A while back, I'd written a piece called "
Stir of Echoes: Haunted Hearts and Healing Memories" where I listed a set of music tracks that reminded me of Mumsie, of her life and of my care-giving experience, and of her life with my wife.
A while back, I'd written a piece called "
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.
Via Think Progress,
Last week, ThinkProgress reported that Texas Gov. Rick Perry (R) believes that Medicare and Social Security are unconstitutional. Turns out, he’s not he only one. At a town hall in Tulsa, Oklahoma, Sen. Tom Coburn (R-OK) appeared to embrace Perry’s claim that providing for America’s seniors is unconstitutional:
QUESTION: With more and more cuts in Medicare and Medicaid on the horizon, I’m really worried about protecting our frail elderly in the Medicare and Medicaid facilities. So I would like to know how Congress proposes to balance the budget and still make sure our frail elderly in these facilities are protected and have trained care staff.
COBURN: That’s a great question. The first question I have for you is if you look in the Constitution, where is it the federal government’s role to do that? That’s number one. Number two is the way I was brought up that’s a family responsibility, not a government responsibility.
The video is embedded below.
Think Progress provided a good rebuttal - check it out at their link.
And treat this as an Open Thread.
Note: Please do not front-page this. This is my own opinion, and shouldn't be FP'd as it might set the stage for potentially painting a default perspective of ePM's board and editors. This piece does ~not~ necessarily reflect the stance of ePluribus Media, her board or directors. It's the sole opinion of a jaded cyber-avatar. Thank you. -- GH
We've got a lot to worry about. Not only are the Republicans at war with reality, but we've also got a real-world incarnation of a corrupt religious nut gone politic in the form of Rick Perry, who appears to be the targeted potential presidential candidate that the GOP & its sycophants are hoping will rise to the top of the barrel of rotten choices and give them a clear shot at regaining the absolute power they lost when BushCo went belly-up.
Don't do it, folks. Rick Perry is bad mojo. The GOP & Tea Party have obstructed any and all attempts to fix the mess that the GOP made when it had both Congress & the Presidency. Throw the bums out face-first and stop letting them stab our nation in the back while gutting it from the front.
If you agree with this sentiment, by all means pass it along. Thank you. - GH
Click to enlarge. Attribution: xkcd.1
To quote Henry Jenkins, Director of the Comparative Media Studies Program as well as a full Professor of Literature at MIT, on the topic of media convergence:
We are living in an age when changes in communications, storytelling and information technologies are reshaping almost every aspect of contemporary life -- including how we create, consume, learn, and interact with each other. A whole range of new technologies enable consumers to archive, annotate, appropriate, and recirculate media content and in the process, these technologies have altered the ways that consumers interact with core institutions of government, education, and commerce.
That's a lot of "stuff" all coalescing into new, hopefully synergetic ways of disseminating and assimilating information. We've seen examples of it most recently with regard to the activities of loosely organized anonymous hacking groups as well as with the recent internationally reported riots - the riots in Egypt and London, for example (but by no means the only ones).
Even citizen journalism has taken on new power and meaning as various technologies merge, enabling citizens to report local news and events to the masses like never before.
It's a brave new world of information exchange, security and cyber-warfare - and it's permeating the very fabric of the cultures in many first-world nations.
How do you see this playing out now, in your life? Where do you think it's going to lead us, and what are some of the possible as-yet unforeseen consequences that may arise?
Comments are open - remember, this is an Open Thread.
Only footnote references - and comments - appear over-the-fold.
(Hint: "More of the same" is killing our nation)
The following is my opinion, and is not to be taken as synonymous with or supported by the staff, writers and editors of ePluribus Media. It is my own take on my personal observations. - GreyHawk, August 2011
Over the past decade, the GOP gutted the US infrastructure as well as the social safety net while simultaneously killing revenues from corporations and the "elite" - in addition to starting two wars, the second of which was started based on carefully manufactured lies and which was used to justify multiple constitutional violations as well as the implementation of and reliance upon crimes against humanity. The second war was kept "off books" for the most part, was highly mis-managed and lost TRILLIONS of dollars.
To fix this mess, another stimulus - this time grounded in a strong infrastructure program and new energy policy - is needed along with single-payer health care, Wall Street & banking reform, closing of loopholes and tax revenues from the expiration of the Bush tax cuts.
Getting even 1 of those things will be a miracle with the current Congress.
The US people need to vote out the GOP and Tea Party from all levels of government - local, state & federal (and yank what they can from the judiciary - which is nigh impossible) - in order to foment effective change and positive growth.
Use this as an Open Thread, and add your comments below. Thank you.
The ongoing game of charade in DC is continuing apace, with what appears to be the umpteenth act in a never-ending saga of "kabuki theater in a Potemkin village" over raising the debt ceiling.
The GOP has decided to use this as a tri-blade tool to finish the job of gutting the economy in their efforts to blame the collapse upon the Obama Administration, in spite of the facts & evidence that this whole fiasco began (and accelerated) under the previous Administration with the help of a GOP majority in both houses of Congress.
Unfortunately for them, the video of their efforts to avoid precisely what they're doing now exists - Think Progress posted about it.
Now we just need people to share it widely, and shout down those who are arguing about "compromise" - there needs to be a clean bill, no strings, and not for the short term.
Then the other hypocrisies can be dealt with.
Let's take our nation back and return control of it to the masses.
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.
Many of you may recall that I was the primary care-giver for a victim of Alzheimer's Disease - specifically, my mother-in-law who I affectionately referred to as "Mumsie." I wrote a few pieces that appeared here on ePluribus Media as well as other places, often sharing thoughts / feelings and happenings about the ongoing experience, or reflecting upon it after her passing in December of 2007.
Some of you may recall that I mentioned working with someone to co-author a book about the experience.
Well, the book is complete. It's now available via Amazon.com in both print and Kindle format. It's Her Final Year: A Care-Giving Memoir.
We think that anyone facing prospect of - or currently engaged in - the care-giving role for a loved one suffering from Alzheimer's disease may find the experiences we relate within to be of use and interest. If you know anyone who you think may benefit, please pass along new of our book and the website URL (herfinalyear.com).
Lenovo has introduced three new computer tablets that continue to expand their habit of creating stylish, useful personal technology devices.
The three new tablets are:
What caught my eye about the latest release is the ThinkPad Tablet, which sports a Tablet Keyboard Folio Case and has digital pen support.
It's technology I'd love to get my hands on for a full - and ideally long-term - test drive.
What kind of new technology has sprung up in the marketplace lately that's caught your eye? Comments are open...
In Sunday's Abbreviated Pundit Round-up, Daily Kos editor and front-page contributor Mark Sumner notes via an excerpt from Byron Williams that the problem with our deficit isn't what pundits and politicians are making it out to be - and nobody appears to be listening:
Byron Williams says President Obama isn't standing his ground.
According to the Congressional Budget Office, the bipartisan federal agency that provides economic data to Congress, more than half the current deficit is attributed to the tax cuts during the presidency of George W. Bush and the two wars that were financed on borrowed dollars during the same time period.
It's not health care legislation, it's not TARP, nor is it the stimulus package -- the troika with which most seem obsessed -- it's the tax cuts and wars that many who sit at the table negotiating with the president supported, but have irresponsibly drawn a line in the sand in opposition to any revenue increases.
Republicans sank the economy and ran up the debt, now they're looking to capitalize from their own destruction. Don't let them.
If you're familiar with the title and premise of Naomi Klein's The Shock Doctrine, then you're familiar with how extreme - and dangerous - the current antics of conservatives and the Republican Party in general are to the well-being of our nation.
Contact your local news media (unless, of course, you're stuck with Fox) and demand that they start pointing out the realities behind the current fiscal issues. Recommend that they read Byron's column. Demand that they stop catering to the dialog that the politicians are refusing to correct. We need EVERYONE who can to work with us to force the media and the politicians (the ones who are still listening) to start driving the debate on getting actual issues addressed, instead of permitting the ongoing smoke-and-mirrors that characterizes what has become the typical game of "kabuki theater in a Potemkin village" that our Congress has engaged in.
Our nation, and our people, can't take much more of this idiocy.
From the Overnight News Digest on Daily Kos:
A judge ruled Wednesday that prison officials can forcibly give the Tucson shooting rampage suspect anti-psychotic drugs in a bid to make him mentally fit for trial.
U.S. District Judge Larry Burns' decision came after Jared Lee Loughner's attorneys filed an emergency request last week to prevent any forced medication of their client without approval from a judge. The judge said he did not want to second guess doctor's at the federal prison in Springfield, Mo., who determined that Jared Loughner was a danger.
Defense attorneys said Loughner had been forcibly medicated since June 21.
This ruling can set a dangerous precedent - one that was already avoided in another case which may be familiar to our readers: the story of Susan Lindauer, as told in Symbol Susan - "Thought this be madness..." as well as other pieces, several by guest contributor Michael Collins. In particular, check out Michael Collins: Did Justice Order Forced Psych Medication?. It's an eye-opener.
While I'm certainly no fan of Loughner, and I'd like to see a trial, the history behind forced medication - particularly in light of events tied to the Susan Lindauer prosecution/persectution - raises some troubling questions.
What's your take? Comments are open below the fold.
A 2010 DVD release called Scott Pilgrim vs. The World just came up on my radar this morning: the clip looks suitably insane to actually suggest a pretty fun experience.
If you've seen it, or at least watched the trailer, let us know what you think in the comments below.