Nowhere to Go

I've had a hell of a week. Of course, that often goes without saying when one interacts with the U.S. medical establishment. But I thought my experiences of the last week might elucidate how far that institution has degraded. Some of you might be surprised. I know I was.

"I keep trying to be a cynic, but it's impossible to keep up."
--Lily Tomlin

lily.jpg

We lefties (and righties who are interested in the truth) often talk of our medical establishment as "broken." But the course of our discussion generally shows that we mean "broken because the best possible medical care should be available to everybody, not just the rich." That's true, of course.

"I would accept that as an axiom."
--Mr. Spock

Spock.jpg

My experiences of the last few weeks have shown me that we need to expand the definition of broken.

Ten years ago, more or less, my mother's husband started showing signs of dementia. She cared for him until last December. In other words, she cared for him until it became literally impossible to do so. That choice would not have been mine, and it seems clear, now, that it was a poor decision. No doubt, if any apologists for the U.S. medical establishment read this, they will try to use that less than stellar choice to defend the establishment from criticism. In American politics, which consists primarily of character assassination, ordinary people and dissidents serve as the scapegoats that enable United States politics and economics to continue unchanged. In this case, the deflection of blame would be analogous to blaming people for not getting into a car with a broken engine in a timely fashion.

Most of the time, my mother's husband can't speak anything but gibberish, though he can still say yes and no. It's anybody's guess how much he can understand of what people say. While he was able to speak, he told my mother that he was having hallucinations. She had to remove pictures from the walls in her bedroom because at night, in bed, he thought they were people coming into the house. Near the end, he thought the kitchen counter was trying to kill him. He essentially no longer slept. And, of course, if he no longer slept, that meant my mom couldn't either. After weeks of this, she finally put him into an institution.

I say all this, not because I enjoy violating his privacy, but because it's imperative you understand the situation.

The institution was about like you'd expect: understaffed with people who are underpaid. Most of the staff were well-meaning but overburdened. The few who were not, who did things like leave their shifts without telling anyone and joke about giving patients incorrect medication, were able to continue their shitty behavior for quite a while before being caught and removed--because that's what happens in resource-starved institutions. There's little time for oversight.

But this is not a critique of the assisted living facility.

Last week, my mother's husband attacked two staff. He tried to strangle them. God only knows what he was actually seeing.

The staff, not surprisingly, called 911 and had him taken to the emergency room of our local hospital.

Which is where our story really begins.

You should understand that we have an above-average hospital. It's associated with a large university, and is probably the best hospital in the state.

Which makes what happened so much worse.

When my mom got there, they had him in restraints with a security guard on the door. But apparently, they had neither effectively sedated nor effectively hydrated him. He was still struggling against his bonds, alternately yelling and crying.

I had never in my life considered that a hospital in a post-industrial "developed" nation could fail to sedate someone who had quite literally transformed into a homicidal maniac. At this point, his mind was clearly nothing but a torment to him. Basic human decency should dictate that he should be knocked out. I'm saying this with his well-being in mind, not anybody else's, even my mom's. If I were in physical agony, shouldn't I be fed enough opiates to counteract the pain? Particularly if I were likely not far from death? Why is mental agony any different?

As for him not being hydrated, which basically means that they did not, at that point, have him on an IV, I can only ascribe that failure to the following:

"It looked like Syria."
--my mom

The emergency room had fifty-five patients on stretchers in the hallways. There was literally nowhere to stand. Twenty-five more were lined up waiting to be placed, I suppose, on more stretchers--there certainly weren't any rooms. "I thought it would get better when they built the new tower, but it's only gotten worse," lamented a nurse.

I will take a moment here to express my anger at his doctor, who had not managed to write him a prescription for a sedative though my mom had been trying to get that done for over two weeks. And as I criticize her, let me explain that, just as with the hospital, this is an above-average doctor. She gives her patients automatic weekly appointments. If you don't need to come in, you cancel. Thus, any time one of her patients needs an appointment, they never have to wait more than a week. That shows an unusual level of concern for her patients, at least in my experience.

This is how things play out with an above-average hospital, an above-average doctor, and money to pay for care. Not, let it be said, 1% levels of money. I'm sure no one with hundreds of millions or billions of dollars has to suffer through events like these. But we have enough money to cover the ridiculous expense of health care, at least for a while. I'm not telling the story of what it's like for a working person or poor person to encounter the American healthcare system. I hope that all of you are extrapolating while you read, asking yourselves "If this is what it's like for someone with money, what is it like for those without?"

If you can imagine this, there was actually debate about whether or not to discharge my mother's husband before he got stabilized on medication. In other words, before the right chemical combination, the one that would enable him not to try to strangle people, was found.

How could there even be a question about whether or not to discharge a man in that situation?

Eventually, they admitted him.

My poor mother was actually celebrating the fact that they admitted her husband to the hospital for stabilization instead of discharging him, a course of action which would never have been in question in a sane society.

As of this writing, we still don't know where we're going to send him once he's stabilized. Unless his aggressive behavior disappears on the new pharmaceutical cocktail, he will obviously need to be restrained, whether by sedation or actual restraints. It is apparently illegal for any institution other than a hospital to restrain people whether by sedation or actual restraints. I'm sure that the laws criminalizing the use of restraints were passed in response to elder abuse; I'm equally sure that about as much thought was put into those policies as gets put into cooking a hamburger at the local Micky D's. Putting the kindest possible interpretation on those laws, I'd guess that the legislators were reacting emotionally, without thought, to the problem of elder abuse. A more balanced view might suggest that they were simply doing the quickest thing possible to shut up whichever constituents were agitated about elder abuse. Carefully crafting a policy, which involves considering multiple possible intended and unintended consequences, was clearly not on the menu that day.

I hope it's clear that while I'm not thrilled with the hospital, they too, just like the assisted living facility, are operating with absolutely inadequate resources: not enough trained staff, not enough staff period, not enough rooms in either the emergency room or the hospital itself. What this situation really demonstrates is a catastrophic failure of policy, brought on by a catastrophic failure in both economics and politics.

Or perhaps I shouldn't describe it as a failure, but as a rousing success on the part of the elites who have, for most of my life, enthusiastically pursued the aim of dismantling every civilization they can get their hands on, including the ones they live in.

Just another day in the kingdom of the wrecking ball.

How are the rest of you?

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mhagle's picture

Horrific.

Like nursing homes in Texas.

Hope and pray your family finds quick resolution. Sad

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Marilyn

"Make dirt, not war." eyo

Cant Stop the Macedonian Signal's picture

@mhagle

It's good to have friends. Smile

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"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha

"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver

detroitmechworks's picture

Because it sounds like it's been hell.

American Bureaucracy in action. Last time I went to the Hospital, I had to wait hours, not for the treatment, which was over in minute, (Can't do anything with a broken collarbone, so off I go, here's your sling.) But for everybody else. Filling out the paperwork. Waiting to be entered into the system. Trying to arrange transportation on zero notice. (Don't tell me to use Uber, I don't feel like being tracked, thanks.)

The model is extended to almost everything these days. The Insurance vultures want their pound of flesh from EVERYTHING, and if they don't get it, they ENCOURAGE people to sue. Because it's the only way anybody will be SAFE donchaknow.

Ugh. Just glad to be writing again. Yes, it's porn, but it's writing. (Honestly it's more relationship story with gratuitous sex, but thanks to our culture's attitude towards sex, a character exploration about someone coming to grips with their relationship and communicating openly an honestly is considered Pornographic. Because my characters fuck, ENJOY it, and I don't charge money for the story. As of now, over 200 page equivalents to the first ending, and I'm writing four more. First ending was for me, now I'm just writing for my audience and what they want. 462 people subscribed, so I must be doing SOMETHING right, right?)

[video:https://www.youtube.com/watch?v=OjyZKfdwlng]

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I do not pretend I know what I do not know.

Cant Stop the Macedonian Signal's picture

@detroitmechworks

I'm not a genre snob. The only sound reasons for objecting to pornography are 1)ethical, if people are being abused, particularly kids or anyone else that can't give consent, 2)aesthetic, if the art fails to care about the quality of the story (filmmaking, painting, etc.) because getting people excited is good enough and who the hell cares about quality, or 3)personal, as in "I don't want pornography in my life right now and it's being shoved in my face." None of these apply to your work (at least, I *know* the first and the third don't apply, and, knowing you, I'm guessing the second doesn't either), so I don't see why your work shouldn't receive the same criticism and appreciation as any other work of art.

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"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha

"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver

detroitmechworks's picture

@Cant Stop the Macedonian Signal But the problem is that it's not the direction my muses are taking me. I want to get out and do some actual location scouting before I continue writing some scenes. Although my novel does have a fun thing to say about Hats. Smile (Been writing a few scenes here and there, but overall there's a LOT more research I need to do on it, and I plan on making this story GOOD and cheap... so it won't be fast.)

With regards to
1)yep, used to write that kind of crap. Just don't feel comfortable with it. I like my characters these days too much to hurt them. Even the stuff that's "Borderline" I still try to stay firmly on the side of "Nobody gets hurt permanent".
2) Considering I've read over and over this thing, added subtext (I know, right? I feel pretentious admitting to that, but I needed it for setting up the ending!), adjusted pacing, changed character motivation AND turned a character I used to hate into somebody that is kinda fun...
3)And lord knows I don't want to shove this in people's faces. I'm just acknowledging it rather than hiding from it. My kids don't know I write it, don't even know the handle I write under. Overall, it's just something that motivates me to wake up early, and then after an hour of that, (And doing my morning pages) I go about the rest of my day.

We need more "Ethical" pornographers, honestly. Unfortunately, as soon as money becomes a factor, people feel the need to cater to the basest desires of people. I'm hoping I'm SLIGHTLY above that. (FYI, first time I was ever accused of being a woman online was when I posted the first draft of some of my erotica. Apparently I have the characters TALK too much to be a guy...)

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I do not pretend I know what I do not know.

Cant Stop the Macedonian Signal's picture

@detroitmechworks

I didn't mean fictional characters. I was talking about visual pornography, where actual flesh people are involved.

Fictional people are a less clear-cut case and more interesting topic for discussion.

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"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha

"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver

detroitmechworks's picture

@Cant Stop the Macedonian Signal There's a lot of topics that are fun fodder for fantasy that should never show up in the real world. I've written a few. The funny thing is that I put so much of myself into my characters these days that I just don't want to hurt them. Smile

Now, on the other hand, there are lines I will NEVER cross. That's my personal choice, and I also have to respect other people's choices. I know half of the turn on for some people is the fact that you're crossing lines. As long as they don't try treat it as anything more than a fantasy, I'm fine with it.

OTOH, nothing pisses me off more than people getting shamed for their fantasies. Which honestly is why the piss tape controversy annoys me so much. My immediate thought when I heard about it was "So WHAT?"

On some level, I guess I think of it in food terms. I can't eat Sushi. I love the taste, but something about the cold sticky rice activates my gag reflex. If somebody offers me sushi, I'm not offended, I just politely decline. I think we need to have that attitude towards pretty much anything consensual.

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I do not pretend I know what I do not know.

Lookout's picture

plan on problems and poor outcomes.

So sorry for your family's challenges with the health system. Crazy how we treat our pets more humanely than our fellow human beings.

Losing your mind is such a dilemma. You don't have the mental capacity to solve or even cope with your problems. I hope if I slide toward that situation I will have the awareness to end my life instead of prolong my partner's misery trying to deal with the situation.

Schools are also dysfunctional, but (because profit isn't the driving force) our health system is far worse.

Best of luck to you and yours in dealing with this far too common problem.

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“Until justice rolls down like water and righteousness like a mighty stream.”

Cant Stop the Macedonian Signal's picture

@Lookout

By the time he started saying he didn't want to live like that, he no longer had the capacity to, well, do anything about it. So awful.

I told my mom the other day that it was so awful it offended me. As in, things like that shouldn't exist in the universe.

That said, while we (apparently) can't eliminate such diseases, that's no excuse for treating people so abominably. And the hell of it is, the staff in such places are not to blame; the people who are really to blame are out of reach.

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"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha

"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver

Cant Stop the Macedonian Signal's picture

I just couldn't maintain a cheerful aspect this week.

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"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha

"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver

Anja Geitz's picture

@Cant Stop the Macedonian Signal

And there's a time to weep. No apology needed. Will be thinking about you and hoping you all get through this okay.

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There is always Music amongst the trees in the Garden, but our hearts must be very quiet to hear it. ~ Minnie Aumonier

I was a third-string caregiver for my aunt who had dementia, and I had my parents in my home for ten years before they passed. Dad had dementia, so did mom eventually, but not as bad. Bottom line, I totally agree with you that keeping dementia patients in ones home is not the way to go. What should have been final tender moments with my parents were turned into recriminations, resentment, and guilt for everything I or they did or didn't do right or wrong. Ten years after their deaths, I still feel regret every time they come to mind.

I clip and keep a file on dementia with terror in my heart. I have instructed everyone that I want to be put into a clean and properly staffed institution and visited (supervised) regularly by family. Under no circumstances do I want to reside in anyone's home. I had a friend who put her demented father into an institution and hired a woman to come in for 4 hours every day. She made sure he was clean and fed and then read to him the rest of the time she was there.

There is no magic cocktail to calm a dementia patient short of unconsciousness that I am aware of. Many drugs just exacerbate the situation. Sundowners is more predictable and worse than a colicky baby up crying all night. At least the baby isn't big, ambulatory, and strong. If they keep your mom's husband physically restrained, you will soon be fighting bed sores and other complications. Not a good way to go.

The incompetent state of our doctors and the medical system is not isolated to dementia. Access and affordability are but the tip of the iceberg. Medical devices are another whole nightmare as are doctors not looking beyond what the mfg's rep tells them cause like they're so honest and without any conflict of interest.

I am sorry for you and your family. It is hell, intense and interminable for all involved. I wish your mother's husband a swift and merciful passing.

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"Religion is what keeps the poor from murdering the rich."--Napoleon

Cant Stop the Macedonian Signal's picture

@dkmich

Honestly, at this point I think unconsciousness would be merciful for him.

My poor mother.

Speaking of which, she asked to spend some time with me this morning, so I'm gonna have to leave y'all. I will check in later. Hope all of you have the best day possible.

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"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha

"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver

Anja Geitz's picture

@dkmich

Thank you for sharing it.

Hugs

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There is always Music amongst the trees in the Garden, but our hearts must be very quiet to hear it. ~ Minnie Aumonier

Steven D's picture

if not surprised in the least.

This is why suicide is more and more often considered among people who learn they have Alzheimer's and or dementia.

America's social contract, which was never very fair, but had some value, is in the process of being repealed permanently.

This story is real, but also a symbol of how degraded our society has become.

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"You can't just leave those who created the problem in charge of the solution."---Tyree Scott

studentofearth's picture

with each segment working on maximum profit taking is shocking on how ruthless it has become. Always part of the system, but now like a frenzy of taking what profit is available before is is nationalized or bought by a bigger corporation. I am so sorry your family is having this experience.

No easy answers. I have been on the side for justified use of sedatives, antipsycotics and other chemical restraints since the early 1980's when there were no regulations of use in any type of facility. Politicians as a group have been very hesitant to place language in laws to restrict use and override deep pocket donor objections. One pattern has been consistent. Higher use of restraints results in lower the staff to patient ratio and many tragic outcomes for patients.

I have not seen a state or federal regulations that would prevent a medication to be tried in the situation described at an institution. The use of a med may have required extra monitoring for effectiveness, side effects or the oversite of patient care by certain level licensed healthcare practitioner. As cost saving measure the facility may have chosen not to occur the extra expense or obtained the facility license to provide that type of care that was required. Assisted living, residential care, memory care and group homes are regulated by the individual states and change often enough most of us can't rely on what our past experiences to know the current regulations. Which leave the easy excuse of "we can't be because of the law". The law actually has little bite, but civil suites are expensive.

Hopefully he fares better at the hospital. Emergency room admissions are appalling, at times it appears billing status has more impact than the medical situation. What you experienced should unacceptable, but is becoming more common.

In most hospitals today, care is provided by staff physicians without input from a patient's regular physician. So sometimes there is an inconsistency of meds used in the hospital to treat, then stabilize a patient and the discharge medication orders. As a family member trying to know what is happening to prepare for discharge it is constant challenge.

Overwhelmed is how most of us would feel. Sorry this comment turned out so long. If you have a specific question or need to vent please PM.

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Still yourself, deep water can absorb many disturbances with minimal reaction.
--When the opening appears release yourself.

Anja Geitz's picture

For you. For your Mom. And for your step dad. I was thinking about you for the last couple of days and worried you might have come down with something again. But I never imagined this.

My Mother died of liver disease and was cared for in a hospice with my Sister close by. I was in New York when I got the call from her telling me my Mother didn't have very long. During my connecting flight in Cleveland the next day, I called my sister to give her my flight number. The minute she said hello I knew my Mother had already passed. In fact just moments before I called. I spent the rest of the flight completely numb. The only time I broke was when I saw a young Mother with her baby and I thought to myself "that was when my Mother loved me". Losing your Mother is devastating when the two of you are close, but it is a life sentence of regrets when you are not.

I can't imagine the distress your own Mother is going through watching someone she loves suffer this way. I have few words of consolation other than to hope your step dad's pain is relieved very soon.

Hugs and tears.

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There is always Music amongst the trees in the Garden, but our hearts must be very quiet to hear it. ~ Minnie Aumonier

But THAT is some Major Suckage as we say!

The fact you can write about it so coherently, and respond to comments speaks Volumes to me about your intestinal fortitude. My condolences on your current situation sometimes you're the bat, this itime it sounds like you're the ball.
It's a situation No One should have to endure in a supposedly Civil Society.

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Ya got to be a Spirit, cain't be no Ghost. . .

Explain Bldg #7. . . still waiting. . .

If you’ve ever wondered whether you would have complied in 1930’s Germany,
Now you know. . .
sign at protest march

through this hell. In my family as well, we have a member or two, it seems that goes through something similar every year. Sometimes we and they are blessed and the end is as best as could be hoped. Othertimes, ...it has been hell (I would say 60:40, negative, a lot better than most though it seems to me).
Several family members are nurses or doctors, so they tend to be strong advocates for their family members, and help explain the situation to other members of the family, but it is never easy. More often than not, the medical professionals of the family know what is standard procedures and what OUght to be done and end up having to tell people to do their damn job.
A few other things that occur to me *please don't take this the wrong way* this is my personal experience and was true for a few of my relatives and probably doesn't apply to you. So...first: I don't know how to properly care for folks with mental illness that need to be institutionalized, and I know that here in Oregon where I am the ideas seem to swing back and forth without the incremental improvement we hope to see in other diseases. In Oregon, like in many places, we institutionalized, and kept heavily drugged, many mentally ill patients (think "One flew over the cuckoo's nest"). Patient's rights advocates have helped to change the rules for medicating patients, but that really applies to long term admissions I would think, not to ER admissions. And, yes, ER docs can be assholes. They act like they've seen it all and smirk at your pain as if they've seen worse (but haven't actually experienced it, hmmm)...The truly macho might even undermanage pain because it gives them more insight into what is going on physically with the patient. (if the patient is "expressing" pain, they are alive. It's like a built in medical monitor that our system just hasn't invented yet so that it can be capitalized on).
Anyway, last point...has your mom's husband had all of his medications recently analyzed by a geriatric specialist? A family member was experiencing scary hallucinations in hospital. From what I understand, it was traced to a pain medicine, tramadol I think, that in the elderly can be metabolized differently, or with different flux through the breakdown pathway, such that a metabolite accumulates that is hallucinogenic. Changing the pain medicine made a huge difference in the quality of this person's life and their interactions with family over the last few weeks of their life.
I know these anecdotes probably don't apply to you, and I hesitated a good deal in even writing. A part of it feels like I'm saying I'm some sort of expert or kind of mansplaining or some such. I hope you don't take it that way. If nothing else, I think many of us here have loved ones who are reaching that age and perhaps some of these shared experience will help someone else.
Peace to you and your family.

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mimi's picture

I don't want to go into personal family stuff with regards to slowly sliding into dementia with the one who is sliding into it, not realizing it and being completely opposed to go into an assisted living facility. But I have only family related experience.

The real difficult thing is that you can't force a person to accept to move into a elderly care nursing home/assisted living facility etc. To enforce such transfer into a facility, it would mean you have to do something against the will of the loved one, you care for. That is illegal, without declaring the loved one officially to be what they call in Germany 'geschäftsunfähig' (incompetent as being 'uncapable of contracting').

That status has to be diagnosed and declared by the local government's social welfare office, which is hard to achieve, if the patient is completely opposed to let an offical evaluator come to the house, or if the patient is opposed to any person to take care of those things, the patients can't do anymore by themselves, without realizing that they can't. I have been pretty amazed what kind of cognitive dissonance that is I have seen lately.

Both my parents did pass away in their home and help came from a paid for care-giver for an hour in our house and by a long-term caring person, who worked in our house and was paid for during the last fourty years of my parents being still alive. She was the real care-taker.

Usually neither kids do a transfer into an institution with their parents, nor parents would do that with their kids. They rather try to care for each other in their homes, but it is ... hard work and not easy on the care-givers emotional health. On top of that, most people wouldn't have the money to hire a care-giver to perform the necessary work in the home of the person, who needs the care-giver.

In my neighborhood there is a high percentage of elderlies. People get into their late nineties much more than they did fifty years ago. Some completely fit mentally and almost not needing any more care than a device to assist walking. Others are much younger, worse off mentally or emotionally. Each case is unique, it seems. Around here there is the saying that the care-givers in the assisted living facilities all end up alcoholics one day, because the work is that hard, demanding and unforgiving with regards to the impact their work has on them.

All I know is that I would try to find a assisted living facility and make sure I can afford to get into there before it's too late. But as that is extremely expensive, I would try to delay that as much as possible. And I wouldn't want to burden my child with my probably slight dementia problems.

One can only have highest respect of your mom. Hugs through the ether.

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travelerxxx's picture

While there's nothing I can offer you except my best wishes and yearnings of relief for all involved, I do want to mention that I've seen how tough this is on all sides. My ex-wife was/is a nurse at an "old folks home" in the Midwest. That facility is primarily an Alzheimer's care facility. As you can imagine, they are/were as short staffed as everywhere else.

I can remember my ex coming home after any day there, totally exhausted. She was often completely devastated emotionally, and from what I could gather, so were all her co-workers. It took everything and then some to deal with the patients; many of the men were physically violent if not restrained. Most of the men had farmed all their lives and possessed great strength, even in old age. My ex often came home with bruises.

The staff at that home should have been double what it was, and the education probably tripled. Many of the nurses were working up to 60 hour weeks, and they should have been working no more that 30 considering the toll taken by them.

I truly wish I could offer more than my deepest sympathy, CStMS.

*****

Also ... You stated this:

The emergency room had fifty-five patients on stretchers in the hallways. There was literally nowhere to stand. Twenty-five more were lined up waiting to be placed, I suppose, on more stretchers--there certainly weren't any rooms. "I thought it would get better when they built the new tower, but it's only gotten worse," lamented a nurse.

"It looked like Syria."
--my mom

I'm not really so sure it looks that bad in Syria. Perhaps it does immediately after some bombing run has devastated the civilian population.

People stacked up like cord-wood in hospitals? My God. What the hell has this nation come to when we have this?

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Cant Stop the Macedonian Signal's picture

@travelerxxx

thank you for your kind words; let me assure you I don't blame the staff. Except the couple of bad apples who were laughing about deliberately switching patients' medications, and there are assholes everywhere; that's why systems need to be well-organized, to catch the assholes and check or remove them as soon as possible...most of those people are doing brutally exhausting work for low wages.

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"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha

"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver

TheOtherMaven's picture

I hit that wall myself almost two years ago now. Dementia isn't the only situation with which the untrained-but-willing can't cope. Late-stage Parkinson's is another. It's even more treacherous, because the mind is the last thing to start failing. Balance goes, coordination goes, medications get increasingly complex (and changing them carries more risk than anyone wants to admit).

And the deadly catch with Parkinson's is that when you must admit your loved one to the hospital because you just can't cope any longer, that in itself may be - and in this case was - the trigger for the final slide into oblivion.

They don't warn you about that either.

It was a crazy seesaw two and a half weeks, first hoping they could get his meds rebalanced, then hoping there was some possible recovery from the crash, then facing up to the fact that the limits had been reached and it was better to send him to hospice and let them give him what comfort they could. (He lasted four days in hospice. Just four days.)

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There is no justice. There can be no peace.

Cant Stop the Macedonian Signal's picture

@TheOtherMaven

Neurological diseases are the worst. Just the worst.

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"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha

"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver