According to Business Insider, in 2017, the United States was the 13th richest country on earth. There is really no reason that people should DIE because they lack the money to seek medical care. Shane Patrick Boyle started a GoFundMe to raise money to buy insulin. He came up $50 short and died. HE DIED. A young man I know got 'road rash' on his leg. He could not afford to go to the doctor. He died from infection. HE DIED. There is no excuse for this.
With the Republicans in power, over 3,000,000 people have already lost their medical insurance. Whether it is 'Obamacare', 'Medicaid' or 'Medicare', the Republican congress and the Republican Administration are going after it. They don't even have any qualms about it.
Originally posted to Her Final Year on August 24, 2011 by John
Reprinted with permission, with a few small adjustments.
Alzheimer's Disease isn't fickle. It doesn't target just one demographic: it doesn't care how well you're doing financially, or if you're popular, or what color you paint your toe nails or if you're hairy or hairless. Anyone may find themselves either a victim or a potential care-giver.1
Three months ago, Summitt, 59, the blaze-eyed, clench-fisted University of Tennessee women’s basketball coach who has won more games than any other college coach ever, men’s or women’s, visited the Mayo Clinic in Rochester, Minn. seeking an explanation for a troubling series of memory lapses over the past year. A woman who was always highly organized had to ask repeatedly what time a team meeting was scheduled for. "She lost her keys three times a day instead of once," her son Tyler says. She was late to practice. On occasion, she simply stayed in bed.
There are tests which help doctors determine the type - and stage - of dementia. For some folks, these tests make sense. For others, they may be misleading. Such was the case with Summitt, according to her son. Per the WaPo piece:
Next, she was asked, “Do you know today’s date?” She has never known the date. She deals with dates strictly on a need to know basis. Frequently, she doesn’t even known the name of her hotel — there have been so many of them, and they all look the same, and they are all called Radisson or Clarion or Hyatt or Hilton.
This has always been Summitt. She has always mislaid her car keys and forgotten where she put her cellphone. She has always juggled too many responsibilities, and obligations. For this reason, the numbers from her test results are somewhat misleading, according to her son.
When I was the primary care-giver for my mother-in-law, I also noted that the tests (sometimes as simple as asking someone if they remembered a person's name only a few minutes after being introduced) were not fool-proof:3
Part and parcel with spending more time with Georgia by her on the occasional consulting appointment and running errands with her was that we established a better understanding of each other. One of the perks of this was helping her cope with her memory and mental lapses. I encouraged Georgia with clues and triggers to help her remember things like names. The neurologist's name -- "Dr. Penny" -- was one example. I placed a penny in Georgia's hand while we waited for him, after the second time she asked me his name. A minute or so later, I asked her the doctor's name. She looked at the penny in her hand and smiled. "Dr. Penny," she replied with a grin. When he entered, she didn't need to look at her hand. In fact, I think she'd pocketed the penny by that point. But she did remember his name.
This was one of those doubled-edged sword things. The blade cuts both ways -- my helpful "hint" to Georgia to help her alleviate the stress of not remembering the doctor's name and help her feel more at ease likely factored into the doctor's evaluation, as from his perspective Georgia was able to recall his name w/o assistance.
I didn't really think of that at the time.
Continuation of this thought... Folks suffering from dementia, particularly in the early stages, do a lot to try and compensate as well as hide their affliction. Caregivers, in spite of the best of intentions, may be enabling a form of denial in some ways -- that was the thought I was trying to articulate above, wondering if my assistance to Georgia to help her with the doctor's name was just one way of potentially helping her hide her symptoms, even though it was also a positive reinforcement of my role / relationship with her as caregiver/protector/assistant etc.
Sometimes, in our efforts to be helpful, we may thwart some of the simpler yet rudimentary tests that doctors use to establish the parameters necessary for a diagnosis.
It's one of the additionally frustrating things about finding oneself in a care-giving role: can your efforts to help the loved one also impact - possibly negatively - the ability of doctors to develop an accurate medical picture in order to make a proper diagnosis?
A crucial factor that goes hand-in-hand with this is the issue of communication. Not just between doctors and care-givers, but also doctors and patients, patients and care-givers, and all of the preceding in various combinations as they need to communicate with family, friends, legal assistance and social workers or state & federal employees.
Crossposted from Daily Kos.
As many of you know, Shadan7 and I co-authored a book called Her Final Year: A Care-Giving Memoir along with our wives. It contained many excerpts and elements of the care-giving process as we'd related it here in addition to a great deal more information taken from various & sundry other sources (emails to family, online LiveJournal posts, other blog posts and personal journal entries). After writing the book, we then had to figure out how to get it to market: the traditional way (find an agent or publisher via query letter) or the "new" traditional way (self-publishing, utilizing some form of e-book and/or POD publisher). Here's a brief overview of what we have done to date, the decision process involved and our current status.
In addition, we've also got a way for those of you who'd like to get a free copy of the book to take a shot at winning a copy for yourself and a friend.
Follow me over the squiggly thing for more information.
Crossposted from the Daily Kos group CareGiving Kos.
As the population grows, the economy constricts and services face more serious challenges by the day, some of the options currently available to care-givers may change - some will fade as funding dollars for service programs dwindle, while other opportunities may arise to fill voids or address particularly troublesome unmet needs.1 It's often difficult to keep abreast of developments - navigating the state and federal options is usually a good starting point, but state options vary from state to state and region to region. Federal options aren't always easy to understand, or are limited.
One way we can improve this is to offer feedback and information about opportunities for help and support in our region, and provide feedback on those services and how they worked (or not) for our own care-giving needs. In some instances, we might note services and options that we weren't aware of but which are available - and anyone who has actually tried those services can offer their perspectives on them.
This particular diary is not meant to be a substantive start to that process, but an exploratory one: I'll touch on a couple of programs of national and state/regional scope, provide some information and commentary, and ask for any feedback or additional information. Ideally, folks will add other elements in comments (local/regional/state/federal services, etc.) and include what they know of them, and we'll be able to create a more substantive plan for a follow-up diary (or diaries). Ready?
Ok - jump the squiggle, and let's begin.
On Thursday, June 3, the U.S. Department of Agriculture unveiled its new symbol of balanced nutrition, called MyPlate. It replaced the outdated Food Pyramid that has been with us in one form or another since 1992. From a column by William Neuman, published on the New York Times website on May 27 - before the official unveiling - we can get an idea of some of the reasoning behind the new imagery:
It consists of four colored sections, for fruits, vegetables, grains and protein, according to several people who have been briefed on the change. Beside the plate is a smaller circle for dairy, suggesting a glass of low-fat milk or perhaps a yogurt cup.
Few nutritionists will mourn the passing of the pyramid, which, while instantly recognized by millions of American school kids, parents and consumers, was derided by nutritionists as too confusing and deeply flawed because it did not distinguish clearly between healthy foods like whole grains and fish and less healthy choices like white bread and bacon.
In a piece by Dallas Duncan of The Gainesville Times entitled Clean dinner plate replaces food pyramid: Experts weigh in on government's new dietary guidelines, published a day following the official unveiling, we learn a few more things about MyPlate:
The image advises people to eat smaller portions, reduce sodium intake, drink water and low-fat or fat-free milk and increase intake of fruits, vegetables and whole grains.
"This is a lot more user-friendly," Hall County Schools Nutrition Coordinator Jennifer Teems said. "It's easy for kids to look at and say, ‘This is what should be on my plate.'"
Teems said the only thing she would change on MyPlate was to feature pictures of food.
"It is not perfect of course, because it doesn't handle mixed foods, but it is better than the pyramid," Crawley said. "I wish it gave a size for the plate. Most dinner plates are huge now and may result in overeating."
Everyone's tastes are different, so the new image may or may not be palatable to some, but most appear to agree that it's a definite improvement over the Food Pyramid...and, in particular, the most recent incarnation of the pyramid, which was called MyPyramid.
You can go check out the new symbol and nutrition guidelines at ChooseMyPlate.gov.
Just a quick note: according to a piece by Stephen C. Webster on Raw Replay, Timothy Ray Brown may be the first patient in history to be cured of AIDS.
There's a video at the link, from the May 17th broadcast of CBS San Francisco.
The cure was apparently effected through a bone marrow transplant from a donor who was genetically immune to HIV - a rare trait.
Doctors aren't sure how the bone marrow transplant itself triggered the body's elimination of the virus proper.
This is an excellent reality-based video by a young Romanian videographer named Christina Rad. Hat-tip to Moby over in the Opinions Unrestrained forum at DelphiForums for posting where I'd find it, and to Stephen at DelphiForums for his initial post on it.
From Moby's post:
Cristina Rad is a young Romanian woman who has independently read the Bible, the Koran and other books on religion. As a result, she became an agnostic, then took the final step to atheism. She's been releasing some pretty intelligent videos discussing various related subjects for about three years. She's got a sense of humor and has fun with her filming and editing skills, sometimes playing multiple characters, dancing, etc.
Thanks to Stephen over at Here Is the News for posting about her.
We need more people to wake up and see through the Right's bullsh!t. Watching more of Christina Rad would be a helpful way to start...as well as a very entertaining and educational one.
Watch and learn...and pass it on:
Cool, eh? -- Yeah, I think so too. Totally Rad, in fact. ;)
This isn't a commentary or diary so much as a kind of long comment that I thought contained a reference worth bringing to the attention of others. From a recent Daily Kos diary,1 the following:
University of Michigan: Study shows real social costs of caring for cognitively impaired elders
March 22, 2011
ANN ARBOR, Mich.—The real social costs of cognitive impairments among the elderly are being greatly underestimated without counting care given to older Americans who have not yet reached the diagnostic threshold for dementia.
That is the central finding of a University of Michigan study published in the current issue of the Journal of the American Geriatrics Society. The study is based on data from 169 primary family caregivers of individuals with dementia or cognitive impairment. The sample is part of the Aging, Demographics and Memory study, which examined a nationally representative sample of men and women age 70 and older as a supplement to the U-M Health and Retirement Study, funded primarily by the National Institute on Aging.
"We were surprised to learn how much time family members spend caring for loved ones who have some cognitive impairment, but whose impairments are not severe enough to be classified as dementia," said Gwenith Fisher, a psychologist at the U-M Institute for Social Research (ISR). "These caregivers are dealing with many of the burdens of caring for an older, cognitively impaired family member, but they may not be eligible for much of the help available unless the diagnosis is dementia."
Having lived through this,2 it's good to see that studies are now focusing on the overall costs. The takeaway line that caught my attention?
"These caregivers are dealing with many of the burdens of caring for an older, cognitively impaired family member, but they may not be eligible for much of the help available unless the diagnosis is dementia."
Yes. "Unless" and "Until" - and sometimes even afterward.
The costs of caring can be significant - but, that's part and parcel of what it really means to care, isn't it?3
I don't regret it.
Footnote references over the fold.
It's now official. My co-author Shadan7 and I, along with our wives, have decided to self-publish our book about our experiences caring for our respective mothers-in-law as they slowly succumbed to Alzheimer's Disease.
The book's title is Her Final Year. Why that title? Because it fits - in several ways. Particularly if you regard the "year" as a metaphor. I'll excerpt from the link above, as Shadan7's explanation for the metaphor sums it up nicely:
The idea for the book – the metaphor, if you will – is that you can consider Alzheimer's progression and impact on a life as something of a whole. Just as the seasons progress, just as the days and weeks and months follow one after another in a fairly seamless manner through the course of a year, so does the disease advance. January starts with hope for a new year, in December you're looking back at how things actually unfolded. You can predict, in general terms, what the weather will be like from month to month – but you can still have a glorious sunny day the week of Christmas, just as you can have a grim and cold weekend in September.
Likewise, someone suffering from dementia can have good days and bad days, even as the general trend of the disease moves relentlessly on to a known conclusion. Furthermore, in no two people will the disease progress in exactly the same way.
Therefore, in order to make our book the most useful to other people, we've arranged the "months" according to the general progression of the disease, and then we've placed individual entries – drawn from email correspondence, blog posts and Live Journal entries – into the "month" where it most seems to fit. There is a general tendency for those entries to follow an actual chronological progression, but it happens that sometimes they don't match up that way. In addition, things are time-compressed: the actual experiences we’re relating happened over roughly four years, but in order to make the most sense of them they've been fit into this one-year framework.
Hence, Her Final Year. Incidentally, the last third or so of the book is a whole other section titled His First Year, dealing with the impact of the caregiving and subsequent recovery from it.
So it would seem.
The other day in an open thread I commented on "the intended public option that should be Sustinet in Connecticut," and it would seem that is to be the case if the Sustinet Health Partnership Board of Directors get their way according to the report they handed in to the Connecticut General Assembly. Jon Walker has the key report paragraphs at FDL and summerizes it all too well, as anyone that has followed Healthcare reform closely would be aware of these realities:
A friend recently asked why stupidity wasn't fatal -- he was bemoaning the idiocy of anti-environmental groups at the time. While my friend is well aware of just how dangerous and deadly stupidity could be, I took the opportunity to respond anyway in case the occasional lurker was in the vicinity.
The result was a simply little blurb that I thought I'd post here, too. Enjoy! -- GH
>> Why isn't stupidity fatal? <<
For the most part, the list is kept relatively free of Urban Legends -- winners must be verifiable, capable of making intelligent decisions and no innocent bystanders can be endangered. More available at the Wikipedia page.
From the Wikipedia page,
The Darwin Awards: A Chronicle of Enterprising Demises is a tongue-in-cheek honor named after evolutionary theorist Charles Darwin. Awards have been given for people who "do a service to Humanity by removing themselves from the gene pool" (i.e., lose the ability to reproduce either by death or sterilization in an idiotic fashion). According to Wendy Northcutt, author of the Darwin Award books: "The Awards honor people who ensure the long-term survival of the human race by removing themselves from the gene pool in a sublimely idiotic fashion." The Darwin Award books state that an attempt is made to disallow known urban legends from the awards, but some older "winners" have been 'grandfathered' to keep their awards. The Darwin Awards site does try to verify all submitted stories, but many similar sites, and the vast number of circulating "Darwin awards" emails, are largely fictional.
So, in summation, stupidity can be fatal, and plays a role in the ongoing evolution of the species through contributions to the "survival of the fittest" aspect of evolutionary development. Winners of the Award successfully remove themselves -- one way or another -- from the gene pool, effectively cleansing of it the blatantly stupid.
Unfortunately for us, there's an unforeseen parallel evolutionary track that nobody ever seems to mention: among the stupid, ~the stronger stupid~ survives, and lives to continue to taint the gene pool. That, of course, explains that stubborn, stupid 30% of unevolved cretins who continue to undermine the nation and make a mockery of reality-based thinking. It also appears to explain modern-day Republican leadership's endemic hypocrisy.
Ah, Darwin -- you inglorious bastard. See what you've gotten us into now...?