the ambulance. No taking you to the hospital. After 20 min leave you there. Just leave you there. If you are SUSPECTED of Covid. Most heart attack victims are the people who are going to be most susceptible to the virus any way.

People don’t matter. Money matters.

And then, last night, something wonderful happened. I was drug aside by Monkey butt to talk about summer. The Young Lad won’t be back north until end of June or early July… but when he gets home, the boys want to do an hand fastening ceremony in the back yard. They would go the whole legal beagle way of wedding if it wouldn’t mean The Young Lad would have to almost triple what he is paying for college and he is so nearly done anyway but they want to do something lasting and binding so Bear can be there to see it. It made me cry. It didn’t make bear cry. It made him smile really big. I’m looking forward to all of this. It is going to mean the world to everyone because bear will get to be there to see the boys married even if it is without a license.

Maybe there are some small shimmering lights left in the world.

I’ve started to feel like there is so little I have any control over at all. Nearly nothing in fact. But then something happens that fills me with hope and I think maybe it will be okay.

I may never be quite the Mary Sunshine I was. I may have become a wee bit harder because I see that there is little redeeming goodness in a lot of people. But there is in some.

I’ve spent a LOT of time neck deep in hot water on the floor of the walk in tub crying this week. I will spend a lot more time there crying going forward. Stress is making my hands hurt an awful lot… It’s going to be an incredibly hard next few months… but… I’m starting to think maybe I can hold it all together.

Love and Light
AprilJoy
4/16/2020