One of the purposes that this blog has come to serve over time is to show how acute problems that individuals face are often not theirs alone, but are the result of larger social and economic structures that work against them. Sometimes the damage done to individuals is an accidental byproduct of poorly thought out products or policies. Other times, it looks to be a disturbingly central element of the business model.
We’ve been alerted to an issue that no doubt many readers have had the misfortune to encounter, but our sense is that has yet to be recognized as a broader societal issue, namely, how the medical-industrial complex takes advantage of the elderly. As Lambert put it:
Eldercare is really the limit case of health care for profit. Stick a tube in the helpless body, extract rent. It’s brilliant in its simplicity!
We don’t want to pre-empt the excellent Maggie Mahar, author of the widely acclaimed book Money Driven Medicine, who is about to launch a series of posts on how longevity will become the major medical crisis of the 21st century, with Alzheimer’s and other types of dementia a particularly acute problem. She is starting this coverage with a discussion of Katy Butler’s book: Knocking at Heaven’s Gate. It chronicles what took place after a doctor insisted on outfitting her father, who was cognitively impaired after a catastrophic stroke, with a pace maker. It’s a troubling account of how families are effectively shoved aside in making decisions on behalf of loved ones, even when a medical power of attorney is in place. I strongly suggest you sign up for her e-mail alerts from her Health Beat blog
We had a reader, Mark L, tell us over the last two weeks of his worry and frustration about how his elderly father seemed to be held hostage in a rehabilitation facility. His father had previously been cared for at home by his wife with the assistance of a aide who visited four to five days a week. Mark L admitted he could not be fully certain of all the details, since he was working in Eastern Europe and was getting updates from his increasingly distraught mother. However, Maggie Mahar described an even more clear cut instances of medical “caregiver” overreaching in her correspondence with me, so directionally, Mark L and his mother’s fears seem well warranted. Key sections from one of his e-mails:
My father is 89 years old and was admitted to a hospital a little over a month ago because his care-giver said he was sleeping too much (both at night and during the day) and that was “not normal”. The care-giver contacted a nurse and doctor who thought it would be good to take him to the hospital.
The doctors could find nothing wrong with him. However, they guessed that this might be the effect of medicine he’d been taking for many years. Possibly the cumulative effect was to decrease the activity of his kidneys. This was speculative and it lead only to a brief period when the medicines were not administered.
In the end, the only problem was that he’d lost strength from being in the hospital bed, and sleeping so much without being on his feet. So, he was admitted to a “rehabilitation center” – presumably one owned by the same for-profit entity that owns the hospital.
My mother was told that he would be there for two weeks, to get his strength back. (During the time, he was to be given physical therapy, and regularly walk with the assistance of staff.)Now that two weeks are almost up, my mother has just met with a Social Worker and an Unidentified Hospital Employee — someone who had no name badge, and who did not even have the courtesy to introduce himself.
My mother was informed that Medicare would pay for so many days, and that their Private Insurance would pay for so many days, and that after that, she would have to pay. But the message was that my father will not be going home.
No explanation has been given as to why he must stay longer than two weeks, and the orginal reason for admitting him to this facility has not been referred to again.
Evidently the goal of this is to obtain the maximum amount of money, and indirectly to bankrupt the family.
Note well: The entity where my father is being held is under-staffed. My father has been found wandering around because no one is keeping an eye on him. And, that on several occasions.
Moreover, due to Skype, I was able to hear a conversation between my mother and the care-giver in which she described the situation in the facility. She did not use the word “understaffed” but between her sympathy for those who work there and the words she actually used, it is clear that the problem is an insufficient number of staff. The care-giver was trying to help out in sympathy with those who worked there because she’s worked in such facilities before. She identified with the situation of the employees there, saying words to the effect that you go to one room, check that someone is OK, and then rush to the next room or to a room where there is a problem. In other words, there is not time to give proper attention to any one individual. This is not what my father deserves, nor should it be legal. It is not acceptable. It is plainly a case of housing people in an under-staffed facility.
Most recently, when my mother’s care-giver visited the hospital to spend time with him, she did not find him in his room. Instead, she found him unattended with an oxygen cord dangerously wrapped around his neck in a room down the hall from his room. He was unharmed, but he was in the wrong room, and confused.
This looks to me like a scam – BAIT and SWITCH — aimed at extracting the maximum amount of money for the for-profit entity. Bait: Only two weeks to get his strength back. Switch: Now, that we’ve got him, we won’t let him go; and you will have to pay!
I must emphasize: in this facility, my father is not receiving the care he needs, and he is not happy. He frequently complains that he wants to go home, and he asks for my mother at night. (To deal with his “anxiety” they give him a pill. But if anything, his desire to leave the place is evidence that he remains rational. No sane and healthy person wants to be in such a sterile, lifeless environment, without a familiar face, and only the professional affection of nurses, if one happens to be present.)
When my father was hospitalized in the past, my mother stayed in the hospital with him. Now, they do not allow her to stay at this under-staffed facility. Moreover, my parents have been married for sixty-three years, and this separation, is, in and of itself cruel.
All for the sake of profit. And not because the care-givers or nurses are receiving high salaries or generous pensions.
Note that putting a person who suffers from Alzheimer’s or dementia in strange surroundings is particularly stressful to them. With their memory impaired, the ability to have a daily routine and recognize familiar places gives them a sense of still having some control.
This story does not have a happy resolution. The hospital’s position had been that the father was safe where he was, despite falling repeatedly in his efforts to escape. The mother was able to get the father rescued from the facility only by virtue of having her son’s brother-in-law, an attorney, start attending meetings with hospital staff. However, the hospital/rehabilitation center stay appears to have impaired him. His dementia was markedly worse, likely due to the stress of being deprived of familiar surroundings, most importantly, the presence of his wife.
The potential for victimization is obviously most acute with Alzheimer’s patients, but mere lapses in care, which seems all too common with the elderly, can wind up producing the same results. One of my in-laws sent this story in response to Mark L’s account:
The story Mark shared with you is very close to what happened with my dad. He had knee replacement surgery. He suffered a lot of discomfort and could continue with physical therapy, hoping the pain would go away. The doctors could not help him, but the also didn’t consider any of the factors that would be causing him pain, such as the metal in his body from injuries during battle in Korea contributed to his pain. Because he didn’t recover from the operation he had trouble getting around, he also had an abundance of medications for his heart, diabetes, and pain. This turn him into a recluse and my mom into his nurse and slave.
It finally reach a point where he feel over a table, could not get up and my mom called an ambulance. They brought him to the hospital. After two weeks of trying to figure out what would be the right steps for him medically, including looking at the 20 prescriptions he was taking, they sent him to a nursing home for rehabilitation. The place was so bad that he eventually fell broke and broke his hip. He eventually got pneumonia and went to the hospital. Lucky from there we were able to move him to a Veteran’s Nursing Home (much better home for him) but he never came home, never recovered and slowly wasted away as they tried to keep him breathing and moved him back and forth from the Vet’s nursing home to the Vet’s hospital.
It was horrible, the system is fucked up, and I never want to see this happen again.
Now one can correctly point out that we all die in the end and the process can be painful, demeaning and frightening, particularly if someone has a terminal disease like the less treatable forms of cancer. But the structure of our society and the priorities of our medical system conspire against the elderly. People in most advanced economies live in nuclear families, often finding it hard to make their own way, so the marshaling the time and resources to take care of an aged parent or relative is difficult to impossible. By contrast, historically, extended families lived in the same house or in close proximity, so care of both the young and the aged could be spread among relatives.
It is particularly hard to care well for a failing parent with Alzheimer’s. I saw one woman do it well, but her mother had enough money to pay to rent a home where she and her daughter could both live comfortably and the daughter could hire two aides so the mother had close to 24/7 assistance. There is presumably a better middle ground between the sort of warehousing approach Mark L’s father was subjected to and high touch/high cost care, but that means more expense, and the direction of the medical-industrial complex is to increase top level pay and corporate profits, and not to improve service levels if they can get away with less.
And the elderly themselves often see what is in store for them and take matters into their own hands. My father had an auto-immune disease that was diagnosed as terminal. His father had languished in a nursing home for 12 years, 10 of them blind because he got glaucoma that went untreated. My father shot himself when his condition got bad enough that he might be hospitalized; he was afraid that if he went in, he’d never be allowed to leave. One of my mother’s friends had survived cancer twice, and got lung cancer when in her 80s. She was told she had 6-12 months to live. Her lungs would fill with fluid and she’d have to have a tube inserted to drain her lungs. She killed herself via an overdose of sleeping pills rather than suffer through increasingly painful interventions to keep her alive. Another friend of my mother’s went into the hospital, was discharged to a rehab center too early, where a combination of misdosing and lack of supervision left her sufficiently impaired that she would be unable to live on her own again. She got her kids to remove her from the facility, and she stayed with one of them and refused to eat or take medicine.
This is clearly not a pleasant topic, but it is one we need to face if we are to come up with better approaches. And this situation is unlikely to improve absent more public interest and outcry. We have the immovable object of an aging population that can be kept alive longer, albeit not necessarily with much improvement in quality of life. And on that side, as we’ve seen above, is a medical industry loath to give up an obvious source of profit. On the other is the irresistible force of broad societal pressures to reduce health care spending, particularly on the unproductive elderly. It’s naive to imagine that many of us won’t be subject to the problem that Mark L’s parents face, either directly or indirectly. Yet the public remains complacent even when it is their own well-being that might eventually be at risk.
Update 6:30 AM: I hadn’t heard from Mark L for the last couple of days, and I had hoped that his father would show some improvement when he settled in at home. Mark saw the post and wrote just now:
You should know: my father is doing much better. I spoke with him briefly on Skype yesterday. I could see that he was better, and he was even willing to briefly sing with me an old song (or a snatch of it), “The horse went around with his foot on the ground.”
He did not seem so confused and lonely as he had been only the day before. And, my impression is that his progress also lifted my mother’s spirits, and the spirit
of the woman who helps them regularly.In the interest of telling the complete story, the day before my father was admitted,
an ambulance had been called against my mother’s wishes. (She was afraid that
once he was admitted, they would not release him again to come home.)When the ambulance came, my father (here I rely upon what my mother told me)
told the men that he did not want to go to the hospital. Now, on that day, I did see my father through Skype, and he did look pretty bad.Someone, I believe one of the men who came with the ambulance, told my
mother that if he continued to be so sleepy (I cannot be sure of his exact words)
then she should have him taken to the hospital. And, so on the next day, he
was taken to the hospital.Just before he was released, he actually fell and hit his head. (He must have fallen
three or four times while in their “care”.) And, so they had to send him to a hospital
to have a brain scan. I thought that they might have released him because they
were afraid he would fall again, and then the family would sue him.
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An attorney prepared detailed instructions for end of life. As the result of an accident, he went into a coma. Fast forward, family presents the legal details about his end of life wishes. The medical facility announces he woke up, asked for care, and then relapsed into the coma. He was kept on life support for over a year before finally dying. It was an incredibly painful and stressful time for the attorney’s family members who felt held hostage by the facility.
nanny cams. they’re cheap, discreet. sadly nanny cams have caught elder abuse at facilities…..when caregivers are paid about $11/hr. you sometimes get what you pay for.
No, surveillance of the lowest paid workers is not the key. And, I think the fact nursing homes are chronically understaffed is more the cause of inadquate care than anything else.
You keep an eye on the lowest paid workers, but you hold the owners of the facility to account, not the minimum wage workers. If the facility retaliates against the lowly-paid, you have a much better chance of finding a whistle blower to help your case.
We have experienced nursing staff, including elderly care, as part of our extended family, and plan for end of life care to handled, as far as possible, within the family. If any of our elders interact with the medical system, we try and make sure someone with a medical background is present.
Family-based care is certainly ideal, and rarely requires nursing expertise. Family members can be trained how to perform most required regular medical procedures. Most elderly in the US however don’t have family willing and/or able to take care of them unless they still have a spouse who is alive and able, and can’t afford to hire the necessary in-home help. In NC at least however (not the only state but can’t vouch for which others have a similar policy), Medicaid will pay for 16 hours/day of homecare, as long as it is less than the cost of needed level of institutional care, thus allowing family caregivers to hold outside jobs and get some needed respite.
Having another person present for doctor’s appts and to stay for hospitalizations, medical background preferred but not required (should be assertive though, willing to advocate if necessary), is excellent advice, and not necessarily only for the elderly.
And here’s the ultimate problem; family has atomized due to the work/life/financial changes that have existed in the US since the early days of the 20th century.
Not to mention the focus on short time horizons, selfless use of one’s limited lifespan on things that don’t matter, and the ultimate hatred and disinterest that most people have for their family.
The problems with long term care of the elderly are just beginning, and we have not yet plumbed the depth of the horrors to come.
blunt,
Your post confirms your nom de plume and is very depressing, especially since it has so much truth.
I don’t think hatred towards family or family conflict has probably risen, only disinterest, which isn’t limited to family but generalized towards other people in general. A person’s time, in particular, has become a very expensive commodity. The reasons why I’ll leave to those of higher pay grades (a low bar albeit, as not coincidentally, a family “f***-up” already, having never earned 6 figures, and now on the dole, sigh……..).
The way we care for our elderly who don’t have at least $65K/year to pay for institutional care (and it IS institutional) is abysmal. There are ways to get an elderly person of modest means into a well-run and clean facility, sometimes even a very nice one, but they require research and boots on the ground, as well as knowing some ins and outs I would think. I only know a few manage to do it, but not how.
The vast majority of baby-boomers who need a skilled residential setting will be Medicaid either by the time they enter the facility or not long after. I wouldn’t want anybody I loved to live in most Medicaid facilities I’ve been in. If you’ve never visited one of these, you really should check one out, but be prepared for a depressing experience, and the smell of urine. (OTOH, there are some (high-end) places I’d pack tomorrow to go live in.)
I think I’d rather die in a ditch in the tropics then live in a urine-smelling “home.” Of course, with some effort, those may not be the only two alternatives, and a system that offered a decent end of life would offer a decent middle and beginning too.
“The medical facility announces he woke up, asked for care, and then relapsed into the coma.”
So along with Standard Cop Lies we’re getting Standard Medical Lies. Both for protecting and enhancing a power position.
I was going to type a conversation I overheard at a hospital a few years back, but I changed my mind. It involved a cardiac surgeon wanting to replace stents in an 80 year old’s heart, but because the patient’s kidneys were so “weak”, he had to stay in the hospital for several weeks to “recover” before more surgery.. The poor guy probably never saw the sun the rest of his life.
Well, the hospital “recovered” their costs. And more! So there’s that.
I am an ICU nurse at a major inner city hospital. To provide some balance to this conversation I will offer this……many times when all hope is lost and brain function is wiped out the families will go against the wishes of the patient (even when they have advanced directives!) and against the medical teams recommendations and demand ALL possible interventions. The hospital then follows their DEMANDS out of fear of a lawsuit. I see this scenario play out FAR more often then the scenario in the preceding article. In no way do I wish to diminish the obvious pain and distress the family in the article experienced, but the scenario I spelled out happens on a nightly basis. What happened to this family I have not seen that often, though once would be to often.
We are our own worst enemy.
I wish I had some numbers on how many episodes like this there are and what their characteristics are. Do you know if there are any studies, whether in the professional literature or, say, from the National Nurses Union?
This is a scenario where those damn trial lawyers might be helpful. False imprisonment, who knows what statutory claims, consumer rights violations … if this is in fact systemic, a few well-joined or class claims might change the profit motive.
ahem. The hamstringing of the plaintiff tort system was a critical element of the crapification and economic rape and pillage of America. It was foundational part of the strategy – capture government, capture the press, destroy the unions, destroy the civil system.
Say what you want about these attorneys, but they WERE the only recourse most of us had with the pathological corporate state. And they are being systematically suppressed.
no worries, McMike, at times I am one of those damn trial attorneys. and yes, the systematic campaign against the civil justice system, tort law and otherwise, has been very effective.
aha. sarcasm.
Keep up the good work.
Actually, battery charges can, and have been brought for giving medication or doing a procedure without consent. If a patient wants to leave and is held against his will, that is also illegal and going off-grounds to bring them to a facility involuntarily is kidnapping. This assumes the patient hasn’t been deemed mentally incompetent or has a legal guardian who can make medical decisions, but these require a court process I believe.
I can’t comment on civil recourse but people do still pursue criminal charges successfully. I am an RN, almost 30 years experience in 4 different states though not currently working. My focus of practice was on the seriously mentally ill population, who frequently don’t want treatment, so these were laws I, and the places where I worked, needed to know. In fact, based on my own experience, unless and until a guardian has been legally appointed, the patient can and must provide consent, unless incapacitated, in which case, life-saving measures can be used. I don’t know why Mark’s father wasn’t allowed to leave if he hadn’t been deemed incompetent, and his mother could have refused any hospitalization not covered by insurance. People have ultimate power to refuse treatment, and even make really stupid decisions about their health, to quote a local judge, though I do understand that our elderly grew up in a culture where one didn’t question anything told during encounters with the medical system.
You wrote: ” I don’t know why Mark’s father wasn’t allowed to leave if he hadn’t been deemed incompetent, and his mother could have refused any hospitalization not covered by insurance.”
I do not know why my father’s wishes were ignored. I do not know if he has been officially declared incompetent, but he is senile, and (in practice) my mother often has to make decisions–although I must emphasize she does everything in her power to explain and talk to him. If, then, it was really my mother’s decision, I think she initially believe the Rehabilitation Facility would make him better–physically stronger. However, in the end, it became clear that my father was being harmed. He felt lonely and isolated and just wanted to leave. He was found wandering near the entrance in the middle of the night. He fell numerous times. The last time he fell–just before he was released–he hit his head and had to go to a hospital for a brain scan. Moreover, I did get the picture that the place was under-staffed. (As I said above.)
There is another story about the resistance of the RF that I don’t want to re-hash.
In my opinion, they demonstrated total ignorance and or indifference to the thought that my father’s emotional connection to my mother was as important to the quality of his life as anything else. –And as my mother was not informed that she would be unable to spend the nights in the RF, that is another complaint. In the past, she had always stayed with him in the hospital.
My mother did not receive the message that she has a right to refuse “hospitalization not covered by insurance.” Thank you for pointing that out.When things calm down, I’ll make sure she knows this. Right now, my parents are home together, recovering from the trauma. (And I think they are doing well.)
Incidentally, my siblings and I have made plans to improve my parents’ situation, and to take some of the burden of care off my mother’s shoulders.
“One of the purposes that this blog has come to serve over time is to show how acute problems that individuals face are often not theirs alone, but are the result of larger social and economic structures that work against them.”
“People in most advanced economies live in nuclear families, often finding it hard to make their own way, so the marshaling the time and resources to take care of an aged parent or relative is difficult to impossible. By contrast, historically, extended families lived in the same house or in close proximity, so care of both the young and the aged could be spread among relatives.”
Yup.
I’ve never understood the passion that seniors have nowadays to retire, then sell the house and move to some retirement project/ghetto hundreds of miles away from their families. Aside from that, who wants to live around nothing but other old folks? My wife and I are both in our 60s and couldn’t imagine a more miserable existence. We far prefer the hubbub of the “real” world.
“Aside from that, who wants to live around nothing but other old folks? My wife and I are both in our 60s and couldn’t imagine a more miserable existence.”
Perhaps you answered your question. Maybe some people don’t want to face the fact that to many people they are just “old folks”– not really individuals.
I would not want to live in the sunbelt or in a retirement community, but now there are many stories about older people retiring to college towns, and I have to say that would rank below a retirement community for me.
and I have to say that would rank below a retirement community for me.
—-
Why? I know a couple who did just that and they love it. They are volunteering in schools, helping kids with difficulties learn how to read.
In Quebec, all schools offer after pre and after-care for 7$ a day. Nearly all the workers are retired women.
Don’t you need a village to raise a child?
All the workers are retired women? Are they paid?
I’m not really thrilled with the idea of the increasing use of a voluntary (unpaid) labor force in human service settings.
Universities like to tout the benefits of voluntarism. One reason (among many) I don’t want to live in a college town.
Really? They are vibrant, full of culture, full of young people, bustling with activity….
..subsisting on debt peonage– but good for those who have secure jobs in them…Good for reinforcing our class system.
I just have this idea of the type of person that retires to such a place. I’m picturing someone that gets all their news from NPR and thinks Paul Krugman represents the height of liberal thinking.
That may or may not be true, but solely in the context of choosing places to live, you could do worse than many university towns. In many states, they are islands of vibrancy in otherwise decaying post-industrial, post bubble, or heavily toxified landscapes.
If it is the bland libero-centrism you object to, I am sure there are suitable extreme conservative or even a few vestigial liberal outposts. Or, within the university towns, you have at least the opportunity to seek out like minded enclaves, which are likely to be concentrated there.
I don’t subscribe to Richard Florida style theories of vibrancy. Why are they “islands of vibrancy”? Maybe because extracting money from the government and from debtors is the only game left in town.
Maybe universities created the class that told us we have nothing to fear from deindustrialization — there will be room for us all in the new economy one of these days.
Maybe. But relative to many other options, they’re often pretty nice places to spend your sunset years.
PS. No place is immune to your test. Rural America is one giant hellhole of federal subsidy, agrigiant and walmart colonization, military bases, and extractive and industrial pollution. Suburbs are, well, ask JH Kunstler about suburbs. Cities are host to the privaitization and wall street scams run amok. And full of icky people on welfare.
Yes, I know that and I don’t have a test. (I’ll assume your saying icky welfare people sarcastically or that you are talking about the privatizers.)
I’m not sure how we got into the thread. I actually think we agree more than appears. Just talking past each other.
Yeah, Florida, the inventor of 2008’s “creative class.” Put down your coffee.
I think you are arguing for choosing where to retire based on philosophical and global ethical considerations, which is fine, but it remains that i happen to really enjoy university towns at face value, and can think of worse places to hang out.
“Really? They are vibrant, full of culture, full of young people, bustling with activity….”
Or stated differently chock a block full of the next batch of sheep to be sheared.
What a world we humans have in the aggregate created !
When you are young it is sheep rearing time and when old hook up to tubes and let the kaching machine ring. The time in between is spent procreating so the continuum can go on unimpeded? What a set up.
Should make us pause and think what this human life lark is all about.
Actually that was in one of the richest neighborhoods in Montreal. Most of the these women were retired or stay at home wives whose husbands had good jobs. They are paid minimum wage and often serve in their community school. My kids ended up with extra grandmas!!!
Frankly, I kind of approve when the wealthy or those with guaranteed pensions give back for free to society. Especially services desired by the less well to do. I’m not too crazy about charity based on the rich deciding what the less well to do need.
Why not create jobs for those that need them?
So only the poor should work and serve the rich?
I have to say that I do have a love and hate relationship with volunteer work.
Here in Ontario, students today need to earn volunteer credits to get their diplomas. As a parent, I actually have to get a police check before volunteering in my child’s school.
Volunteer work and fundraising in public schools actually contribute to increasing the wedge between poor area schools and schools in rich zones.
So volunteer work is starting to generate a class system. On the other hand, volunteer can help create community and does serve a good purpose when the activity would never be funded by the private side.
Volunteering would work with guaranteed income :) I mean what’s to hate people voluntarily (and sometimes truly voluntarily unlike wage labor) trying to help each other (well there may be a bit of one-up if only one is helping). However in a world where we all chase money to survive, it’s “volunteers are taking our jobs!”
Yes, volunteer work in health care or education has historically come from the unpaid labor of women. (And expect the “demands” for that unpaid labor to escalate as the population ages; the family members who care for the elderly are usually women (though not always I know, so MRAs: no need to get your boxers in a twist.) A friend of mine was able to devote many hours volunteering in her son’s school and she did it for good reasons, because the school had no art curriculum and she could provide that teaching. Everyone was thankful, and then one of the teachers, in an aside to her said: You know, you’re just enabling more spending cuts, enabling the wealthy to get away with paying less support to public schools. And that teacher was right.
Amen, sister.
Not disagreeing with the assessment, but it is useful to remember that the opposite of community supported by volunteers is one where everything is delegated to a professionals. And of course then everything is monetized, and regulated.
So try and keep an eye on balance.
Working for some third party employer in exchange for money is vastly overrated. Many people would rather pursue work, hobbies and leisure that interest them rather than do work that makes profits for a group of shareholders and enables out-sized compensation to the financial managers operating the business. Some of my best life experiences were “volunteering” because I was doing “work” that interested me and provided psychic income far greater than any monetary payout.
Since modern society has mostly solved, and continues to solve, production issues by using more technology and better management practices, the main economic issue of our time (and since the 1960’s really) is solving the distribution of the world’s goods and services in a fairer manner. Discontinuing an economic system that relies on high levels of debt, high housing costs and high taxes on labor will solve many of the distributional issues. Reduced work-weeks and job-sharing will solve most of the rest. This leaves each of us with the most important issue we all face – how do we choose to spend our limited time while on earth?
Agreed. Thanks for saying this.
Some things are worth doing, because they don’t pay. And couldn’t.
Although the pendulum has swung too far, and we are being forced to work for our own robbery, it remains true that schools are better places when active, engaged parents help out because they want to. Things done for love (and simple duty) cannot be bought with money – only imitations.
My school built a playground using a volunteer model: grants for the materials, volunteer labor for the work. Now then, we surely cost some local laborers some work (in fact, being 2010, much of the labor was out of work tradesmen with kids in the school) , but the event itself was a wonderful community experience, source of pride and accomplishment.
Yes, I can agree with this. We need the support in place to make these things possible.
I am not a fan of the administrative state, but I am even less of a partisan of the use of unpaid labor for tasks that people previously earned a living from.
A guaranteed annual income would, I imagine, solve the “unpaid labor of women” problem. One reason to think about it.
Agreed. The best thing we could do for everyone is to provide an adequate baseline, this would remove all sorts of obstacles, perverse incentives, and shackles, and would free people to do what they truly desire to do, or what truly needs to be done, etc.
Take the need for money as the dominant decision driver out of the equation, and see what happens.
Agreed! And volunteers do some of the very BEST work while resentful wage slaves do some of the worst.
But that’s circumstantial evidence, justice REQUIRES restitution whatever use people may then use their time for.
Yes!
guaranteed income, a job guarantee for all those who want to work, or de-privatize the commons (ie make much common property again – reducing the NEED for wage labor for basic necessities).
Depends on your lifestyle. My Mom is in her 70’s and she can’t wait to sell the house (she’s waiting for the dog to pass so she has more options for living accommodations, pets are always a challenge.)
She wants a community with people of similar age with lots of social activities, she doesn’t want to put up with the noise of small children and wants housing designed for aging (handrails, step-in-tubs, no stairs, etc..)
First, they may not have close relationships with their kids, or their kids may not live nearby. Second, they may not want to be a “burden”. Third, their social networks will be thinning out due to death and/or moving away of their friends (some of whom move to be closer to their families). Fourth, as you get older, maintaining a house gets harder. Rather than downsize to a smaller house, it might seem more attractive to move into “independent living” which is basically an apartment with more services (cleaning of your unit once a week, certain number of meals, plus organized activities). Fifth, if you live in a high cost state like NY, unless you are rich, it behooves you to move when you get old to preserve your savings.
Sixth, and here is the biggie: there are hardly any decent nursing homes. Most have huge waiting lists. The only way you get in is by being in independent living, which is where the operator makes money. The profitable independent living subsidizes the unprofitable assisted living and nursing home operations. And there are even fewer places that have attractive independent living along with good care in the more intensive care settings.
Seventh, it clearly has not occurred to you, but some of these places are great, a lot like going back to college. There’s one near Rye that a friend checked out on behalf of her mother and she said we’d all move in if we had the time and money. There’s another right next to Davidson (which calls itself the Harvard of the South) which has a lot of activities plus all the residents can attend classes at Davidson for free.
So it would behoove you not to judge on a topic when you admit you don’t understand the basics.
I have relatives at The Pines in Davidson, NC, and am happy to report that they love it. Admittedly it is for those with upper middle class incomes and assets only.
However, personally, I miss Jack Kevorkian.
I’ll behoove all I want to on the topic. And I think I understand the basics as well as you do. My wife and I are in our 60s and know people from 2 to 90, and know many seniors who couldn’t conceive of moving to a retirement home in the sunbelt for the “basics” that I stated.
Some do, some don’t.
To each her own, some folks love sun city, but no need to belittle me about not understanding the “basics”.
It’s not really relevant to my story, but…… my father actually never chose to retire. He was forced to retire early on account of a serious car accident. The great tragedy was that he actually liked his job.
My comment may have gotten out of sequence. Someone above had said they don’t understand the itch to retire, etc. (Apologies for any unclarity, it’s late here and I”ve had a long day.)
People in a certain age bracket have embraced a “live rich, die poor” philosophy. They are estranged from their children, see any money they have earned as theirs to consume, and have abdicated control over their lives to the state.
The elderly who have this mindset, those not protected by their family or foresighted enough to transfer their wealth, property, and philosophy to their descendants, are the next to be farmed for cash and discarded like downer cattle.
Ever wonder why Victorian-era aristocracy managed to survive so long? Even to this day, yes. They had more children, and they were connected to these children in a very different way. They passed down money, property, and patterns of thought that made the family and the inheritance the prime directive of their lives. They handed down more than they received, with good fortune, and their place was always with the family.
The aristocracy is coming back, and that return will be on the backs of elderly americans.
I was lucky in life with my parents’ final days. They were divorced and both had Alzheimers, and my dad also had kidney failure and was on dialysis. My dad was able to come live with us and his new grandson for two years until he passed away. He had enough SS to pay for a part time sitter and my wife’s and my job had odd enough hours that we were able to get him to dialysis, and so on. He was able to die in bed at home at age 78.
Eight years later, pretty much the same story with my mom coming to live with us, though she spent her final week in ccu due to a heart attack. Three weeks before she died, I got to drive her 700 miles back to her old hometown for her sister’s funeral where she got to see all her relatives and all the old places one last time.
That’s one stage of my life where I feel truly blessed.
My father, a boomer, comes from a family of 7 kids. My mother, 6. Their parents have had plenty of support. To top it off, they all live close enough to help. That’s a benefit of Quebec’s French Canadian culture where the kids don’t becomes nomads like the Anglos who tend to follow the money.
Now imagine Gen-X and Gen-Y with 0 or 1 sibling… and the fact that society is expecting them to be even more productive. Not going to happen just because of logistics that we have not planned for… the cult of youth prevented us from investing properly in the ageing of society.
Over the last 3 decades, we should have been investing in proper eldercare but instead we build more houses, bought more cars and increased infra that will need to be maintained. We even invested in surgeries that fooled us into thinking we can stay young forever. The cult of youth is coming back to haunt us.
Over the next few years, I am expecting to get brainwashed subliminally with the message that age is beautiful.
I expect between the debt load jobless youth carry without job prospects, and the time/money load of caring for seniors, we are going to return to the dense extended family model of households by necessity.
The spread out everyone-has-their-own-McMansion model was a historical aberration, along with much of the other middle class bubble attributes.
That’s what I expect. But I would not be surprised if the distribution is patchy… some McMansion neighborhoods might do well with many homes housing large families while other neighborhoods with large homes deteriorate.
Or it might even differ by street. I believe there are big changes coming but I don’t think we can predict how it will all pan out.
Oh it will be spotty alright.
Many McMansion neighborhoods have occupancy and vehicle limits, and they prohibit home chicken keeping and expansive vegetable gardens etc. Although these rules will fade as necessity dictates.
It will in fact lead to a very interesting major mixing/resorting of economic and demographic relationships. Impossible to predict I would think, except in some general sense.
Thanks for putting the chicken and gardening pieces together because I never thought of the issue that way; I think you are absolutely right. My friend with the tomatoes also keeps chickens, and the physical work of the garden, besides the sheer pleasure of it, is a very healthy thing for him. (It’s the opposite of the truth to say that we “vegetate” in front of the TV; vegetables don’t sit around!) And the garden, insofar as it helps him achieve a level of self-reliance, is a hedge against cuts and collapse. I wonder if there are any studies on this? Might help convince my town council that keeping chickens isn’t the scourge they seem to think it is!
Our local community governments are struggling with it right now. Along with goat keeping.
But the most onerous rules in fact actually come from HOAs. And their covenants usually require a 2/3 vote of all residents to modify.
I bet they require lawns, too, because property values.
Avert!
Yup.
Colorado had to pass some laws making it okay to post political signs during campaign season, and to air dry laundry in the sun.
I believe they also made xeriscaping a protected activity – which makes sense in a drought state. I am not sure though, this bill may have been defeated.
My struggling inner ring suburb, built in the early 20th century, has far-sightedly allowed chicken-keeping (hens only, no roosters!).
Here’s the rub: you need a permit, and it costs $80.00 a year — man, that kind of dough can buy a lot of eggs!
Some will change zoning laws and others will fight against chickens until thy come home to roost. LOL!
Nothing in our society is so broken as the health care system–at least when it comes to the elderly. As someone who spent several years helping to care for a bedridden parent I can report that all of the above seems completely familiar. Because we kept my mother out of a nursing facility–and only because in my opinion–she lived to be 92.
The many laws and licensing requirements–that exist as much to protect doctor and big pharma income as to protect the public–are a large part of the problem. When a physician’s time is worth so many dollars per hour they won’t be bothered to see patients at home but instead have them hauled to their office in ambulances. This prejudice for bureacratic requirements continues with nursing homes, which are places of hopelessness. I’ve seen more than my share.
One can argue whether capitalism can be fixed, but the zeal to fit health care into this profit centered model is irrational. It’s the ultimate case of “bad incentives.”
My father was also held hostage at a rehab facility after he broke his ankle. He came down with an e-coli infection while he was there. My brother had to forcibly extract him.
How did your brother spring him?
What I don’t understand, clearly out of my own ignorance of the subject, is how these people can forcibly keep these elderly patients on site. How do they get away with telling families they can’t pick up their relations?
In the case of my husband’s aunt (in Ky), when we tried to “extract” her, and get her transferred (in our car) to another place 70 miles away, the executive staff threatened to report us to Adult Protective Services, and bring charges! They said the facility we were considering wasn’t run by proper staff (pot calling kettle black in my estimation), and they called the owner (possibly an RN, but I can’t remember) up and threatened to bring charges of lack of qualification to provide care, causing the owner to back out of the agreement of transfer with us. Then we got his aunt a placement in another facility, and after a rant by my husband, they finally let her go. The whole episode was an eye-opener for us, needless to say.
I am currently acting as a caretaker for my parents, both of them in their late 50s, both of them fighting very serious and difficult-to-treat forms of cancer (pancreatic in my mother’s case, a constellation of tumours in and around the ribcage in my father’s).
As my spelling of ‘tumours’ may have demonstrated, we are Canadians. Furthermore, as a former public employee (a paramedic, to be precise), my father has a very generous pension with an excellent benefits package. The combination of social medicine and good insurance has kept our expenses down to a tiny fraction of the treatments’ true costs. I am able to provide full-time care for them both, without having the burden of having to earn my own living on top of my responsibilities at home. (In order to keep my skills and my sanity, I also volunteer some of my time at a nearby organic vegetable farm, with ambitions to eventually take up sustainable agriculture as a new career).
If we as a family had been forced to shoulder the full cost of their treatments ourselves, the odds are good that my mom & dad would have been subjected to the stress and humiliation of bankruptcy ages ago, if not forced to discontinue treatment altogether. At the very least, I would have been forced to get a full-time job – a difficult prospect, considering we live in Peterborough, Ontario, which has the miserable distinction of being the city with Canada’s highest unemployment rate. Without that level of public support, an already immensely difficult phase of their lives would have been utterly intolerable.
I recognize how lucky we are to live in a place and a situation that allows me to be there for them. I also recognize the irony in the fact that, if the economy had been any kinder to me personally, I would not have been unemployed when their cancers were diagnosed and available to move in and help them fight this terrible disease. In this case, the economic generation-gap worked in our family’s favour. They are able to provide the capital to support my labour on their behalf, a job that will only become more difficult as time goes on. I don’t even want to imagine what might have been if things had been different, and our family forced to bear the full brunt of the medical system’s vicious assaults on the wallets and the dignity of the dying.
My father is 83 and has stage 4 prostate cancer due to Agent Orange exposure; since he’s retired military, he’s covered by both Medicare and Tricare. When he was getting chemo, his oncologist told him to take Aleve if he experienced pain at the infusion site; unfortunately the Aleve didn’t mix well with the Plavix he was on (I believe its fairly common knowledge that NSAIDS should not be taken by anyone on blood-thinners — actually I think I even heard that on a TV commercial. I guess the oncologist doesn’t watch TV.)
Due to a GI bleed, he ended up spending a week in ICU needing 6 pints of blood replaced and then another week on the medical floor. By the time the hospital was ready to discharge him, he was too weak for my mother to care for him alone. I’m the only family member at all available to help, and while I’d traveled there during his hospital stay, I live and work 1200 miles away. I thought my mother needed a home health aide — my father was well enough that he didn’t need care per se, just help maneuvering from bed to bathroom etc as he gained strength, something he was working on doing on his own even his hospital bed. But Medicare won’t pay for home health care without an intervening stay in a rehab facility (what a nice regulation for the SNF industry) — so that’s where he went. My mother and I researched as best we could the available facilities, and chose one that had scored well, however these things are scored — it’s very difficult to get any real info at all; I had more health info about my neighborhood restaurants than I ever could find about the SNFs in my parents’ town. Not that info would make much difference, because the choice is pretty limited and cudgel large: you want home health care, you have to do this first.
In the time he stayed there, his mood deteriorated drastically; he’d been optimistic in the hospital as his strength improved; he felt imprisoned in the rehab facility and he complained bitterly about the food (he’d actually enjoyed the hospital food — so he’s not exactly picky.) Worse, he contracted c-diff while he was there.
Researching c-diff, I realized how dangerous it had been to transfer a man whose immune system was compromised (as a result of chemo) to any facility filled with sick people. He had been steadily recovering strength after the Aleve/Plavix blood loss and the chemo had drastically slowed the cancer. But now the chemo had to be stopped due to the c-diff, which caused near constant diarrhea. Over the course of a year and a half he deteriorated drastically; he rapidly lost something like 40 pounds; this all put it strain on his heart and kidneys. But now he at least qualified for home health care, thank god, because now he really truly needed it. I will say that the nurse who came several times a week to check on him helped a great deal, partly just by being herself a caring, optimistic presence and partly by relieving my mother’s anxiety about managing my father’s care, medications, diet etc. alone.
We are lucky so far. A fecal transplant several months ago seems to have finally rid him of the c-diff, and the difference in him is night-and-day. He laughs, he’s visiting the library and his friends again, he’s eating well, he’s got his resistance bands and is back to working out. He’s now on chemo via a pill and the cancer advances but very slowly. My mother is giddy with happiness to have her husband back, even as she knows there’s a clock ticking. They’ve been married 60 years, during which time they endured a lot of separation while my father served in the military. Now they want only to be together as much as they can.
We have resolved, no more SNFs, no matter what. I’ve told my mother that when the need arises again, we should look into finding a health care worker who’d work privately for cash under the table rather than to go to a facility or hire through an agency.
I think of this, though, when I read about how much money is spent in the last six months of life. The problem is, people don’t have calendars on their bellies. When I saw my father in the ICU, I thought he’d die within a week, he looked that bad. When he came home from the rehab facility, I thought it’d be a matter of a months before his heart gave out. And yet here he is, after enormous effort on his part (strength training at 83), alive and enjoying life.
So far, none of this has cost them a dime, thanks to the combined Tricare and Medicare coverage. I look out at the horizon, though, and know neither my husband nor I will have that kind of coverage or receive that kind of care.
And honestly, since we’re both late baby-boomers, given the inter-generational warfare already being stoked, I fully expect that by the time the earlier boomers have aged and passed on, the younger generations will be putting our age cohort onto ice floes.
There is a lovely alternative here in San Francisco: the Zen Hospice Center, which opened up in the 80s during the AIDS crisis to give the dying a place of compassionate death. Of course, you have to know you’re dying, as opposed to being merely old.
Sorry about your parents and I’m sure they are grateful for your care. However, I take issue with:
The “generational warfare” you speak of is being stoked by the idea that generations have agency. In fact, the moral of the post is that the rentiers are the common enemy of both young and old, Pete Peterson’s propaganda to the contrary.
” the younger generations will be putting our age cohort onto ice floes.”
Additionally, with global warming there may not be enough ice floes to go around for all your cohorts. =).
The intergenerational warfare will be more of a financial issue than a compassion one. There are always people who care if your eyes are open and you keep your mind open.
We don’t need to enable our enemies by accepting their terms.
Needless to say my wife is going through the EXACT same thing. The courts are involved. As an bystander watching this play out before my eyes I am truly disgusted by some humans.
The health care proxy was simply cast aside and taken over by complete strangers (non-profit social service “conservator”). Now they are trying to steal the prime real estate.
It is an endless stream of perjury and fraud.
What really gets me is when ever the subject comes up with other people they have their own identical tale of woe.
The elderly are being strip mined by any leach that cab get away with it.
“Stripmining our elders.” Not a bad headline.
I wish I had the time to post the entire story. It’s been the slippery slope for a few years. My mother-in-law has mild dementia and a poor education. I have watched the women defrauded and coerced for almost 20 years. The local non-profit social services is moving in for the coup de gras after they pretty much pissed away more than 100K cash as conservator. This is despite her having a income exceeding expenses by a few hundred $’s per month. The family courts have a nice racket going on with the local hospitals. There is a reason they try and seal everything and it sure isn’t privacy concerns.
This has happened locally to 5 people I have met in my area.
They all had to get lawyers and spend 10’s of thousands individually to save the family estate.
Strip mining is certainly the most appropriate term.
“This has happened locally to 5 people I have met in my area.” I’d love to have a nationwide number…
yup strip mining
or attempting to. the system tried to do the same to my (ex) wifes mother.
I had decided to adjust our lifestyle to allow caring for her parents. She was
the only surviving child and they had her after 40. I walked away from computer security direction (thankfully as I would have probably been working on a top floor of WTC on that fateful day) and just focused on real estate rehabbing which gave us flexibility to watch her parents with minimal supervision of outsiders. Went with a well known social organization who had a bunch of recovering addicts as the caregivers, and within 45 days they were helping the parents to take extra doses of pain killers and share some with them. then the organization claimed that the parents had handed over the entire set of assets one day when they were visiting. An audit of their financials quickly convinced their comptroller that there was an obvious error in the paperwork they had received, they “must” have had some material errors in them and they just tore up the paperwork ( note, any non profit is open to anyone reviewing their last three years of financials at any time – IRS rule).
Then there was the bank sales man selling them a low paying annuity with no survivor benefits (i am sure the commission on an $ 800k transaction was probably not something that confused him) and it took a conversation with their Community Reinvestment Act officer to convince them the money they would make was not going to be worth the interesting set of anomalies I found in their lending programs (banks hate people who understand the CRA), and suddenly they too noticed an error in the paperwork and recinded it as the three day right of refusal was “obviously” not presented to the parents (their version of why it was smart to walk away)..
but then we get to the rehab center after a hospital stay where my mother in law had picked something up in the emergency room. The hospital fought to “peg” her as she was, shall we say, difficult…mind you this was a tough person who would call the hospital at three am to get a ride to the emergency room on a twice a month schedule and would make sure that she called her daughter to make sure she dropped everything as “this could be the big one”…
it was not easy…but when they pegged her, instead of the agreement to send her to a specialized unit on roosevelt island to ween her off the respiratoras they had agreed as part of the deal to allow the peg (I had learned to operate a certain type of respirator so that she could be home if the process had not worked), instead they decided that new york law allowed them to over ride the health care proxy once she was pegged (we knew they were angling for this and that is why we had resisted for 6 weeks).
as the fates would have it, the ex was working for a major HMO and we knew the dirty little secret of the medical field. They bill before they explain (at least back in 2001-2002)
CPT and ICD codes…one is created from the purported notes of the doctor the other is the billing code for said procedure (before going further, to save the AMA any efforts in asking for a take down of an unauthorized use , these letters are trademarked)
so, when we insisted on signing her out against doctors and hospitals recommendation, they tried to argue that the procedures were not covered by her medical coverage and that we just had to pay them $750,000 and we could have her…or we could let them “fix” their billing and the insurance coverage would be coordinated…as long as she was handed over to their permanent rehab and nursing home facility. They had just opened it up in Brooklyn so they had quite a few open beds that needed to be filled.
so, I just reminded them that they were a non profit institution and asked for their last three years of financials…oh, and since they got federal funding for that new facility, I was certainly going to now have the time to review it for any issues (as a concerned citizen…) that they may have missed since in New York City there are such wonderful contractors with such nice names who never convert funds for their own uses or over bill…
but I asked them for just the procedure codes for the last five days of these hundreds of thousand of dollars of billings that I suggested they were making up. When that was a problem, I asked for all the procedure codes, offering to help correct the billing problems with my in laws insurance…then their legal department decided to sit in on the meetings…and we all did the reservoir dogs gun scene…you bankrupt our family, I bankrupt your institution…except in their case, some of them might end up vacationing at klub fed. They had a few unkind words, etc…this being brooklyn, a few future threats were made against me…but they blinked and released her to us.
she was a stubborn old goat and within days she was breathing off the machine most of the time, but her heart had grown too large from the time at the hospital and she was told to rest. She felt great and thought they were nuts. She passed away less than a week after she had been released from the hospital.
the marriage did not last much after I helped stabilized her situation with her father when we moved down to Florida. There are those who say she used me…but it was the right thing to do. The divorce was ugly even with no kids, but life takes its interesting turns.
I ended up doing legal support work in fighting foreclosures…and I promised David Stern and his assistant, Sheryl Sammons, that he would be disbarred before I lost my home to foreclosure. He is disbarred…and I am still fighting the banks, 8 years later…
fight for your loved ones…and don’t give in without a fight…
I wouldn’t change anything, except how the system tries to rape the elderly.
This is truly disturbing. How we care for our youngest,oldest, and ill in this country is really disgrace of epic proportions, given the immense access to resources. It seems the NTC (neoliberal thought collective) is conducting social darwinian experiments on the weakest among us. If this does not ring of the slide into fascism, I am not sure what does.
Reminds me of Eduardo Galeano – “People must die, so that, markets may be free”
SeniorCare Industrial Complex: we’ll take care of your parents.
Me: how much will it cost?
SIC: how much do you have?
PS. The big “tell” was the expansion of medicaid clawback. That was the sound of the jaws of the economic trap being sprung shut.
Gee, I thought I remembered some vague rumblings the Dems were going to fix that, because it’s — gosh — wrong to force people to sign away their estates below 133% of the poverty line, and not those above the line, who aren’t subject to the same theft, and have access to the many fine plans that the ObamaCare Marketplace offers. (I crack myself up sometimes.)
“PS. The big “tell” was the expansion of medicaid clawback. That was the sound of the jaws of the economic trap being sprung shut.”
Thank you. This is worth an entire post, if not a book. And not to mention a revolution.
This is another industry that has boomed because of subsidization. Just like the epidemic levels of fraud and cost escalation with higher education, the government trying to do the right thing creates incentives for parasites to take advantage of the system.
The number of older people who suddenly become “poor” so that they can pass their money and house on to their kids while the taxpayer foots the bill for their care is so large that a whole legal specialty has built up around it. As a general guide, when there’s a legal specialty sub-field, you can sure there is significant amounts of fraud involved.
It’s overt. The continuum of care facilities come out and tell you that you’ll be in building/service level A while you have money, then move to building/service level B once you run out and go onto medicare.
Building B would be the one with the dumpsters out back?
No dumpsters; a conveyer belt to the cattle feed processing plant.
Actually, they don’t want you to die, they want you to live as long as possible, while generating lots of billable time. The industry is oriented around extracting reimbursables from medicare/medicaid.
My understanding of the processes is anecdotal, but my understanding is that getting the people into building B is actually the goal for people who aren’t rich but aren’t poor either.
No, Building B would BE the dumpsters out back….
Oh, rats. No concierge!
wrong again…the rats ARE the concierge.
Maybe I should say that the rats are the ones behind the whole scam, but why disparage actual rats who surely have much more honor than that.
I think you meant medicaid. Medicare is for short term/rehab (with three day qualifying stay in the hospital). Nursing homes like medicare patients because they make so much more money off of them– higher rate of reimbursement. There was a real expansion of medicare (short term stay) beds in nursing homes when they realized how much more money they could make off of them– as long as the patient wasn’t too complex. Hip replacements with no complications are favored. They engage in creaming the easiest patients. Now they have too many beds to fill so they can’t be as choosy and they make sure people stay for all their medicare days whether they need it or not. If they have private insurance too, all the better.
Medicaid reimbursements for long term care are truth be told, not that great. Non profit nursing homes are generally better for long term care, but that has more to do with the fact that they have a much higher percentage of private pay guests– not really because they are non profit.
In addition there has been a building spree of assisted living facilities. I personally believe they have been built on the erroneous assumption that older adults will have an estate to help pay for care. Maybe that was true in the past, but it won’t be true in the future.One dream of mine would be for the government to spend money to help people retrofit their homes with universal design principals (definitely not with voluntary labor!).
There is a growing field of “aging in place” consultancy – a value add for remodeling contractors.
But it won’t work widely without a major change in the home health care/nursing affordability.
Perhaps we’ll see an uptick in co-ops, which is an idea I like. i.e. Four seniors and their families create a group home situation, and share the cost of care. Kind of a fractional ownership deal. It’s not clear to me how they vote someone off the island though.
One major obstacle is many seniors don’t want to think about it; don’t want to talk about it. Until it is too late. The nice thing about the continuum of care places (the cruise ship you never get off of), is you pay in once when you are still mobile/lucid and then (theoretically not in practice) don;t have to think about it again. At least that’s the sales pitch.
you write:
” It’s a troubling account of how families are effectively shoved aside in making decisions on behalf of loved ones, even when a medical power of attorney is in place.”
Been there. Both parents had expressed definite end of life care wishes many times over many years. Both had durable power of attorney documents. With each, when the final catastrophy came, the hospitals gave scant attention to the power of attorney docs. It took a united front by all siblings to see to it that final wishes were honored. Fortunately, one sibling is an attorney and one is a research scientist. So when the doctors and hospital staff tried to make sketchy legal claims or razzle-dazzle scientific/medical claims we could effectively push back. (unknown doctor/specialist would show up in the hospital room late at night and use scare tactics to try to convince one parent she needed to schedule an invasive test in their specialty for the next morning – this in the same 24 hrs the primary doctor had insisted no invasive procedures were to be done for at least a week. We vetoed these tests and checked her out at her request. The primary doctor said she’d probably be safer at home.) We were able to have our parents’ health care wishes honored. It was an awful fight and shouldn’t be this hard to insure a loved one’s care wishes are honored.
Excellent article, Yves. I hope everyone has the health care conversation many times with their loved ones before a crisis. That leaves less room for the medical industry to prey on families’ doubts and fears.
“Scare tactics” sounds so harsh. How about “upselling”?
Even with legal and well documented DNR orders in place the family can end up in a fight with the system, whether it is an individual within that system or the Management of that system.
My father passed away a few years ago. He had a documented DNR but ended up on full life support in the ICU at a local hospital for a couple of days prior to dying. The attending physician tol myself and my sister on Day One that even though there was a DNR in place he did not have to legally honor it (I don’t know if this is true or not). Then he tried some serious emotional blackmail when we protested his stance…. things like “Don’t you believe in Jesus and understand that only Jesus can make this decision, not you or your father?” (logically very unsound) and the clincher, “It sounds to me like you want your father to dead.” At that point I told him the conversation was over.
If he had been resuscitated the odds were near 100% that he would have been on at least one machine for a good long time. The doctor in question was well aware of this fact.
He (my father) had been a physician at that hospital for many years. On the third day, the head nurse of the ICU came into the family room and told me it looked like it was over and brought me into my father’s room. He died about 20 minutes later. The nurse then walked over to the PA system and called “Code Blue” saving all of us, particularly my father who understood the system all too well, a lot of needless grief.
There are still a lot of good people in “the system” but in our case the only reason that things went relatively well under the circumstances was due to the fact that we had strong connections within the local system itself. I can’t imagine what the various nightmares are like for those without.
I can vouch for this one. Last summer, my dad went to a local hospital for a severe case of cellulitis. I had been taking him in to this hospital’s wound unit fro weekly treatment, but dad is a cantankerous old fart and wouldn’t heed the doctor’s instructions, until the cellulitis advanced to the point where it was necessary for hospitalization.
Dad was 88 at the time, and diagnosed with a congestive heart condition. Let’s face it, there was much to be done. But he was live bait: Dad not only has Medicare, but supplemental insurance through AARP. The hospital proceeded to keep him in the ICU for a week (“We’re waiting on beds” and I naively believed it for awhile), then a few days on a regular floor, followed by a long stint in the transitional care unit.
A month came and went, and during that time the hospital staff and physicians did their best to keep my sister and me in the dark, despite holding a Healthcare POA. Knowing that this particular hospital was under federal investigation for Medicare fraud, I finally blew my stack and threatened dad’s case manager with turning over his files to the HHS Inspector General’s office. He was subsequently released so quickly they almost threw him out on the street before my sister arrived to bring him home.
Funny thing is, not only did the threat get him released, the hospital inexplicably wrote off all his personal charges (legitimate as they were, relative to the length of stay) save for $65.
It pays to have a little background knowledge in one’s back pocket. But the whole episode brought to sharp focus just how pathetic the U.S. healthcare system has become.
Correction: “there WASN’T much to be done.”
“The American Medical Association says the humane way is to let people starve and thirst to death. If you did that to an animal, you’d be put in jail immediately … In the face of such insanity masquerading as authority, who wouldn’t be strident?” Kevorkian
49 days ago my sister and i got my father to his primary physician…after 4 two week hospital stays we were burnt out. my sister and i wanted confirmation ‘this is it’…we got it. the doc checked dads heart and said he had 3 hours to 3 days to live…he also said he’d have Hospice meet us home where dad wished to die. dad came around when we pulled into the driveway…the Hospice RN diagnosed a TIA (small stroke that can leave no physical indications). the RN was full of info that my sister and i could hardly follow…we were trying to register 3hrs to 3 days after fighting 4 major hospitals since Jan 31. dad got back into his eating routine but needed help to the bathroom etc. this went on for sometime…a CNA began to show up daily. what a godsend…she taught us a lot but hindsight never prepared us for every turn.
we got lucky! hospice is in a MESS. in Georgia, all LPN’s have less than a year to become RN’s…LPN’s are out for good. CNA’s are being hit with fees never seen before…licenses not included. 3 weeks ago i sat the kitchen table with a retired RN (returned for economic reasons) while he begged and worked every part of the system to get dads morphine refilled. he returned the next day to tell me the hospice program only had 2 doctors that covered the entire north georgia to the alabama line and that morning they fired one of them…the other one was on vacation. the morphine wasn’t working as dad had rectal cancer, 3 known valve blockages and a large spot on his right lung…he needed some vicadone etc. the RN found it…i was to ask no questions. then the fun really began…the RN handed in his resignation and they refused it…he called us every other day but the CNA was not allowed to speak to us, only wash & shave him…nothing about ‘signs’ to look for or water/food nothing.
11 days i watched my father die w/o food or water…he was semi conscious because one night he begged me to end it all and not let him watch me labor every 3 hrs. at this point my sister couldn’t take it…she hung out a friends. i don’t blame her…i guess the 3hr hard labor kept me from following dad. Emory Donate Program wanted dads body…dad was proud of that dang green card…showed to everyone for years. so i knew i couldn’t do anything ‘humane’. 24hrs before he passed he hit a surge of energy…its mainly in the breathing from the abdomen…sounds like a peculator ready to blow up. i chose not to drown it out with music or the dumbbox…don’t ask why…im still filtering the whole thing.
last saturday night at 8:17 he took 2 breaths…leaned his shoulders toward me (i was brushing his hair) and released it all…calm as a newborn before its first breath.
RN showed up to pronounce him dead…Emory showed up for his body and nothing.
Dad didn’t want a funeral or any of that other stuff.
every member of the medical field gave me an ear full of the chaos…the horror.
the poor CNA was just hanging onto her 16yrs of service for dear life…she called me the other day to tell me i was in the wrong field…i had what it took to take people to the end.
yeah right. i know better than to say never again…im back at mom’s and she’s 80 in obesity 3 area…it won’t be pretty. but as for me…noway nohow will i allow friend or foe to go thru that for me.
im 52 and feel like all thats ahead of me is death…the economy is crushing my skill base and im having issues thinking outside the box…guess death does that when your not trained in it.
so that’s my boots on the ground deal…we squeaked thru but i got a strong gut feelin it won’t be the same with my mother. her constitution is strong (and too mean to die…so many say/wasn’t me’)
good luck out there and thanks for the comments that helped me face the task with courage and some sense of honoring what my dad thought were his wishes.
if i may…dad and i shared a love of classical & other assorted music…my favorite look from dad was the day i turned him on to this version…a look of pure horror melting into bliss an a wink. Thanks for Every Thing Dad
http://www.youtube.com/watch?v=pd2emzFAqv8
(pardon my rambling and poor writing…im still looking for my land legs)
I’m sorry, man.
That’s a rough time abynormal.
Keep telling your story. The truth will eventually get through.
abynormal — I am so very sorry. Thank you for having the courage to share the story of your father’s death. You have touched many people by doing so.
+100.
Heart felt Thank You Francis, Ernesto and Carla
you know of all the music and speakers ive blown from rock n blues…only one time have the police had to come to our door with a warning:
http://www.youtube.com/watch?v=gbzXLWNYAO0
dad called them commoners and shut the door :-/
i appreciate Yves allowing me to do this…the grieving is slithering in now. logically, i thought every step i walked with my father thru his last journey… i would gently adapt to the finality. im sure i will as the heaving subsides. Thanks Again.
and always, the Lambert
Similar stories happen with autistic and developmentally disabled children and young adults, in a slightly different way.
The state is tight fisted about paying for in-home care from a family member at a few thousand dollars a month (for a profoundly disabled child or young adult who needs 24/7 monitoring). Families who cannot manage without outside funding assistance must send their children to a care facility. These facilities cost $15-20k/month, for which the state foots the bill.
It would be less expensive and better for the child to stay with the parents, but the care corporations don’t want that.
Excellent point, generalizing. This is the market state in action, isn’t it?
No, actually, this is the oligarchic state with a captured and controlled government that is just beginning the process self-cannibalism.
Not a market state at all, though it’s billed as such.
I think there are features that distinguish the system we are caught up in, such that it’s useful to name it. Cannot elaborate, must run.
In The Matrix, the computers harvest bioelectricity from incapacitated humans.
In our world corporations harvest money from incapacitated humans.
I have nothing to add to the major topic, of medical “care” extraction of the wealthier elderly.
I did, however, want to say that the battle of elder care is why I withdrew from this website.
at the holidays & break time from Uni, I visited my grandmother (and only parent, truthfully) who has been on a steady decline since she broke her hip last year. after that, she spent 2 weeks in a “care” facility where she said they gave her food poisoning and a kidney infection, left her all night in a room with another patient who screamed constantly, and from which she could not escape fast enough.
I went home to find that the two family members caring for her were beyond frustrated, and had begun to psychologically abuse her. After spending 3 weeks there, I realized that my grandmother was experiencing a mental decline that did not seem normal, and that instead of the family caregivers addressing potential Alzheimer’s/dementia (I now believe it to be the later stages of Logopenic Aphasia, and that we just did not recognize for the last 15 that my grandmother had this), they allowed her to run her own affairs by actively shaping her choices, resist any offers of assistance from the state, and basically subsist in diaper-rash hell with a son as daily caregiver who was suffering from his own physical disability and addiction to painkillers. Every morning, the ritual was that he yelled at her for 30 minutes because she had incontinence. Every week, it seems the other family member (an aunt, whom I despise, so let that bias be known) yelled at her that she would “leave her alone to rot” if my grandmother kept resisting the doctor’s orders. My grandmother is confused, barely speaking even when given the time and space to reflect, and said privately to both me and my mother that one morning, after being yelled at by her son, “something in (my) mind just snapped, and I didn’t want to talk after that.”
I couldn’t in good conscience leave her there, yet she refuses to go to any facility due to the nightmare rumours that circulate about such places shown to be true in this post. Her two caregivers were refusing all assistance from any other family members, even those able and willing, and my grandmother was refusing all help from Social Services. by my reckoning, she should not have been left in charge of her own affairs considering her mental state, and yet the son needs her assistance to pay rent in the extremely expensive Bay Area, and thus no one wants any interference from outside.
Thankfully, I got my mother involved, but this issue has caused a rift in the family and endless criticism from family members claiming that -I- wanted to “control” my grandmother’s life, when all I really wanted was enough people to realize that the way she was living was driving her to the grave faster than any physical/mental malady she was suffering from. Nevertheless, I have been somewhat “banned” and wonder if a visit to assist my mother over the summer will be feasible, since their intention is to bar me from the house.
My poor grandmother is not getting the medical extraction listed, and perhaps that is best for her, but what she is getting ain’t good. I must say that this is eye-opening, and that EVERYONE needs to get their legal affairs in order, come the day that some emergency makes them unable to direct their own affairs properly.
Good for you. Sadly, as this thread also shows, getting your legal affairs in order isn’t always enough.
When things don’t make a great deal of sense, like our health care system [and particularly, how it deals with end-of-life issues], then one must consider that possibility that basic assumptions are false.
This is exactly the case in a society where most people refuse to accept the only thing they know to be true, the finite nature of human life.
Extending life beyond its natural limits has the same consequences as attempting to bring future income forward [debt]…imbalance leading to dys-function.
i had a older roommate from Istanbul, back in the 80’s. he use to lhao at us americans and our ‘antiques’…he said he and his friends would roam their backyards and come up with items 1000’s yrs old. his went on to point out…”you americans are very very young…like young teens that will never die.”
you have a strong point Impermanence…one that is bullet train speeding right at us.
“Maturity, one discovers, has everything to do with the acceptance of ‘not knowing.”
Mark Z. Danielewski, House of Leaves
So many of these stories describe horrific and inhumane behavior. Do we have any sense of how many such stories, in the aggregate, there are? One place to begin might be the number of DNRs or POAs over-ridden by administrators. OTOH, I have been extremely lucky in that both my parents successfully avoided theses processes (instantly effective strokes) and so I may be wrong about what to look for the measure.
You will need to overcome the “hero” bias that subconsciously pedestalizes the medical profession to get reasonable data, or pull back the curtain in the elder care industry. Since it’s private (conveniently enough), it’s going to be tough to get good data. That bias will affect decision making significantly, such that often times people will simply accept medical directives without realizing that they have choice and the ability to control events.
The instances when I’ve had to make medical decisions were tough; I was only able to stick to the ones I had decided upon because of prior research and people I trusted that I could ask for advice without situational bias.
I’d say that any sample you took the actual number of elders that had been stripmined would be an order of magnitude greater due to this bias. If people had the capability and will to question the medical establishment, we would have either already had a revolution or the sickcare industry would never have reached this point.
“but even the compassion of the wicked is cruel” seems to sum up our medical system.
Thank God for death since that means escape from this nutty world or rather the nuts in charge.
“My mother was informed that Medicare would pay for so many days, and that their Private Insurance would pay for so many days, and that after that, she would have to pay. But the message was that my father will not be going home.”
If the elderly inmate runs out of resources to pay for the continuing “care,” further payment comes from the inmate’s estate (house, bank account, etc.). When the estate is finally exhausted, which makes the inmate officially indigent, he/she qualifies for Medicaid. At this point, the inmate is unlikely to survive much longer. Most people don’t know that Medicare does not pay for custodial nursing home “care.” Once on Medicaid, the quality of care is likely to decline considerably.
I cannot say I knew all the details, so thank you for saying that. However, my mother certainly is aware of the general problem, and I am too. That is, in fact, why her “consultation” with an unidentified employee of the Rehabilitation Facility and a Social Worker upset her so much. (And, by the way, have I missed something? Or is this a case where the Social Worker was taking the side of Capital/Finance? ) In a post above, a nurse responded to my story by pointing out that one has the right to refuse care not covered by insurance. That might be a way to avoid the slippery slope.
The reward for a lifetime of work is to have your suffering turned into a profit center. More of the same, in other words. See the connection?
Cheap and quite effective food-based interventions that can dramatically improve quality of life and cognitive status for everybody, especially older folk, exist. Fish oil is one of them.
I spoke to a friend yesterday who lives in FL Villages She extols the comfort of living in a bubble environment..This thought conjures up a sci-fi existence. ..Scarry??
Very scary. The old should be treasures of wisdom, examples to the next generation, and a help – in the best way that they can be – to their own families by sharing their time with the youngest and providing – now and then – some highly personal and loving child care. But these folks don’t want to do so… that’s work for them. “I’ve raised a family. That’s your problem now.” They prefer to live a second childhood in isolation, hitting golf balls across the green… until they can no longer manage independent living. Leisure and self-indulgence as the highest value…
i hesitate to add these thoughts, knowing that I will not be able to communicate them in a way that will be clear, and also that they will set me up for criticism.
let me place some caveats–
i am in favor of anyone who chooses (consciously, rationally…not in a mentally afflicted state or pressurized) to end their own life, for whatever reason. if one’s life is not their sole possession, what is?
i am in favor of those who would choose to end their lives rather than suffer from a terminal illness, being tortured by medical practitioners and having their own and their family’s finances eaten away until nothing is left.
what i hesitate about is the impression formed from the last few paragraphs of this post. i would very much resist any pressure, even unstated, that those who have reached the end need to “get it over with” and relieve everyone of the burden of caring for them.
this is exactly what i saw in my grandmother’s case—her body was not dying fast enough, yet had become a significant burden for her caregivers, who were largely able to mostly leave her alone (cook for her, essentially) before. so, they started to mistreat her in the hopes that she would become demoralized and give up living. no one should be rushed off the stage in that way. to end one’s life should be a decision that is totally unpressured, especially as a way to end the torture that others are inflicting upon you. as someone who has had suicidal tendencies in the past due to family mistreatment, it truly misery to feel that those around you would likely prefer that you not exist, or at least are willing to make you suffer enough that you truly desire to cease existing.
i would really, really hate for our society to become one in which we tell people who have something terminal, or are going to decay slowly into old age “it would be better (for you, and for us) if you would just end it all.” especially with the rationale that they are “eating up resources” for a futile cause because their death is inevitable, and their present quality of life is negligible. granted, if it comes to feeding starving children over prolonging someone’s life for a few days, i can see the argument and it would be a very difficult choice in favor of the young with their lives before them. but, until we are in that space, it doesn’t seem right to try to induce a mentality that suicide (quickly and deliberately, or slowly and through misery and “giving up”) is the solution. it is unmerciful.
that is all i will say about that.
#1 (Older patient – me)
Patient: I do not want to have a CAT scan with all that radiation, is it absolutely necessary?
Doctor: It needs to be done so that I can see the problem better before I do the procedure.
Patient: Well, okay. (Has CAT done)
Doctor: Well, the CAT was no good, but I don’t really need it.
#2
Patient: The calcium regime that you gave me seems to be working for my bones. My back doesn’t hurt any more.
Doctor: Well, it’s the best regime possible for your condition. But I would like to give you another bone scan, to see how well it’s working.
Patient: If this is the best regime there is and it’s working, then what is the point of doing another bone scan? Am I a guinea pig?
After talking with many other older people, I get the feeling that we are looked at to be run through as many tests as possible, whether needed or not, in order to bring in income. In other words, as walking check books.
Reading this has brought back 14 years of frustration! How many personally owned Adult Foster Care Homes are left? Currently All of my residents are from “Nursing Homes, Rehabilitation Facilities, or Assisted Living Complexes. All of them are here because we are able to give personalized care and they never are left unattended. Residents that withered away in “Rehabilitation Facilities” have learned to walk here. The few I have were lucky enough to have money left over to afford to be here. I am wondering still after all these years – “Why are these places allowed to charge these outrageous prices – Why are the elderly – after they exhausted their resources – shipped to Nursing Homes, which in most cases are within the same “Corporation”. Why are we small care homes not receiving adequate funding to keep in business? I surely can’t be the last dinosaur left in this country!