Part one of this saga is here.
Part two of this saga is here.
This (all-true) story is bumming me out, so I’m going to power through all the rest of the details in this post. I’ll get to an epilogue in a couple days.
So there I was, finally let in to see my terrified and very, very sick stepfather in a room in the ER. In the previous three hours, he had had blood drawn, some tests done and was hooked up to antibiotics and fluids. He was diagnosed with pneumonia and dehydration.
We spent five more hours there. It was maddening. I ran home to get a coat and phone charger then came back and waited and waited with John, amidst a cacophony of beeping machines, screams of injured Friday night drunks, and bewildered questions from the poor old man.
Deafening alarms would periodically go off from one his machines, and were ignored unless I tried to catch the eye of someone — anyone — wandering around outside our curtained room. Every single member of the staff did everything s/he could to avoid and ignore anyone who wan’t a fellow staff member. I felt invisible and like I was going absolutely insane.
Even though I didn’t see him until the end of the night, the attending physician sounded like a standout asshole among a whole lot of assholes. He was the person that needed to see us, to assess the situation, interpret the lab results and give the okay to the next step. Every time I’d ask a nurse when we could talk to the doctor, I’d get a hushed “oh, he doesn’t like to be pestered too much.”
At one point of the night, he ordered a urine sample. A nurse and aide marched into our room, ordered me out, and proceeded to bark at John, demanding that he PEE! NOW! into a bottle. He was crying and pleading as each one of them got in his face. The nurse shouted at John: “Mr. ________, we are going to have to put a needle in your penis if you do not cooperate, do you want that?”
That’s when I burst in and got them the fuck out of there. After calming John down and treating him like a human, I tried to get him to pee, to no avail.
[I found out afterwards that something they were testing for — bacteria in the blood, something that John turned out to have, causes a side effect: inability to urinate.]
But we didn’t know he had bacteria in the blood. In fact, at 1:30am, the doctor declared that John was fit enough to go home, even though
- he obviously wasn’t;
- I made it clear I had no way to get him from my car to the house (let alone take care of him);
- they did not get back all the lab results, including the one for bacteria in the blood (which causes sepsis).
After his IV needle was pulled out too roughly (and John’s blood spraying everywhere), after my tearful pleas that that was NO WAY I could get him home and take care of him, after the both of us being dismissed and ignored and mistreated, I had to bring John home, all by myself.
This is the point I get these questions: “Why didn’t they admit him to the hospital? Why didn’t you demand they admit him?”
To this I answer: don’t you think I would’ve if I could’ve? Put on my shoes and see what you would have been able to accomplish. I had no one to talk to about my options. There were no advocates; I have never been in this situation before. Everyone conspired to make it seem like I had absolutely no choice but to get him home, that night, on my own steam.
Which I did, with great peril and many, many tears.
The next morning, after making sure John was not dead, I called my sister A and told her I was about a second away from getting in my car and leaving forever. Thankfully, she talked me down, and thankfully, a couple people came over to help out.
As I was lying in a dark room, trying to compose myself while people were there to watch John, the neighbor came by.
Here, he said. It was a piece of paper; written on it was “Bob” and a phone number.
They called my house for John, he said. Don’t know why.
I called the number. It was the hospital where John had been. Since I only had the name “Bob,” it took me forever to find the right Bob. Turned out he worked in the lab.
“Mr. ___________ needs to come in immediately. He probably has sepsis. It’s urgent.”
Click.
Thanks, Bob.
[Why the hell did the hospital call my neighbor? They did not call my cell nor our house number, both of which I made sure were on the forms. I deduced that they called the “in case of emergency” number from John’s ID wallet. Seriously.]
Fortunately I had others to get John to the ER this time. They spent about 4 hours there, getting chest x-rays and other tests, administering antibiotics and watching John’s blood oxygen levels fluctuate alarmingly.
At least, I thought, they’d admit him to the hospital to get the care he desperately needs. Sepsis is extremely serious.
In the meantime I spoke to John’s caregiver agency. I really needed guidance or at least a collaborative approach to figure out the care for John. Instead, I got this weird, slightly impatient “well, what do you want? 24-hour care? We can do that, but it’s super expensive!”
I was a wreck. I knew John was going to need medical monitoring and major care (including dealing with his total incontinence and help with lifting him) after he got back from his hospital stay.
At least, I thought as I tried to catch up on sleep, I have a couple days to arrange it.
That was the moment that John was brought back.
The hospital did not admit him, again. Apparently the threat of sepsis had passed, sorta?
I had to kick into gear and try to cobble together care for John. Somehow I managed, even though I was alone with him for large stretches of time (including overnight). Not pretty. Not easy.
It was two nights into it that I decided to give him a bit of codeine cough syrup (that his doctor prescribed) to help his horrible, wracking cough. He was very ill.
So, try Googling “dementia” and “codeine”.
Possible side effects can include paranoia, psychosis, and death.
Of course, I only Googled this after the fact, a two-hour middle-of-the-night ordeal.
John had a complete and total meltdown, literally screaming “they’re after me! they’re after me!” and trying to run, to fight me — he was absolutely gone. I thought he would die right there. I managed to get him into bed but he was inconsolable. It took a couple hours before he could calm down and I could see him again.
At this point of the story, I often get “are you going to sue your doctor or the hospital?” The answer is no, so leave it alone. I’ve related this story to many medical personnel and the most common reaction is a shrug, like “what are you gonna do, doctor’s aren’t going to know everything, hospitals don’t like to admit people.”
My after-the-crisis to-do list was growing (steps 1 and 2: fire the doctor and caregiving agency). The week continued in a haze. I had a phone meeting with the family members that care about John, and they were very kind and helpful (and regretful that they did not live closer).
My sister-in-law, who’s a nurse, was the first and only person to mention to me that home nursing aide care is available and covered by Medicare, if one’s primary care physician ordered it. So I got him to order it, but it came laughably after the fact; the first nursing visit only happened last week.
So it went. I experienced a week or so of sleeping in short bursts, cleaning pee and puke and poop, marching like a zombie through a haze of fear, frustration, and feeling overwhelmed at all times. Trying to work at my job, trying to achieve my personal best at not changing out of pyjamas, trying to feel like there was hope.
And John? He was and is a champ. His dementia mercifully erased the traumatic memories of the horrible stuff he went through, he has maintained a (relatively) cheerful demeanor, and is healing faster than probably you or I could from his illness.
We’re both on the other side now. I’m feeling relieved that the crisis passed, but there have been many hard lessons learned and decisions made, and so so so many phone calls.
More later. The wrapup.
Go to Part 4
