Patient Advocate
One thing that has resulted from all of this is that I've given up trying to make anything happen, to enact any one solution or strive for a particular outcome.
One doctor told me I need to be a strong "patient advocate" and I almost laughed.
None of us can get in to see her, or my stepdad.
We get a different story every 48 hours, depending on which hospitalist is on duty.
That means we also have to explain the entire complicated thing every few days, too: history of periodic, severe, but mostly managed mental illness. Pain syndrome. Opioid dependency. Emergent dementia. Pandemic. Isolation.
Each doctor or nurse has their own theory of what the real problem is, and prescribes a different course of action. I listen, but my eyes glaze over and I just murmur and wonder if we're even living on the same planet. I know the next doctor will say something different anyway.
And they call a different one of us every time. Sometimes me, sometimes my brother, sometimes my stepdad. Who, by the way, is growing increasingly confused and slurry himself while in confinement at the facility. So sometimes one of us gets information but then the other has to call back and get transferred three times and then sometimes the nurse answers and often they don't.
In the middle of all this, the hospital also started requiring a "privacy code" to speak to mom's nurse. That's fine, but I asked, "did you just institute this?" because I didn't have one, hadn't ever had one, even though I'd been talking to mom's caregivers for days. "No, you've always needed one," they said. I just laughed.
They probably think I'm crazy too.
The minute we do try to make something happen, to "advocate," the universe tilts again. We get Dad settled into Assisted Living and then all of a sudden Mom gets RSV. We get her to the hospital and it turns out she has dementia too. One doctor tells us she really needs to go to a skilled nursing facility, but guess what? No facility in America is going to take someone elderly and unstable with an upper respiratory infection right now. So now she lives in the hospital.
But at least we have my stepdad settled?
Except he needs surgery Friday because, never mind everything else going on, he still has prostate cancer and has to have the stent in his bladder replaced every 90 days.
I think for a while we just wanted both of them sequestered somewhere, as that would at least ensure they were cared for and had medical help if one fell or had an infection or what have you.
But that's a stupid dream, too. They're not any safer in medical facilities. And mom does have a respiratory infection, which will make her more vulnerable to COVID-19.
There are no good outcomes here. There is no "getting better." There is no, "phew, we made it." There is just waking up each day, observing what new, shitty thing is happening now, and then nodding at it, crying some, maybe screaming once in a while, then just sitting down to do a puzzle or watch a movie because what else is there.
I lost my father just last November. But I try not to think about that too much. I try not to read the stories of people dying alone in hospitals right now. I try just to focus on what is happening today, this hour, and to meet it where it is. None of it is going to make sense for a while.
One doctor told me I need to be a strong "patient advocate" and I almost laughed.
None of us can get in to see her, or my stepdad.
We get a different story every 48 hours, depending on which hospitalist is on duty.
That means we also have to explain the entire complicated thing every few days, too: history of periodic, severe, but mostly managed mental illness. Pain syndrome. Opioid dependency. Emergent dementia. Pandemic. Isolation.
Each doctor or nurse has their own theory of what the real problem is, and prescribes a different course of action. I listen, but my eyes glaze over and I just murmur and wonder if we're even living on the same planet. I know the next doctor will say something different anyway.
And they call a different one of us every time. Sometimes me, sometimes my brother, sometimes my stepdad. Who, by the way, is growing increasingly confused and slurry himself while in confinement at the facility. So sometimes one of us gets information but then the other has to call back and get transferred three times and then sometimes the nurse answers and often they don't.
In the middle of all this, the hospital also started requiring a "privacy code" to speak to mom's nurse. That's fine, but I asked, "did you just institute this?" because I didn't have one, hadn't ever had one, even though I'd been talking to mom's caregivers for days. "No, you've always needed one," they said. I just laughed.
They probably think I'm crazy too.
The minute we do try to make something happen, to "advocate," the universe tilts again. We get Dad settled into Assisted Living and then all of a sudden Mom gets RSV. We get her to the hospital and it turns out she has dementia too. One doctor tells us she really needs to go to a skilled nursing facility, but guess what? No facility in America is going to take someone elderly and unstable with an upper respiratory infection right now. So now she lives in the hospital.
But at least we have my stepdad settled?
Except he needs surgery Friday because, never mind everything else going on, he still has prostate cancer and has to have the stent in his bladder replaced every 90 days.
I think for a while we just wanted both of them sequestered somewhere, as that would at least ensure they were cared for and had medical help if one fell or had an infection or what have you.
But that's a stupid dream, too. They're not any safer in medical facilities. And mom does have a respiratory infection, which will make her more vulnerable to COVID-19.
There are no good outcomes here. There is no "getting better." There is no, "phew, we made it." There is just waking up each day, observing what new, shitty thing is happening now, and then nodding at it, crying some, maybe screaming once in a while, then just sitting down to do a puzzle or watch a movie because what else is there.
I lost my father just last November. But I try not to think about that too much. I try not to read the stories of people dying alone in hospitals right now. I try just to focus on what is happening today, this hour, and to meet it where it is. None of it is going to make sense for a while.
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