As the assault of the pandemic contiunues unabated, I find that I am getting increasingly numb to the causes and the effects. Some call this pandemic fatigue. Others call it trauma. Or overstimulation or shutdown on sensitivity to the continuing clatter. Yeah, I know a vaccine is supposed to save us, but I am so screwed by up by thoughts of what it means that 250,000 souls have been lost in 10 months, I casnnot even envision what it will feel like when 500,000 have died, a marker I think we will hit before the US population has all be vaccinated.
NUMB. No Understanding of the Many Battles.
Why do we fight about whether to wear a mask? The scientific research unequivocally shows masks save lives (including that of the wearer). Will we fight in a few months whether to get vaccinated? Probably so many will refuse that the overall protection for all of our citizens will be limited.
Why do we fight about dealing with the economy? We have far too many people crushed by unemployment. We can create millions of useful jobs that would improve the infrastructure of the country.
Why do we ignore the mental health and psychological processes injured by the ongoing pandemic? I feel crummy from the pandemic, your family and friends do, and you do. We should be able to agree it is a high priority to repair the damage the pandemic is doing to all of us. And, make even more jobs to achieve this.
Why are we so divided as a society? We have brutual political divisions affecting the healthcare and financial systems. We have racism, the denial of equal opportunity, gender and sexual orientation bias, and many other problems that are growing almost as fast as the virus spread.
I am trying hard to get over my own feelings of being NUMB. Maybe you should also try to stop being NUMB.
There are many kinds of dementia, but in many types, one huge change is that you lose partially or fully the ability control your facial expression, body posture, and other physical movements that indicate to another person how you feel, how attentive you are, sudden joy, fear, and especially empathy.
Since my diagnosis of FTD (and several years before that), I have heard statements like these from strangers, friends, and family members. Many people think I am angry, disinterested, or not listening to them.
“You never smile.”
“We’re waiting for you not to frown so we can take the selfie.”
“You don’t care what I think, all you do is look at me with a smirk on your face.”
Well, most of the time I am happy and/or neutral although I am sometimes depressed to varying degrees. I am usually interested in what most people are saying. Sometimes I have to break into conversations multiple times to say that I am confused. That confusion is, for me, more likely to indicate that I cannot decode your words because I am losing language skills, not because I was not paying attention to you. I slouch a lot, I often walk looking directly down because I easily trip over over cracks in the pavement and that sometimes leads to falls (I am currently typing using my left thumb on the spacebar because I broke my right thumb in a fall a month ago).
You cannot judge how I am feeling physically or mentally by looking at me unless you are part of my core family and see me very often and sometimes not even then.
That sucks.
Much of how we feel about people is based on their nonverbal gestures and facial expressions. Somebody like me who can barely smile gives people the impression they don’t like what is being said or are annoyed or distracted.
Most people infer negative things from my posture and face and staring that are simply not true.
This is probably a huge factor in how miscommunications often occur among persons with dementia and those they interact with. Even people who interact with me regularly and know my medical problems often misinterpret me.
The following mind model shows some issues in communicating with persons with dementia and possibly misinterpreting what they are thinking and feeling because they look at you with unintended disinterest, never smile, and look distracted. People have often misinterpreted my attempt to smile as smirking.
And if you are a person with dementia, look at yourself in the mirror or in recent photographs and see if you can make some improvements in facial expressions and posture. And if not, when you talking to people, especially friends and family, remind them that you not in complete control of your facial expressions and that sometimes when you think you are smiling or even grinning, the other person just sees a blank face. You can also make a joke out of the situation.
Apathy is often identified as a key symptom used for diagnostic and other purposes with dementia. Apathy seems to be most often discussed for those types of dementia-causing conditions often associated with young onset.
I believe it is possible to differentiate four types of states that are identified as “apathy.” This differentiation is quite important both for the administration of drugs and behavioral exercises to fight apathy and for planning social interactions and outings for the person with dementia if you are a #caregiver or a #family member.
The following mind map shows and explains four types of apathy that I would differentiate. Click on the diagram to expand it.
Type 1 is what I would call “observer identified apathy.” Caregivers, friends, doctors, and others see an individual who does not smile or seem to react to a positive environment and assume that the person is not experiencing emotion and would like to repeat the experiences often or see the same people again. These observations may have a quite different meanings for different individuals and in fact not represent apathy. For instance, I have little control of my non-verbal expressions (face muscle control and feedback is going, going, gone) and even though I feel happy and engaged you will rarely see a smile and when I try to “force one” for the iPhones, I usually end up making a rather bizarre expression. At social gatherings I often stand by myself just watching. I am neither apathetic nor a “stalker,” rather I often disengage in large groups because I can not selectively attend to individuals or the noise is too much for me to understand what is being said. I am trying to control incoming stimuli not to ignore them. On the fringes or in a quieter space with a small group of individuals I can appear quite engaged.
Try not to over-generalize when looking at a person with dementia and assuming that they are experiencing apathy. Something quite the opposite may be happening. And I may not be ignoring you because I feel apathy or do not like you. You may simply be standing in a noisy, chaotic part of the room.
Type 2 is what I would call “true” or “experienced apathy.” The person with dementia experiences the classic symptoms.
Type 3 apathy is mislabelled depression. Many of the symptoms of depression are also indicators of apathy but the underlying causes of the behaviors may be quite different for apathy and depression. It is important to determine if the person with dementia is actually experiencing depression rather than apathy (or both) as there are medicines available that seem to be able to help control symptoms of depression.
Type 4 apathy is what I would call “deliberate apathy.” When you see me ignoring situations you find enjoyable or engaging or demanding an emotional responsible, it may be assumed that I am experiencing apathy. I might tell you that you are right, I am, but it is because I chose to for this situation. At some point as dementia progresses one may need to make decisions about which activities and people and situations are the most important and should receive as much of the rapidly dwindling supply of mental energy as possible and which should be ignored so that energy can be conserved. These are deliberate decisions that people with dementia may need to make and then adopt as part of their lifestyle. My social circle is smaller because I have had to make choices about where to direct my energy and my “ignoring” someone is not a statement of disliking or lack of concern but rather that I think my family needs my time and energy more than they do. Things I used to think were fun are ones that I may ignore or avoid now not because I fail to think that they are fun but because I have decided that other things are more fun or enjoyable for other reasons and I should invest my limited time and energy into those.
Note that several or all of these types of apathy experience may be going on in a person with dementia at the same time. It is much more complicated than it looks.
This mind map is an enhanced version of a mind map I first published about a year ago. As is well recognized in the literature and discussed previously on this web site, individuals experience the progression of dementia in a number of ways depending upon the specific underlying disease or condition that causes the dementia symptoms to appear, existing psychological resilience factors independent of the neurological issues, and one’s psychological and physical resources.
You CANNOT diagnose yourself as having cognitive decline, cognitive impairment, or dementia from the information in the mind map. People without neurological OR psychological illness, problems, and issues may experience these feelings.
The map does provide an overview of some of the feelings and views that individuals whose cognitive health is declining may feel.
Back in 2012, I published a mind map on this blog suggesting that giving people one chance to learn (as in, you only get one taxpayer-subsidized educational opportunity) or to receive free treatment for drug abuse (as in, if you can’t quit the first time you are morally undeserving because you do not have the moral strength) or to receive specialized behaviorally-related healthcare (as in, you let yourself get fat or nicotine-dependent or out-of-shape so you pay the consequences) is an obscene abuse of other individuals,
It’s just as true now as it was then. I know more about mind mapping now and am even more irritated by those who want to balance the budget by not helping others enough, or even at all. So I thought I would revise my mind map and make this a post a lot more angry that we do not give people second (or even eighteenth chances).
Show me a drug abuse treatment provider who says you can go through treatment one time and it will “stick” and I’ll show you a snake oil salesperson who is trying to sell services to 18 year old entertainment industry billionaires surrounded by a media feeding frenzy. Do you really want to deny additional free education to someone who realizes in their 30s or after going to prison or after achieving a stabilized life without drugs or while serving our country in the Armed Services that they need more education to get good jobs and be successful and much better citizens? Mental health services should not be denied or limited to tossing people pills because someone lost the genetic lottery and has a life-time disease or experienced trauma (like a rape victim or maybe somebody unlucky enough to have lived in an earthquake or hurricane zone or in a dangerous neighborhood or in an Armed Services encampment in Afghanistan, Iraq, or Vietmam).
Enough said. The picture will tell more than 100,000 words ever could. And if one fails after 18 chances?
Well, there’s always a 19th chance or a 36th chance waiting. [And a special ring in hell waiting for those who would only offer people one chance at happiness or productivity or health. Or the politicians who supported this position to get (re)elected.] Oh, and if you were one who denied others a second chance, you have a second chance to act in a more moral and supportive way and give others that second or 18th chance.
Click on the image to expand. Then think about whether we should invest in people and families or in creating the wealthiest uber-class in the history of the United States?
The Research by Google Era (rivaling such earlier eras as the Babylonian Empire, the Empire of Alexander, the Roman Empire, the Middle Ages Papacy, the Incan Era, the British Commonwealth, the American Experiment in Democracy, and the forthcoming Intergalactic Federation) is here.
I think the Research by Google Era is the most “important” one yet.
Go ahead, Google it. How many minorities voted for Obama in 2008? How many times was Bill Clinton sued for “inappropriate” behavior toward female subordinates? How much money did Ghaddafi and family steal from the people of Libya? How many books are contained in the New York Public Library? What is the net worth of Bill and Melinda Gates? Their Foundation? What do they pay the Executive Director of their Foundation? Who should be credited for the “discovery” of the structure of DNA (this one is very complicated; not the DNA model but the politics about who would be credited)? How much did Mitt Romney pay in taxes? Has Mitt ever been audited by the IRS?
Think you know how many Christians, Muslims, and others are in the population of the world? Google it. Now compare the ESTIMATES from the top sources that come out of the search engine. Hhmmm. Kind of hard to tell what percentage of the world’s population is Christian, Muslim, or some other religion isn’t? [I do not hold anyone accountable for knowing the “correct” number of Jews in the world as Jews, to this very minute, are still trying to figure out who is a Jew and who gets a free pass to Israeli citizenship. Nobody has any idea how to count Russians forced to abandon Judaism during the era of the Soviet Union or Jewish dads who married a woman who is not Jewish. It goes on and on. Somehow, I suspect that if I knew as much about Islam and “Chinese traditional religion” (under the Chinese communists) as I do about Judaism and its politics, I’d be just as sure there is little consensus on basic number counts.]
Think counting religions is hard? Try getting data on the prevalence and incidence of health issues-problems.
It makes my head spin every night when I see 99% of the TV reporters struggling to explain the error of a survey. (They use several different erroneous explanations and once in a while somebody gets it correct.) What if we were to also hold them accountable for knowing whether the information they cite is valid, reliable, biased, consistent. Wow. And I haven’t started to spout equations yet. I watch them Google for data while they are on TV and the results are often so ludicrous that they should cut power at the broadcasting tower. Wait until the lawyers figure out that they can sue for incorrect data as the result of a search and win large judgments. Maybe they will even stop suing medical doctors.
Recently a college student was in the news because he plagiarized a post on a blog and copy and pasted it onto his class-assignment blog. Along the way he changed a numbered list to a text list (presumably by pushing one key in Microsoft Word or Pages). Did he plagiarize from a world expert, someone famous, his professor? Nope. He plagiarized from an 11-year-old boy. Presumably Google helped him identify the 11-year-old as the source of the definitive information on poultry farming.
OK boys and girls. Google does not tell you a number or a conclusion or an interpretation or whether a calculation is correct or incorrect. All it tells you is that the publisher of the information on the Internet knows how to get the search engine(s) to go to that site for information on various topics. If all you do is take the data from Google and cut and paste and reformat it the term “research” does not fit. Google itself states that as their lawyers have instructed them to tell you not to trust the data uncovered by Google.
These days, if I were to believe the bio statements in Twitter and Facebook and Linked profiles, I think that it is reasonable to conclude that there are now more people working to trick Google into citing them and their advertising-laden web sites (these are the practitioners of search engine optimization, an arcane field that seems to involve a boiling pot, wand, broom, and common spices available at Walmart) as a definitive source of information than there are people working on creating valid, reliable, and original information and other data.
The Google Era for research. Don’t get too used to it. The empire will soon fall down.
And yes, apparently an 11-year-old can trick Google (and a college student) into thinking he is more of an authority on poultry farming than the US Department of Agriculture or any university agricultural professor or any science writer at a major newspaper. And yes, both the sixth-grader and the college student failed to mention anything about inhumane poultry production practices, genetically engineered turkeys and chickens, and the use of antibiotics in over crowded production areas. Guess Google did not tell them to write that. Or think that such problems are ones worth thinking about. That’s OK if you are in sixth grade, although it is kind of sloppy. College? Lucky for him that pro football does not care about chickens.
