Here in the United States, most of the country started Daylight Savings Time (DST) at 2:00 a.m. on Sunday, March 13, 2016, which moved our clocks forward an hour.
Both the beginning and end of DST are tough changes on even the healthiest among us. For someone like me who has had hardwired sleep challenges all my life, the beginning of DST is particularly hard for me for about a week until my body and brain adjust to the change. Continue reading
On February 29, 2016 Tonja Carter, the estate lawyer and trustee for Harper Lee who replaced Alice Lee after her death in 2014, asked, through the legal firm representing her, an Alabama court to seal Harper Lee’s will from the public, claiming that Harper Lee wanted the same privacy in death that she made sure, for as long as she was able, in life.
On March 4, 2016 Monroe County, Alabama Probate Judge Greg Norris granted the request.
Given the suspicious circumstances around the publication of Go Set A Watchman, this latest legal action raises, at least for me, a whole new set of red flags. Continue reading
Today, February 7, 2016, the 50th Super Bowl game in NFL (National Football League) history will be played by the Carolina Panthers and the Denver Broncos. Therefore, it is appropriate to discuss the other dark and dangerous side of this football game – and all the ones played before and all the ones that will be played after – before it is played.
Super Bowl games have become extravagant and lavish productions in the last ten years or so, intended to bring into the audience people who normally either don’t have interest in the game or don’t normally watch football. Super Bowl games also represent an obscenely huge financial windfall for the NFL and for advertisers with enough money to pay for the coveted and outrageously expensive advertising spots during the game. Continue reading
A revival of the claims in an earlier research study that over-the-counter anticholinergic medications (which includes Benadryl and many of the PM versions of acetaminophen and ibuprofen) causes an increased risk of developing dementia is making its way around social media.
As I strongly urge on a continual basis, we must be aware and intelligent about the context of all research and the tendency among humans to extrapolate generalizations and make them absolute truths from very specific research studies, as well as to perpetuate misinformation, disinformation, and out-and-out lies.
We have the responsibility to thoroughly educate ourselves about these diseases and get all the facts – if there actually are any (many of the more outrageous things I’ve seen have little to no factual basis and yet they are the very things that people widely distribute as truth) before believing anything you see and hear (or read).
The more you learn and know about these neurological diseases, the better able you will be able to distinguish between what is true and what is not (there is a lot of garbage and there are a lot of garbage claims out in cyberspace – when we fall for it, 
we, frankly, show our ignorance and unwillingness to do the work required to get any kind of comprehensive and knowledgeable understanding of these diseases).
The facts about this study, its context, and over-the-counter anticholinergic medications are in this clinical report.
Grief is complex and complicated and no two people grieve the same way.
However, the more we’ve become connected in a 24/7 way through technology, the more we’ve become a shiny-happy-people (I am a huge R.E.M. fan, but this song annoyed me beyond words the first time I heard it and continues to do so now) society that focuses on the inane, on fluff, and on the ridiculous and real, palpable, tangible grief rains on that parade of lollipops, unicorns and butterflies.
As a result, it (and the grievers) are prime targets for some of the most judgmental, critical, harsh, and mean things that people can say and do to other people.
Better to grieve alone, in private, keeping the deepest secrets and pain in our souls to ourselves than to have the grief compounded by ignorance, attacks, and accusations.
There are no “silver bullet” solutions to the growing epidemic of dementias and Alzheimer’s Disease among the human population.
Almost daily, there are reports – from the internet, which is a numbers game in terms of reliability and accuracy of information (the more hits a site gets, the higher it appears in the search engines), not an indicator of expertise and factual information – of “silver bullet” solutions to these neurological diseases.
I suppose, because of the devastating effects of the journey through dementias and Alzheimer’s Disease that our loved ones experience and we, as caregivers, intimately deal with as we go through the journey with them, that we all our susceptible to a measure of magical thinking that leads us to even remotely consider or believe the most outlandish – and patently false – claims that a solution will reverse or cure these irreversible and incurable neurogically degenerative diseases.
What makes me angry about the “silver bullet” solutions that keep cropping up is that they prey on the vulnerable (and that includes us, as caregivers), giving false hope and, often, reaping a huge monetary reward (if they’re selling the “silver bullet” solution) at our expense.
This conduct is shameful. This conduct is cruel.
How can we as caregivers avoid falling into the “silver bullet” solutions trap?
First, we must educate ourselves and study diligently to learn and know the facts about dementias and Alzheimer’s Disease. We must understand the physiology, neurology, and neuroscience of the brain.
Going Gentle Into That Good Night has many, many articles that detail, from a layperson’s point of view, each of the dementias, including Alzheimer’s Disease, as well as factors in their development and the prominent indicators of each type of dementia.
Second, we must understand dementias and Alzheimer’s Disease in terms of their steps and what to expect in each stage and how to walk with our loved ones with these neurological diseases through each step.
This is not the oversimplified stage progression that the Alzheimer’s Association (which does not include details of exactly what happens in a detailed and sequential way and nor what and how we caregivers successfully navigation through the journey of these diseases).
Without a deep and thorough understanding of how dementias and Alzheimer’s Disease begin (often decades before any overt symptoms appear), progress, and end, we will be susceptible to the false information and misinformation of “silver bullet” solutions, which will do neither our loved ones or us any good, and will only add additional unnecessary suffering to our journeys through these neurological diseases.
Ignoring or avoiding this aspect of our educational process will not make the development of the development and progression of dementias and Alzheimer’s Disease go away. Instead, it will only make the journey for our loved ones and us as caregivers harder, more painful, and more sorrowful than they should be or need to be. The choice is ours.
Third, we need to become experts at discerning credibility and balderdash in the information coming at us.
I see articles all the time (not in just discussing dementias and Alzheimer’s Disease, but everywhere in life) from websites that are clearly not credible – look at the website name first and that will give you good insights into the quality of the information source – (and the information is misleading, at best, and totally false, at worst) presented and endorsed by a surprisingly high number of people as “truth.”
That is because of profound, and in many cases, willing ignorance. We, as caregivers for our loved ones with dementias and Alzheimer’s Disease, cannot afford to be ignorant about these neurological diseases.
There are plenty of snake oil propagators and sales people on the web. They want you to believe them either because they want to make a name for themselves or they want your money. Or both.
It’s that simple. We must be vigilant to not fall for the snake oil propagators and the snake oil sales people. We – and our loved ones with dementias and Alzheimer’s Disease – will be the losers in this equation. Always.
And, fourth, we have to recognize our own capacity for magical thinking. Even as children, we have an innate capacity to believe things that are unrealistic or untrue, but they are how we want them to be.
That is part of being human. While there is an aspect of this ability that feeds imagination and creativity productively, the majority of it leads us to the unhappiness of disappointment, disillusionment, and denial of what’s right in front of our faces.
That does us no good and it does our loved ones with dementias and Alzheimer’s Disease no good. In fact, it does us all a lot of harm in the long run.
We must be willing to confront these neurological diseases head-on, realistically, without the blinders of illusions and false hopes hindering our competent, compassionate, and loving care for our loved ones with dementias and Alzheimer’s Disease.
Our loved ones are depending on us to do this. They deserve our best and most-well-informed efforts on their behalf because they’ve placed their trust and their lives in our hands.
What will we do?
Most dementias – Lewy Body dementia, vascular dementia, early-onset dementias, alcohol-related dementia, and Alzheimer’s Disease among them – appear seemingly suddenly as primary and distinct neurodegenerative processes without definitive causes (except in the case of genetic inheritance, which primarily occurs in rare dementias like Corticobasal Degeneration, Progressive Supranuclear Palsy, and Fatal Familial Insomnia and some of the early-onset dementias).
However, there are a group of neural disorders, which are caused by the same genetic mutation that affects lipid storage in the body, that often have dementia as a secondary symptom as the diseases progress.
These neural disorders (all these have sphingolipid metabolism dysfunction in common) – which include Niemann-Pick disease, Tay Sachs disease, and Gaucher disease – are characterized by by increased levels of a particular type of sphingolipid.
There is no cure for these neural disorders and they are all fatal (in many cases, during childhood).
Spingolipids are the biological product of a chemical process that creates a protective layer on nerve cell membranes and ensures proper – and protective – cell signaling and are critical to optimal brain function.
The genesis of sphingolipids are long-chain – also known as sphingoid – bases that normally have a length of 18 carbons, although they can also have lengths of 16 or 20 carbons. The length of long-chain bases is determined by serine palmitoyltransferase (STP), a multiprotein enzyme.
In neural disorders like Niemann-Pick disease, Tay Sachs disease, and Gaucher disease, a mutation (known as Stellar) in one of the proteins that makes up STP creates an abnormally high number of 20 carbon long-chain bases, which dramatically interferes with sphingolipid metabolism.
This causes neurodegeneration to occur. In all these neural disorders, much of the neurodegeneration begins soon after birth.
In Tay Sachs disease, neurodegeneration of the brain and spinal cord begins at about six months of age. The average lifespan is four years.
Gaucher disease has three subtypes.
In Type 1 Gaucher disease, symptoms, which include anemia, bone deterioration, and liver and spleen impairment, are non-neurological and do not materialize until middle age. The average life expectancy for Type 1 is 68 years.
Type 2 and Type 3 Gaucher disease are both neuropathic forms of the disease. Neurodegenerative symptoms include abnormal eye movements, seizures, and systemic brain damage.
In Type 2 Gaucher disease, the onset of symptoms is within three to six months of age. Deterioration is rapid; the average life expectancy is about two years of age.
Type 3 Gaucher disease is a slower onset and involving version of Type 2. The average onset of neurological involvement is late childhood into adolescence. Life expectancy ranges from the mid-twenties to, in extremely rare cases, the early forties.
Niemann-Pick disease has four types: Type A, Type B, Type C1 and Type C2.
Niemann-Pick disease Type A occurs in infants. Symptoms include enlargement of the liver and spleen (around three months of age) and a failure to thrive during the first year of life. At one year, widespread damage to the lungs occurs, and there is a progressive loss of neurological and motor function.
Along with Tay Sachs disease, Niemann-Pick disease Type A also has a common eye deformity consistent with neurometabolic disease, known as a cherry spot, that occurs within the macula and is often what initially identifies the two neural disorders.
While most children born with Niemann-Pick disease Type A die in infancy, a few may live as long as four years.
Niemann-Pick disease Type B includes most of the same symptoms as Type A (motor skills are not usually affected), but the onset of symptoms is during adolescence. Most people with Niemann-Pick disease Type B survive into adulthood, but mortality rates climb dramatically between twenty and thirty years of age.
Niemann-Pick disease Type C (C1 and C2 are caused by different gene mutations, but the symptoms are the same) is characterized by severe liver disease, severe pulmonary infections, progressive neurodegeneration, and increasing difficulty with speech and swallowing that deteriorates completely over time.
The onset of Niemann-Pick disease Type C can be at any age, but it is most commonly seen by the age of five. The life expectancy with this type is under twenty years of age when symptoms appear in childhood. When symptoms appear later, the life expectancy is ten to twenty years after symptoms begin.
We humans are a very gullible bunch. We are also capable of the most incredible leaps of faith in tying the most disparate and thinly-threaded information together while we routinely disbelieve proven facts and credible information backed by proof, analysis, and critical thinking.
Why is that we go to the outermost reaches of implausible information to build our internal knowledgebases on instead of doing real, credible – yes, it takes time, it takes effort, it takes analysis, it takes critical thinking, it takes patience, and it takes commitment – research to understand the various kinds of dementa (Alzheimer’s is just one kind of dementia), to understand what the scientific process – and effects are – and to understand how we as caregivers can love and support our loved ones with honor and dignity?
Going Gentle Into That Good Night is a comprehensive resource for factual, well-researched, and practical information on dementias. The information is free for everybody. Yet routinely I see the most outlandish and untrue information on dementias on social media.
Silver bullet cures (there are no cures). Unproven links to other diseases based on an infinitesimally small test sample (no real scientist or pathologist would hang their careers on samplings this small to announce a finding). Claims that this or that “natural” thing will reverse or improve a brain already neurologically compromised.
It sounds wonderful. But it is misinformation, disinformation, and, in many cases, completely dishonest.
For a lot of these things, the motive is to get us to spend a lot of our hard-earned money on a pipe dream while the people getting rich on our backs are laughing all the way to the bank. For the other things, it is simply a matter of hacks or inferior scientists, doctors, etc. trying to get their 15 minutes of fame.
All at our expense and at the expense of our loved ones with dementias and Alzheimer’s Disease. Not only is there a monetary expense, but there is also an emotional expense, a psychological expense, and a physical expense.
All of these areas can be significantly drained and irreparably damaged in the process.
An example of this insanity in the pre-information age was in the widespread usage of mercury as a cure-all during the 18th and 19th centuries. Mercury, it turns out, is incredibly toxic and rapidly leads to premature death (Louisa May Alcott, author of Little Women, died an early death from mercury, which was prescribed for her various physical ailments, poisoning).
It is easy to think, “Duh!” now, but the same kind of misinformation, disinformation, and outright lies are even more rampant and accessible today because of technology.
If you want to believe something – even something unproven, outrageous, dead wrong, and possibly life-threatening – the internet offers you the backup and the “proof” you need to justify whatever it is you want to believe.
The internet is full of hacks. It is full of wannabes. It is full of misinformation, disinformation, and lies. About dementias. And about everything else.
Do not believe anything that you cannot prove yourself beyond a shadow of a doubt. Do not trust anything just because it looks like somebody credible (a doctor, perhaps) said it.
I implore you not to check your critical thinking, your BS meter (we all have one, I hope), your logic, your reason, and your common sense at the door when you enter the wild and wacky world of the internet.
Here’s the most important thing to remember. Most disinformation, misinformation, and outright lies have a tiny grain of truth in them. That is always the hook. Always.
However one grain of truth surrounded by countless grains of not truth still makes the information as a whole untrue. Do not fall for the hook because once you do, then you are moving as far and as fast away from the truth as possible.
An example related directly to dementias is the supposition that shows up over and over that Lyme Disease is the cause of Alzheimer’s Disease.
This is sensational disinformation and misinformation. A healthy dose of common sense with thoughtful, careful, and diligent research, analysis, and critical thinking would prove or disprove this bombshell claim.
Common sense brings the “5 in 5 brains” into focus. Five brains out of the millions of people who have had and who have some form of dementia is not a credible sampling of the population affected.
I could very easily go out and find five random people who have the same auburn hair that I do and declare that I have turned genetics upside down and found that auburn hair is a dominant trait (it is recessive).
This is common sense and logic and we must bring these to the table when we’re looking at any and all information. Applied to this graphic, we should automatically mistrust this information.
But that’s not enough to prove it wrong. We actually have to go and do some research. This microstudy was done by McDonald in 2006. The opening statement of the abstract tells us key information through which to view McDonald’s microstudy: “Here is hypothesized a truly revolutionary notion…”
A hypothesis is not fact. It is a theory, a guess, an imagination that remains to be proved or disproved. The infographic, then, presents the information as already being proved, which is misinformation.
That the study was done almost 10 years ago also raises the eyebrows of doubt because much has been done in the research and causes of dementias and Alzheimer’s Disease in those intervening years.
In fact, with some research on the possible link between Lyme Disease and Alzheimer’s Disease, we find a study from 2014 (eight years after McDonald’s microstudy) that definitively repudiates the existence of a link between the two diseases.
To not verify and prove anything and everything is not only lazy, but in many ways, ignorant. Why would we not want to get all the facts instead of trying to support some pet theory that we believe? I don’t understand that.
Too few of us, to our discredit, actually go through this process and that is what I am begging each of you and imploring each of you to do. Know why you know what you know. Know why you believe what you believe. Know why you do what you do.
Never, ever accept anybody else’s word for anything. Prove it. Disprove it. But never just accept it.
Ever. If not for ourselves, for our loved ones. They’ve entrusted their lives to us. We owe it to them to be rigorously honest and apply that everywhere in our lives and to not fall for gimmicks, misinformation, disinformation, and outright lies.
The cost of not doing this is high to everyone.
To us in terms of our character and our credibility (if we perpetuate disinformation, misinformation, and erroneous information, then we are leading people astray and away from the truth).
To our loved ones in terms of their care and their lives (we can cause much harm and much suffering by believing things that are not true and not proven).
A huge part of true love is the continuous hard work it requires us to put into living it, being it, showing it consistently and continually.
Is our love real or is it not? How do we know?
On top of the devastating neurological, physical, and emotional toll that dementias and Alzheimer’s Disease have on our loved ones, the cost of care – hospital equipment, adaptive devices, supplies, and medications – even when we as caregivers are carrying a fair share of that burden is often financially overwhelming.
Most costly, especially for our loved ones who depend on Medicare (and, hopefully, a Part B supplemental policy and a prescription plan), are the prescription medications used to help manage symptoms and behaviors associated with dementias and Alzheimer’s Disease.
Very few of these medications have generic equivalents, so there is no other option but to buy the Big Pharma patented – and outrageously expensive – medications.
When our loved ones with dementias and Alzheimer’s Disease who are covered by Medicare hit the “donut hole” of coverage, the prescription costs go through the roof because they are billed at full price.
However, there are options available for assistance with paying for these medications all year round.
I’ll summarize the options here:
A note from my own experience will save you a lot of time, aggravation, and trouble. Having a PCP or a geriatric psychiatrist deal with the pharmaceutical companies for assistance with patented medications will get the fastest and best results.
The pharmaceutical companies have applications for assistance that the PCP or geriatric psychiatrist will provide. You will have to provide income statements, Medicare expenses already paid, and other expenses related to care. Include everything!
The PCP or geriatric psychiatrist will submit the paperwork and if it is approved, the medication will be sent to them and dispensed from them. The good news is that once you’re in, you don’t have to redo the paperwork again.
Another thing to be aware of is that these programs are not designed just to assist the most economically-disadvantaged members of our society.
The middle-class, which is the largest segment of American society, is feeling the financial squeeze on all fronts more than any other group (and if we are taking prescription medication, we can use some of these resources too for financial assistance to help pay for them). Even though our loved ones with dementia and Alzheimer’s Disease may have pensions, Social Security, and Medicare coverage, the costs of living – and dying – are far outpacing what they have coming in each month.
So this is a potential lifeboat to keep them as financially solvent as possible, while ensuring that they have the medication they need.
When our loved ones with dementias and Alzheimer’s Disease reach the part of the journey through these neurological diseases where they are unable to handle their own financial and legal matters, we as caregivers have no option but to step in and act for them and in their best interests.
Here in the United States, there is an incomprehensible aversion to planning for the possibility of having to entrust our lives to someone else and for how we want to die.
It’s as though we have this national collective mentality that if we don’t think about it, then it won’t happen.
The bad news? No matter what, it’s still going to happen.
And someone is going to be left holding the bag – maybe the person we would have designated or maybe someone we don’t want making decisions for us – to decide for us.
If it’s a person we trust, then they have the agony of trying to figure out what’s best and what we would have wanted. This is especially agonizing when dealing with end-of-life issues.
Too many people in this position of not knowing what we want, because we refused to talk about it, prolong our suffering and run up needless bills in the process, simply delaying what would have been the inevitable outcome anyway.
If it’s a person we don’t trust, all bets are off. And it is not going to be pretty.
The time to prepare for both of these inevitables – unless we die early and truly unexpectedly (I can’t help but laugh every time I see an obituary for a really elderly person that says they died unexpectedly: suddenly, perhaps; unexpectedly, no) – is when we have the ability to and can make sure what we want to happen happens.
From the standpoint of appointing someone we trust to handle our financial and legal affairs (most of us do an okay job with medical powers of attorney, but even that gets ignored more than it should), a revocable living trust is probably the best and safest way to go.
The benefits of a revocable living trust are:
A revocable living trust is probably the easiest way to ensure what we want both in life if we can’t do it ourselves and in death after we’re gone.
However, it is of supreme importance to choose wisely and be absolutely convinced of the trustworthiness of the person we designate to be our trustee.
The bottom line? If we have any doubts as to whether we can trust someone completely, we do not choose them as our trustee.
It will not end well for us – in fact, it could end gruesomely and tragically – and all our careful planning will have been for nothing, to put it mildly.
But what if, as many Americans do, our loved ones with dementias and Alzheimer’s Disease reach the stage where they are not competent to handle their affairs without any legal documents in place?
There are two options, and by the time this is needed, it’s likely that the petitioner (us for our loved ones or our families for us) will need both of them granted.
Both options are very costly (much more expensive than the cost of powers of attorney and a revocable living trust), often take a long time to be granted, and, in many cases, set off a family war, which not only can delay a decision, but can also create irreparable rifts within the family.
One option is guardianship. Guardianships give the petitioner the legal authority to take physical care of the loved one who is incapacitated.
The process to obtaining guardianship begins with getting a professional letter confirming the person for whom guardianship is sought is incompetent to handle their own affairs.
That letter must be taken to an attorney to have a petition drawn up to submit with the letter to the court. The petitioner is responsible for all the attorney fees (general estimates are in the $2500 to $4000 range if the petition is uncontested) and court costs.
The court will decide – slowly – whether to grant the guardianship and the entire process can take several months at the very least.
The second option is a conservatorship. A conservatorship gives the petitioner the legal authority to handle financial and estate matters for of the loved one who is incapacitated.
A conservatorship has the same legal requirements and process as a guardianship and has the same potential problems as well. That’s why if a petitioner has no other choice but to pursue these options, it’s prudent to do both of them at the same time.
There is an additional requirement for the petitioner who is granted a conservatorship for a loved one who is incapacitated. The petitioner will have to file a detailed annual financial report for the estate to the court for review to ensure that the estate is being managed as the court sees fit.
If the petitions for guardianship and conservatorship are uncontested, they will take a much longer time and much, much more money to obtain than having an attorney draw up a revocable living trust that settles everything.
If the guardianship and conservatorship petitions are contested by other family members, it’s conceivable that the legal fight could outlast the loved one who is incapacitated and the amount of money spent to fund the fight would be outrageously high.
We may have no choice in these matters with our loved ones that we are caregivers for, but I urge each of us to consider taking care of these things for ourselves now for our potential caregivers.
We need to tell our families what we want, carewise, for longterm care and at the end of our lives. We need to choose and discuss with the person we want to ensure that our wishes are carried out. We need to get the legal paperwork done and keep one copy in our home safe or a safety deposit box at the bank and give the other copy to the person we designate to carry out our wishes.
We never know when time and chance are going to happen. Today is the day to prepare for that. Tomorrow may be too late.
Going Gentle Into That Good Night 