I Have This Terminal Disease,
It Moves So Slow It Is Killing Me!
One of 25 Best Alzheimer’s Blogs of 2012
Mike Donohue is a brave man. Courageous, direct, and bold, his blog energizes readers with a passion for action. Dementia Endured gives a hint in the title as to the nature of this talented writer: he will endure. And with a personality like Mike’s, it’s easy to believe that he shall overcome, as well!
His life experiences are opened to the reader, and his journey recovering from alcoholism to adjusting to Alzheimer’s holds its own fascination for visitors to his site. Mike’s strength and determination will remind readers that dementias are one area in which it’s best not to hold any punches.
Wednesday, September 30, 2009
I read the papers this morning and was dismayed! PUBLIC OPTION LOSES IN FINANCE COMMITTEE (Senator Baucus Committee) FIRST BY FOUR VOTES, THAN A SECOND ROUND BY 2 VOTES. This brought my demeanor down no end! Then I read the commentary on the Huffington Report that renewed my hope just a little bit. Could this be possible or wishful folderol posted in a liberal website?
It at least made me feel better.
Read it: Growing Momentum for Public Option click on the hypertext to get you there.
Why is this important? Because: Hope for something better is always good. Is there yet some compassion possible in the political process? Or is it all bought and paid for by the moneyed bunch?
Why am I on this soap box seemingly crying into the wind? My wife and I will make it one way or the other. But my God! We have a responsibility to the generations that follow to correct the mistakes of our most recent past. We are a commonwealth. This means we have a Common Purpose, a Common Good. It doesn’t mean Common Profits for the Fittest. We as a Compact of Government hold all that comprises Life, Liberty and the Pursuit of Happiness for the benefit of each other.
Having Alzheimer’s Disease (AD) underscores the urgency of this issue. The pain and burden of it complicated by the cost of it are incredible.
Tuesday, September 29, 2009
Three articles in the New York Times captured my attention this morning. One from 2004, one from 2006, and one that ran in February of this year. They are as follows:
1. Alzheimer's in the Living Room: How One Family Rallies to Cope
2. Elder-Care Costs Deplete Savings of a Generation
3. Nursing Homes for the Rest of Us
I have posted all three on my Archive. Click on their Hypertext to go to the Archive and read them.
Why do these three older articles grab my attention now?
• Health Care Reform!
• The problems of families affected by AD have been around for some time and just will not go away. They will get worse for the affected families and for the Nation at Large, considering the escalation of Cost of Care certain to occur soon!
• The articles read together blend in underscoring the paradox we individually and collectively face!
• The solution will not be found if Health Care Reform, at risk now, goes down the tube as it could. Long Term Care relief will then not even get off the ground!
I was at a dinner party last night. Three otherwise liberals, two of whom voted for Obama, were of the opinion: “Much as it is needed, with the current deficit and the current state of the economy, we simply cannot afford to do it now.”
I was appalled and so stated, not with out a good measure of angst. WE CAN’T AFFORD TO NOT DO IT! “Where the hell were you people when we got into and stayed in the war the funding of which has been wasteful and confiscatory” I asked? Where the hell where you when you let the tax cuts for the rich get passed with hardly a whimper? Where the hell have you been the last 30 years when Reagan and company threw financial regulation to the wind and the predators came in and developed the groundwork for the BubbleBust of ’08?
We left the barn door open while the Gilded Ones of our society spent the rest of us blind. We said little. Apparently we are in the same posture now.
What is wrong with the three of the opinion “We can’t afford in now. We need to wait until we can?” One of the three objectors is a high income entrepreneur who acknowledges he works hard for what he has and doesn’t care to spend more in taxes. The other two are both retired. One is well fixed but at a low tax rate. The other like too many of us lives under the pale of his savings running out ahead of him and his wife running out.
Looking at these issues through the lens of reality today, I simply do not understand it. To add the cost of Health Care Reform to the current cost of servicing the intolerable deficit will make little difference at all.
There are ways and means to pay for it starting with non-renewal of the tax cuts of the last administration if it is needed.
The savings that accrue from stemming the accelerating Cost of Care provided by the top heavy, broken system of delivery and funding of Health Care now in existence will offset the additional costs we are paying now and that escalate exponentially with each succeeding year. We need to put our finger in this cataclysmic hole in the dike of economic reason.
How can we yield to the Gilded Ones who have so profited for 30 years and particularly the last 8 years and let their rapid fire sound bytes of objection keep their financial wherewithal in play?
Looking at these issues through the prism of one affected by and afflicted with AD today, my needs and those of my family fester as a sore on the outlook of the future.
If it was but us it would be one thing about which we might exercise patience. With the prospect of our needs impoverishing my wife should she live during and beyond my institutionalization because everything was spent down for my care, my feelings build in agitation and concern?
When I look beyond our perplexing circumstances, see the Community Cost in the long run desperation sets in. Why can we not as a community exercise compassion for one another?
The first article posted is a rendition of what is faced by the family home-caring one with AD. The second article posted speaks of how the Cost of Care Depletes savings. The third article is the one that makes my a little squirrelly. This is for three reasons:
1. Home care costs the most of all.
2. A nursing home set up to serve us in the same status as that of our homes is 11, 14,000 a month. The mean of that is: 150,000 a year, a little more than the average of 84,000 a year. How long can the average retirement savings withstand that, year after year, while the spouse continues with substantially the same living expense as the two or you had?
3. The standard cost nursing home is appalling enough. Worse that that the quality of so many of them is dreadful to intolerable. I have discussed this in two posts, the first on this Blog entitled: HEALTH CARE, A SERVICE OR AN INDUSTRY?, the second posted in my Archive: WHAT’S WRONG WITH THIS PICTURE? Click on either which are in hypertext to read.
I have an innate sense of fairness which borders on a core value. On the positive side of this I find it difficult to play the game of setting up irrevocable trusts, other forms of sheltered assets, Divorcing and trying to transfer as much assets to my wife and what few other solutions that there are to protect the retirement saving of my wife. If my wife is yet living when I reach my time for the “home” I have difficulty just crassly spending it down and have her impoverished in the process. Therefore between costing us out of my Home Care my only other choice is to pick the cheapest home I can find.
It galls me to think I can go into the Cadillac Home, spend it down quickly, and then go on the County as suggested in the third article. If my wife is not living when the time comes that is a different story. Until her needs are secured during and after me, I must look to frugality in my care.
If we could divorce, shelter everything, give it all to the kids and hope for the best, or some other way of shelter, we can’t. We simply cannot beat the system and Dodge’em. We are forced to play by the rules. Doing so nonetheless violates my sense of fair play.
Monday, September 28, 2009
Yesterday I wrote about the Conservative Agenda creating the impasse to Health Care Reform that started in Morning in America. Today I read a comment of a respected columnist Deepak Chopra suggesting another reason, us!
Read by clicking on: Fix-It President Hits a Wall
What is it that we have become, Knee Jerk, mindless, reactionary dupes? Or, a deeply conflicted Body Politic troubled by the nuances of Health Care Reform? Or, no one gives a damn!
Are we in National Conversation making sense, or, are we all ricocheting from all of the sound bytes with which we are inundated like a billiard ball being hit too hard?
I do not understand a Body Politic that overwhelmingly elected Obama, the voice of change, the voice of compassionate concern, who while suffering through the worst financial crisis caused by our non-action in policing the economy, could not pull it together as a Body Politic for the next Calamity waiting to happen.
What is that Calamity? The runaway cost of Health Care, the escalating cost of Drugs to maintain our State of Health and the confiscatory cost of Insurance to pay for it all.
Something is missing? What it might be baffles me! It is so evident that we have to fix it or it will eat us for lunch. So why are we just confusing the issue?
It seems to me that Obama’s choice is in our combined best interests. If Congress cannot get its act together now when one party has 60 votes (filibuster proof) and the other has opted for irresponsibility it is a catastrophe beyond reckoning! Yet, it seems bogged down horribly. If it doesn’t pass forget it ever doing so in the future.
If it doesn’t pass it is time to give up and move away. The most of us will no longer be able to afford to live in this Nation. First the middle class will be bankrupt than the poor will be weaned by Welfare Reform consisting no support whatsoever.
This predicament cries to Heaven for Vengeance!
Sunday, September 27, 2009
The New York Times lead Editorial this morning is poignant to the moment. Read it by clicking on: Medicare Scare-Mongering.
What do I mean? One of the dictionary definitions of poignant is this: Affecting or moving the emotions. Of what feelings do I speak?
1. Bemused wonder! Is our political process such that we who follow it can be manipulated so easily and never learn?
Think of it. But a few years back we heard about privatizing Social Security at least in part. The reasoning was to make more money by investing in the market on our own and do better than the Government in investing.
The real reason: The housing bubble was close to reaching its margin of diminishing return. The same thing happened with the Dot.Com crisis in 2001. Without the Housing some new artificial stimulant was needed to maintain the baseless high to which financial values had soared.
This didn’t happen, we know what did, the Crash of ’08!
2. We had a surplus which was spent into the hugest deficit possible in but eight short years.
This happened for many reasons. A massive tax cut accompanied by a massive war acted like a giant sieve squandering our national worth. It was effective; it kept the guys responsible in office so the squandering could be continued.
The Pols in office who have gerrymandered district after district to make their offices safe.
Martializing of one party to make it work as one, all in lockstep! This empowered them who controlled the Party, the Vote, and the Money.
The Pols in office and the Party backing them who, by subsidizing the Global Corporate Military Industrial Complex, the Health Care, Pharmaceutical and Insurance Industries, have had the surplus money to buy politically whatever they want!
3. There are no more taxes that can be cut. The wars have weaned public opinion of the need for them which may eventually curb the costs of private contract combatants, the no-bid contracts, the armament spending and all the other expenditures that go into the funding of WAR.
The big profit reserves remaining are Health, Insurance and Pharmaceuticals.
The Mantra “Follow the Money” is no more evident than here.
It started in 1980. Subterfuge with disingenuous sloganeering: “Morning in America”, “Southern Strategy”, “States Rights”, “Starve the Beast” all of them saying but one thing:
Government should to no more than police the people. Human service is not in this job description!
So, how long are we to be manipulated? That period from the end of WWII was the most universally prosperous of any period I know. Three things made it so. The New Deal. The War. The Truman/Eisenhower policies that followed.
The attack started with the Conservative Clubs in the late '50’s. Goldwater candidacy in 1964. Coronation of Reagan in 1980.
This took us back to the age of the Robber Barons of the pre-depression age of America. Didn’t that end in Depression tell us enough? Apparently not.
So let’s exercise some discretion and discernment in seeing the Opposition to Health Care Reform for what it is. It is simply to keep it Morning in America!
Saturday, September 26, 2009
I read three articles worth the review yesterday and today after my return from a great hiking trip to the Lake Tahoe area.
I posted them in this order on my Archive:
1. When the Neighborhood Is the Retirement Village
2. When Elder Care Problems Escalate, You Can Hire an Expert
3. Taking Care of Parents Also Means Taking Care of Finances
Click on the Article title which is in hypertext linked to the article in the Archive.
These three articles come together in this respect. With AD, we who are afflicted with the disease and our poor caregivers who by the circumstance of default are faced with caring for us need all the help they can get.
In the past the option of care when it became impossible for the caregiver was to warehouse the afflicted in assisted living or nursing home facility. Now, with the impending deluge of numbers occasioned by the Boomers coming of senior age, and the escalating cost of care by a broken and confiscatory health care system, we are quickly coming to an economic crisis of epic proportion.
It seems in the recent past the Alz Orgs have concentrated on raising money to fund the cost of the cure. This undertaking is laudable, albeit no discoveries of a cure, after how much money has been raised and expended all to the benefit of the Pharmaceutical Industry? The Industry is benefiting from this effort! Are we who are vitally affected by this horrible disease being benefited equally? Not yet at least, last time I looked I still have it and it is following its slow debilitating course.
We need to look out for ourselves because we will be if not already sorely affected by this developing calamity.
The first of the posted articles discusses pooling of services where a high proportion of folks needing them live. This is a beautiful concept of converting your home into your care place, pooling the costs of all those in need by their proximity to one another. It is like bringing the Doctor’s office home.
The second article talks of a service too often overlooked or not yet in place. A manager of care resource is essential. There is no way we can know what to do or where to go.
The third article is the nitty gritty, financing it! Unless you qualify for Government Assistance which so many of us who did save for our retirement do not, YOU PAY THE BILL YOURSELF until your funds are spent down to a sum which is not enough for your spouse to live on should he/she survive while you are in the slow process of dying in the Nursing Home.
This is a dour outlook, nonetheless it is ours. It needs our attention
Sunday, September 20, 2009
The Washington Post ran an analysis this morning about the real costs of health care. If you are wavering at all about Health Care Reform this is a must read! Our system of Health Care Administration is a Cancer on the Country which is embedded in and has subtlety enmeshed its fingers through our entire body politic.
You will find it by clicking on its following title to which I have hyperlinked.
You Have No Idea What Health Costs
If You Did, You Might Just Want Real Reform
Saturday, September 19, 2009
So how long need we go with the Washington weighing every possible reason not to, with so many reasons to do what needs to be done! When the President noted preexisting acne, not disclosed, as cause to deny coverage for a current medical problem needing treatment, I was I am sure along with many others incredulous to the point of disbelieving. With some pondering I decided he could not have used such a banal example if it wasn’t true.
The article today that ran in the Washington Post gives credence to President Obama’s charge. Read it on my archive by clicking on: Acne, Pregnancy Among Disqualifying Conditions.
Why is it we cannot do what needs to be done? The right seems irresponsible, all opposition nothing productive, the left can’t get it together, the ghost of campaign contributions by interests favoring status quo keeps manifesting itself by the paralysis that continues.
Thursday, September 17, 2009
I think the view is appropriate distinguishing the "Bought and Paid For" system in Washington is not Capitalism, but rather a system using and manipulating the free vote we exercise. It is intended to stifle competition with its hidden agenda packing the Congress with their own interests!
It is this that is working against Health Care Reform and all of the other reforms sorely needed to survive this predatory economy in which we live.
The entire opinion is posted on my Archive. Click on Corporatists vs. Capitalists to read it.
When I heard the word "corporatist" a couple of years ago, I laughed…
Well, as it turns out, it's a great word. It perfectly describes a great majority of our politicians and the infrastructure set up to support the current corporations in the country. It is not just inaccurate to call these people and these corporations capitalists; it is in fact the exact opposite of what they are...
Politicians are very cheap to buy (and senators from smaller states are even easier to buy - great bang for your buck). So, obviously corporations are going to look to buy them so they can pass laws to kill off their competition. If you don't understand this, you're being at least a little bit dense…
Blaming the corporations for this is a little silly. It's like blaming a man for breathing or a scorpion for stinging. That's what they do. In fact, they are legally bound to make their best effort at not just crushing the competition, but eliminating it. Lack of competition will lead to making more money (presumably for their shareholders; though realistically it winds up being for their executives these days)…
But in order to have capitalism we must have choice. If consumers do not have different companies to choose from, if the markets aren't truly free and there is no real competition, then you kill capitalism. Corporations are a natural byproduct of capitalism, but as soon as they are born they want to destroy their parent. Corporations are the Oedipus of the capitalist system.
In order for capitalism to work, they must not be allowed to succeed. We must guard capitalism jealously.
So, it is of the utmost importance that we watch politicians with a very wary eye. Campaign contributions are a tiny expense to a large corporation. And the politicians treasure them too much. It is an easy sale. So, beware of politicians receiving gifts.
The perfect example of this is the health care reform debate going on now. And perhaps there is no better example of a politician who works for his corporate overlords than Max Baucus, who has received nearly three million dollars from the health care industry.
I don't blame the health care companies. I would do the same thing in their position. In fact, it is their fiduciary responsibility to buy an important (and cheap) senator like Max Baucus (he's cheap because he comes from the small state of Montana, where it is far less expensive to buy ads and crush your political competition with money they cannot possibly match).
If the health care companies can eliminate their competition, they'll make a lot more money. That is why there is so little competition among corporations in so many parts of the country now and why they are desperate to avoid the public option. They'd have to be stupid and negligent not to buy Max Baucus. He is the head of the Finance Committee and in charge of writing the most touted and awaited version of the health care bill.
Tuesday, September 15, 2009
I have posted three articles in my archive today. Read together I come up Mystified!
The articles are:
1. The Wall Street Casino, Back in Business
2. For Obama, a Chance to Reform the Street Is Fading
3. A World of Hurt
The first, Eugene Robinson wrote in the Washington Post:
The wizards of Wall Street are raring to get back to business as usual -- and if we let them, we'll have only ourselves to blame when the next meltdown comes.
The behemoth financial firms have gotten even bigger… the economy has begun to revive, … but somebody needs to slap the incipient grin off Wall Street's face.
And many economists think there's another blow coming.
Even with the reforms the president is proposing, we will still have a situation in which the tail wags the dog -- the tail being the financial system and the dog being the economy.… Wall Street's actual role is more like that of a giant casino where the gamblers are rewarded for taking outrageous, unconscionable risks with other people's money. If the bets pay off, the gamblers win. If the long-shot bets turn out to have been foolish, we're the ones who lose.
The main event is making Wall Street serve the economy again, rather than the other way around. Putting more security cameras around the casino isn't nearly enough.
The second, a news article in the New York Times reports:
But with the markets slowly healing, Mr. Obama’s plan to revamp financial rules faces a diminishing political imperative. Disenchantment by many Americans with big government, along with growing obstacles from financial industry lobbyists pressing Congress not to do anything drastic, have also helped to stall his proposals.
Senior officials have acknowledged that as the financial system begins to mend, a kind of political inertia sets in as lawmakers have less of an incentive to act boldly.
But with the Senate preoccupied with the president’s health care plan and strong opposition to central provisions of the financial overhaul, the president faces major hurdles on both the substance and the timetable.
The third, Bob Herbert, columnist states in the NYT today the real truth: The Bubble Bust broke not only the markets but it broke all of us save some of the rich. The rest of us haven’t received the needed attention and won’t if we smile happily and let it all go now!
Now, with the financial sector stabilized and economists predicting that the Great Recession is nearing an end, the sighs of relief coming out of Washington and Lower Manhattan are understandable. But this is no time to lose sight of the wreckage all around us. This recession, a full-blown economic horror, has left a gaping hole in the heart of working America that is unlikely to heal for years, if not decades.Need anything more be said?
Fifteen million Americans are locked in the nightmare of unemployment, nearly 10 percent of the work force. A third have been jobless for more than six months. Thirteen percent of Latinos and 15 percent of blacks are out of work. (Those are some of the official statistics. The reality is much worse.)
Consider this: Some 9.4 million new jobs would have to be created to get us back to the level of employment at the time that the recession began in December 2007. But last month, we lost 216,000 jobs. If the recession technically ends soon and we get to a point where some modest number of jobs are created — say, 100,000 or 150,000 a month — the politicians and the business commentators will celebrate like it’s New Year’s.
But think about how puny that level of job creation really is in an environment that needs nearly 10 million jobs just to get us back to the lean years of the George W. Bush administration.
We’re hurtin’ and there ain’t much healin’ on the horizon
Monday, September 14, 2009
Snowe says NO!to Public Option
In my morning news review today I came across the following 2 reports that related in my mind:
(CBS) Moderate Republican Senator Olympia Snowe (R-Maine) said a public option in the health care bill is "universally opposed by all Republicans in the Senate" and called it "a roadblock to building the kind of consensus that we need to move forward," on "Face the Nation" Sunday. 9/13/09
What is a health insurance co-op? NYT Prescriptions, Making sense of the health care Debate 8-12-09
A health insurance cooperative, as envisioned by some members of Congress, would provide health insurance coverage and care, and be controlled by its members — the people it insures. Because co-ops would be nonprofit and owned by consumers, administrative costs should be minimized. Co-ops would compete with private health insurers for subscribers and would need to have enough members to negotiate competitive prices with doctors and hospitals. Proponents say a health co-op might need 25,000 members to be financially viable, and at least 500,000 members to negotiate effectively with health care providers.Three reasons as I see it.
The co-ops could be formed at the national, state or local level. To help doctors, hospitals, businesses and other groups create co-ops, one proposal in Congress would have the government offer start-up money in loans and grants.
Health care cooperatives could inject competition in some insurance markets around the country, economists and health policy experts said. But the co-ops would need time to buy sophisticated information technology and to negotiate contracts with doctors, hospitals and other health care providers.
1. With the democrats squabbling failing to discipline themselves cohesively as a Political Party,
2. With the Senate lacking the 60 votes to overcome a filibuster because of the unfortunate death of Ted Kennedy,
3. With the danger incumbent on going to the Senate Rules to circumvent the filibuster and act on the bill with a majority.
a. What is the danger?
b. Loss of momentum should the procedure get in trouble.
c. The consensus of Congress is shaky enough without risking the circumvention procedure and losing passage by reason of it.
If it needs to pass without the Public Auction, What do we have?
1. The other measures of the bill such as,
a. Universal entitlement to coverage
b. Right of Migration from one job to another without loss of coverage.
c. Making it unlawful for a Carrier to deny coverage or rate your premiums up on claims experience.
d. As many of the other controls and regulations being considered as is possible to get passed.
2. Co-ops: The likely point of compromise.
a. Are they worth it????
b. Why we can’t have Public Option as the control defies me. Where does it hurt? Will it hurt any more than Social Security or Medicare which is beyond option? The only reason seems to be to avoid that competition to the private interests now providing care, and charging for it.
Their bottom line is PROFIT! How long America are we going to be looted and financially defiled by the Special Interests who control all, including it seems the bought and paid for Members of Congress.
c. What bothers me most about Co-ops:
i. Are the any different than the HMO’s that had so much promise and in the end short changed service to keep the managers, administrators, financers and organizers rolling in dough?
ii. The above explanation says:
A health co-op might need 25,000 members to be financially viable, and at least 500,000 members to negotiate effectively with health care providersiv. It is obvious the large group will be have a better base with which to negotiate.
The co-ops would need time to buy sophisticated information technology and to negotiate contracts with doctors, hospitals and other health care providers.
iii. The bill will unlikely go into effect for four years the reports say. What more time will be needed for a Co-op to get organized and operation with membership sufficient for it to be effective?
1. How is either group controlled from the looting and pillaging for profit for the folks on top at the expense of the folks below for whom the service is supposed to be provided?
2. What kind of experience rating will go into the premiums charged the groups?
3. It seems to me this is but one more option for manipulation and advantage of the few just like Prescription Drug Part D quickly became after the bait and switch of its passage.
Oh Well! Getting anything through is at least a start on reform needed not only in the health care system but in the financial system as well.
Saturday, September 12, 2009
On one of the Alzheimer’s Blogs I participated in a discussion about whether or not an AD afflicted one should step in an take their own life to save others the pain and cost of caring for them, and to save themselves the indignity of going through the later stages of AD.
It is a fetching question and as an AD afflicted I have periodically looked at it as a logical solution. Once when I considered it in the ethical balance of saving my wife the cost and burden of caring for me; considering it within the confines of ethical responsibility; I asked this question: Is it more ethical for me to spare my wife and family this burden when I am no longer with them, I have become a vegetable?
On September 8, 2009 I posted on this Blog the comment entitled SIT AND WAIT, OR CALL FOR HEMLOCK?
Currently my resolution of the issue accepts the thinking invoked by my Rabbi’s comment: “Would you rob your loved ones the opportunity to care for you?” together with my view gleaned from my writing on this issue. It remains my view to live life from one step away observing it and not getting in the way of it. Let it happen, stay out of its way. In spite of your best intentions life happens on its own terms and only in retrospect do we see the sense of it.
Using the forgoing reasoning learned from 72 years of fighting to overcome the losses and reverses that inadvertently derailed my best laid plans I have come to believe, let things unfold as they will for the best results. This tells me to do nothing and live life out as it deals itself.
Nonetheless, three comments listed below cause me concern about my decision. I could not agree more with the comments of each of them. These are views from the trenches, from earnest thinking folk who are in the real throes of our disease.
I wonder if your Rabbi has ever taken care of a loved one with AD/dementia AND if he did, did he have the resources to do so????
I don't have any ethical dilemmas when it comes to MY end of life.
Many times people of faith want to tell us what WE should do yet many of them are clueless. They mean well. Have read a lot of books on faith, psychology and theology, have studied theories yet few have even "been there!" Hands on care, day by day!
Please, don't misunderstand me. I know Rabbi's, priests, preachers and other religious people. I did some soul searching years ago. What works for me may not work for others and that's ok.
Personally, I don't feel like I will rob my daughter of anything by her watching me slowly turn into something she doesn't recognize and probably won't want to be around but will do so out of love and duty! On top of that, perhaps spending her last dime trying to keep me comfortable??? That's NOT for me or my daughter!
But, hey, we're all different! What works for me may not work for others. I'm NOT advocating anything for anyone but myself!
I agree. The decisions we make are personal meaning that they are different for different people for different reasons and I believe such is okay. I haven't given a lot of thought to my demise except that it will be painful for my family regardless of how and when it happens. Having watched my mother and brother as they traveled their journey with AD, I have seen and felt the impact, on two different levels, of such. I do know that I don't want my children and my husband to spend their lives taking care of me after I get to a point where I no longer have a clue who I am or what is going on with me. I don't see such as robbing them of anything. I think everyone should have the opportunity to live their own lives with the best quality of such as they can. However, in my case, if I don't know what is going on, why would I want to put the extra burden on my immediate family to go thru the gut-wrenching tasks of physically caring for me? I just think what each of us wants and/or think we need is our own individual decision. As far as religion is concerned, to each his own. I think such is our choice.
I'm 100% w/you! It's a personal decision. And until somebody else has walked their life in my shoes, then they'd understand.
I most definitely DO NOT WANT MY FAMILY CARING FOR ME, changing diapers, making sure that my body is turned over ever so often to assure no bed sores (another item added to the list of AD),talking mean to my family, when I'd have no idea what I'm saying or why! The list goes on and on! I want my demise to be dignified! And you know what? God is supposed to be a forgiving god. I personally feel that why anyone decides to end their life is their own business!
The other side of this coin is presented in an article that ran in the New York Times recently. This speaks of the wonders of living through end of life by nuns whose experience match whatever Buddhist writers say on the same topic.
Read it, you will find it on my Archive, click on: SISTERS FACE DEATH WITH DIGNITY AND REVERENCE. It is well worth the read!
Friday, September 11, 2009
Inattention will lead to a quicker digression into later stages of the disease where it becomes a greater burden on us, our caregivers and our community.
One of the PRIMARY ingredients of obtaining an early diagnosis is the doctor with whom you choose to consult. This can make or break the chance of getting a diagnosis of AD should such a diagnosis be made.
The reasons are many the first of which is the difficulty in making the diagnosis. The only sure way is by autopsy. Neuro-Psychometric Testing is an effective tool that involves a subjective evaluation of the testing results (raw data) by a Neuro-Psychologist. Some Doctors who rely on the objectivity of lab testing have difficulty with this diagnostic step taken by a psychologist.
A CTScan with contrast or an MRI or PET scan if findings are shown has a greater reliability for the doctor. Just like a thermometer gives a more reliable reading of temperature than your Mom's touch of the back of her hand to your cheek.
The simple bias of all of us affects the doctor’s choice in saying Yea or Nay to an AD diagnosis. Too often the Stereotype of AD as the guy drooling in the corner, or the kind wish not to hang such a diagnosis on a person unless there is no other choice, all make it difficult for the Doctor to exercise diagnosis in its truest and fullest art form, that is, saying “Although nothing is conclusive, this has all the earmarks of AD, therefore I diagnose that as what it is!”
Having to do with getting a diagnosis I have posted an article in my Archive entitled The Most Important Alzheimer's Decision of Them All--Finding a Competent Personal Care Physician (Part One)
This was carried on The Alzheimer's Reading Room. This particular Blog is loaded with general info on AD and I recommend it.
Thursday, September 10, 2009
Following President Obama’s National address on Health Care last night my thoughts hearkened back to the cogency of Paul Krugman’s Op-Ed last week. It speaks for itself!
August 31, 2009 New York Times
Missing Richard Nixon
By PAUL KRUGMAN
Many of the retrospectives on Ted Kennedy’s life mention his regret that he didn’t accept Richard Nixon’s offer of a bipartisan health care deal. The moral some commentators take from that regret is that today’s health care reformers should do what Mr. Kennedy balked at doing back then, and reach out to the other side.
But it’s a bad analogy, because today’s political scene is nothing like that of the early 1970s. In fact, surveying current politics, I find myself missing Richard Nixon.
No, I haven’t lost my mind. Nixon was surely the worst person other than Dick Cheney ever to control the executive branch.
But the Nixon era was a time in which leading figures in both parties were capable of speaking rationally about policy, and in which policy decisions weren’t as warped by corporate cash as they are now. America is a better country in many ways than it was 35 years ago, but our political system’s ability to deal with real problems has been degraded to such an extent that I sometimes wonder whether the country is still governable.
As many people have pointed out, Nixon’s proposal for health care reform looks a lot like Democratic proposals today. In fact, in some ways it was stronger. Right now, Republicans are balking at the idea of requiring that large employers offer health insurance to their workers; Nixon proposed requiring that all employers, not just large companies, offer insurance.
Nixon also embraced tighter regulation of insurers, calling on states to “approve specific plans, oversee rates, ensure adequate disclosure, require an annual audit and take other appropriate measures.” No illusions there about how the magic of the marketplace solves all problems.
So what happened to the days when a Republican president could sound so nonideological, and offer such a reasonable proposal?
Part of the answer is that the right-wing fringe, which has always been around — as an article by the historian Rick Perlstein puts it, “crazy is a pre-existing condition” — has now, in effect, taken over one of our two major parties. Moderate Republicans, the sort of people with whom one might have been able to negotiate a health care deal, have either been driven out of the party or intimidated into silence. Whom are Democrats supposed to reach out to, when Senator Chuck Grassley of Iowa, who was supposed to be the linchpin of any deal, helped feed the “death panel” lies?
But there’s another reason health care reform is much harder now than it would have been under Nixon: the vast expansion of corporate influence.
We tend to think of the way things are now, with a huge army of lobbyists permanently camped in the corridors of power, with corporations prepared to unleash misleading ads and organize fake grass-roots protests against any legislation that threatens their bottom line, as the way it always was. But our corporate-cash-dominated system is a relatively recent creation, dating mainly from the late 1970s.
And now that this system exists, reform of any kind has become extremely difficult. That’s especially true for health care, where growing spending has made the vested interests far more powerful than they were in Nixon’s day. The health insurance industry, in particular, saw its premiums go from 1.5 percent of G.D.P. in 1970 to 5.5 percent in 2007, so that a once minor player has become a political behemoth, one that is currently spending $1.4 million a day lobbying Congress.
That spending fuels debates that otherwise seem incomprehensible. Why are “centrist” Democrats like Senator Kent Conrad of North Dakota so opposed to letting a public plan, in which Americans can buy their insurance directly from the government, compete with private insurers? Never mind their often incoherent arguments; what it comes down to is the money.
Given the combination of G.O.P. extremism and corporate power, it’s now doubtful whether health reform, even if we get it — which is by no means certain — will be anywhere near as good as Nixon’s proposal, even though Democrats control the White House and have a large Congressional majority.
And what about other challenges? Every desperately needed reform I can think of, from controlling greenhouse gases to restoring fiscal balance, will have to run the same gantlet of lobbying and lies.
I’m not saying that reformers should give up. They do, however, have to realize what they’re up against. There was a lot of talk last year about how Barack Obama would be a “transformational” president — but true transformation, it turns out, requires a lot more than electing one telegenic leader. Actually turning this country around is going to take years of siege warfare against deeply entrenched interests, defending a deeply dysfunctional political system.
Tuesday, September 8, 2009
I recently read the Blog entry of a friend who is caring for her mother with AD. She has Early Onset, Early Stage AD herself. Diagnosed at 53 was she. I recommend reading her Blog entry for Labor Day that you can find by clicking on I Think Today is Labor Day
Lisa’s Carbo's Blog is named: THOUGHTS FROM THE ROLLER COASTER, Thoughts, feelings and ideas on this long, slow journey into the Alzheimer's Twilight Zone.
My letter to her posted in response is as follows:
Hi Lisa: I read your Labor Day Blog Entry. My heart pounded with your pain. My sympathy extends to the paradox with which you are dealing with you Mom and Dad. It beat even harder because your discussion will soon enough be the discussion of each of us affected by this curse having AD.
End of Life is an important issue, made more important because our course to it is known and can be planned for while going there, It is even more important because it is such a pain losing our minds and watching our body waste away. Let me stay in Early Stage, I can handle this. The latter stages, about those coming to me I shudder.
What should ours be in our End of Life process? Should we contritely accept and suffer it through waiting its outcome?
Do we have standing to say: “No, enough already, this makes no sense for me nor for those loved ones around me! My mind and my body are going out the door and my consciousness but waivers in and out as I lie here.” Certainly, the thought has to be considered: “Why not get on with it to whatever is next. I am doing no good here and but prolonging the heartache and draining the pocket book of those around me?”
That is the practical! Next comes the ethical!
My Rabbi said: “Would you rob your loved ones the opportunity to care for you?” She packed a lot for thought into the simple question.
I have trusted life this far. As I have learned to step back and let life happen staying out of the way, not interfering, not intruding with my own view of what’s best, things have happened as they are supposed to.
For me this means I sit back and allow my disease to take its course.
In the meantime it is mine to expend the effort to do what I can to make that time easier. My effort is comprised in my Alzheimer’s Mission Statement to advocate for:
• Cost of Care, Economy of Care and the Need of a Different Kind of Care for those in Early Stage AD.
• This advocacy is my mission to make my having this disease come to some worth as sit in the shade and silently slip into Mid and Late Stage.
This mission directs itself more to a compassionate end. That end is hopefully to ease the load of my loved ones. In doing that I step beyond my immediate circle and include as my loved ones everyone effected by this miserable disease. I hope by doing this I make a dent in the apathy that persists about our disease and the social, economic abandonment suffered by so many because of it.
I have also found my concerns answered in the wonderful book written by Rose Lamatt. This book is: Just a Word reference to which can be found at her Authors Web Site
In it she relates her story of caring for her dear friend Carol who contracted AD. Rose cared for her at home than after she entered a nursing home where she progressed to her death, taking a very painful path getting there. At the end, after Carol’s death she tells of thanking God for the gift of caring for her. This struck my heart as though all of its harp chords had been strummed all at the same time.
My AD is my gift of my higher power to act appropriately with it and to do as much good as I can by reason of having it. I can go to my end with that thought and pray for the strength and love of my dear ones in having to deal with me.
Sunday, September 6, 2009
Mr. Obama must stand tough for a comprehensive plan that would benefit both the uninsured and most other Americans as well.
This comprises a comment I make of the New York Times Editorial Section to the their Editorial PRESIDENT OBAMA’S HEALTH CHOICES. I have posted the article in my Archive. Click on its name just above and that link will take you there. I recommend it, coupled with my comment to it that follows:
September 6th, 2009
Bravo Times Editorial Staff. This could not be said better. This position could not be better taken. It is time to go it alone because it cannot be done collegialy with the unfortunate posture taken by the right.
It is evident nothing will be accepted. If another complaint is met with compromise the agenda immediately changes to another fault.
Behind this is another silent agenda, not the first of its kind with the right. They did it before, they are doing it again. The evident southern strategy is at it again.
This opposition no matter what, aimed directly at killing the Obama Presidency, is manifestly intended to "Rid us of that Uppity One" with no present thought given the needs of the country!
Saturday, September 5, 2009
Posted: 05 Sep 2009 08:44 AM PDT
The following post is taken from Alzheimer's Reading Room. Although it is not an earth shattering revelation, it nicely lays out the eight types of dementia one of which, and the most major of which, is Alzheimer's. I hear about the others but never saw them placed altogether under the classification of Dementia. I therefore post it "FYI"
Dementia is a clinical syndrome that includes loss or decline in memory and other cognitive abilities.
Dementia is caused by various diseases and conditions that result in damaged brain cells. Brain cells can be destroyed by brain diseases, such as Alzheimer’s disease, or strokes (called vascular or multi-infarct dementia), which decrease blood flow to the brain.
Alzheimer's disease is the most common cause of dementia.
Dementia can be caused by any of the following: AIDS, high fever, dehydration, hydrocephalus, systemic lupus erythematosus, Lyme disease, long-term drug or alcohol abuse, vitamin deficiencies, poor nutrition, hypothyroidism or hypercalcemia, multiple sclerosis, brain tumor. Dementia can also result from a head injury that causes hemorrhaging in the brain or a reaction to a medication.
Dementia includes decline in memory, and at least one of the following cognitive inabilities:
1. Ability to generate coherent speech and understand spoken or written language;
2. Ability to recognize or identify objects, assuming intact sensory function;
3. Ability to execute motor activities, assuming intact motor abilities, sensory function and comprehension of the required task;
4. and Ability to think abstractly, make sound judgments and plan and carry out complex tasks.
The decline in cognitive abilities must be severe enough to interfere with daily life.
Different types of dementia are associated with distinct symptom patterns and distinguishing microscopic brain abnormalities.
Common Types of Dementia and Their Typical Characteristics
Alzheimer’s disease. Most common type of dementia; accounts for 60 to 80 percent of cases.
Difficulty remembering names and recent events is often an early clinical
symptom; later symptoms include impaired judgment, disorientation, confusion,
behavior changes and trouble speaking, swallowing and walking.
Hallmark abnormalities are deposits of the protein fragment beta-amyloid
(plaques) and twisted strands of the protein tau (tangles).
Vascular dementia. Considered the second-most-common type of dementia.
Impairment is caused by decreased blood flow to parts of the brain, often due
to a series of small strokes that block arteries.
Symptoms often overlap with those of Alzheimer’s, although memory may not
be as seriously affected.
Characterized by the presence of the hallmark abnormalities of Alzheimer’s
and another type of dementia, most commonly vascular dementia, but also
other types, such as dementia with Lewy bodies, frontotemporal dementia and
normal pressure hydrocephalus.
Dementia with Lewy bodies.
Pattern of decline may be similar to Alzheimer’s, including problems with memory, judgment and behavior changes.
Alertness and severity of cognitive symptoms may fluctuate daily.
Visual hallucinations, muscle rigidity and tremors are common.
Hallmarks include Lewy bodies (abnormal deposits of the protein alphasynuclein)
that form inside nerve cells in the brain.
Many people who have Parkinson’s disease develop dementia in the later stages of the disease.
The hallmark abnormality is Lewy bodies (abnormal deposits of the protein
alpha-synuclein) that form inside nerve cells in the brain.
Involves damage to brain cells, especially in the front and side regions
of the brain.
Typical symptoms include changes in personality and behavior and diffi culty
No distinguishing microscopic abnormality is linked to all cases.
Pick’s disease, characterized by “Pick’s bodies,” is one type of frontotemporal
Rapidly fatal disorder that impairs memory and coordination and causes behavior changes.
“Variant Creutzfeldt-Jakob disease” is believed to be caused by consumption of
products from cattle affected by “mad cow disease.”
Caused by the misfolding of prion protein throughout the brain.
Normal pressure hydrocephalus.
Caused by the buildup of fluid in the brain.
Symptoms include difficulty walking, memory loss and inability to control urine.
Can sometimes be corrected with surgical installation of a shunt in the brain to
drain excess fluid.
Mild cognitive impairment is a condition in which a person has problems with memory, language or another essential cognitive function that are severe enough to be noticeable to others and show up on tests, but not severe enough to interfere with daily life.
Some people with mild cognitive impairment go on to develop dementia. For others, the symptoms of mild cognitive impairment do not progress to dementia, and some people who have mild cognitive impairment at one point in time later revert to normal cognitive status.
Thursday, September 3, 2009
Today I have posted an article on my Archive taken from CNN entitled: Commentary: Open your minds, America. It is worth the reading. Click on it to go to the Archive and read it. I urge you to do so because of the relevance it holds for our Modern Age!
One statement in the article heralds its import:
Let's engage in some constructive lifestyle management, slowing down to ponder -- and make independent decisions -- as enlightened people. We cannot allow the technological evolution to rob us of the intellectual strides of the American Revolution.I have been sickened for so long with the amount of mind manipulation that has become our way for major political and economic decision making. Derision of position and a me too policy have led us too long!
How could we have “Me Too’d” our way our way into Iraq? How is it possible the so called sharpest minds on Wall Street led us into the pyramid schemes dwarfing Bernie Madoff’s and leading to the Crash of 2008
Everything is given labels. Labels were once meant for reference. They have now become definition of what they describe. Description and review of issues has reduced to sound bites, normally derisive, identified by the nature of its source. Fox and MSNBC are probably the most identifiable polarized sources; the New York Times and Wall Street Journal are not far behind.
Walter Lippman in the early 20th Century wrote Public Opinion. His was a scholarly analysis of the danger of technology being use to manipulate public opinion and manage results. (The current technology leading to his concern was that offered by News Papers and Radio in it infancy) His concern among other things was the hidden agenda that could produce the manipulation and the management of opinion.
Al Gore in his more recent book Assault on Reason described how all of that has happened putting us where we are today. His savings grace was his view that the interaction on the internet will redirect the course of event forcing exchange of ideas, promotion of thoughtfulness, weighing of issues and disclosure of ulterior motives taken by the disingenuous.
I hope he is right because we have become a thoughtless bunch. The current Health Care debate is the metaphor of what is wrong with how we communicate. I pray to all of our Gods that we rise above ourselves and get about thinking our way through things.
Tuesday, September 1, 2009
The paradox is irresolvable! If I go to the “Home” (Nursing, Assisted Living) my loved ones have the sadness of my removal from their active lives. That is tolerable because it’s no picnic with me at home. The worst factor is the cost of me going into the “Home”. It has the potential to break the bank and put my wife in poverty. Argh!
It is this conundrum that requires attention. We need to repair the system and make it responsive to the needs it is supposed to serve.
In my view the system has denigrated into profit making schemes too often homogenized by over-structuring and over-organizing for the purpose of finding economy in numbers rather than quality in care. The infrastructure is there: establishing it and building it is where the money is. When it is all done there is just not enough left to pay the help.
This issue needs resolution and the direction favors home care.
I have posted an article in my archive that addresses this very issue. You will find it by clicking on Is Family Caregiving Better Than Institutional Care? This link will take you to the Archive