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.
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.
I was sitting in the office of an individual designated as an “essential” federal employee at mid-morning on November 14, 1995. We were meeting at the US Department of Health and Human Services, Health Resources and Services Administration main offices in the Parklawn Building in Rockville, MD.
My federally funded Evaluation and Technical Support Center for a HRSA Initiative on Implementing the zidovudine protocol for preventing HIV transmission from HIV-positive mother to her child during birth was meeting with 10 federal grantees the next day in Baltimore. The meeting was mandated by the HRSA funding agreements.
Each project had at least three staff in transit to Baltimore (most by air) for the meeting the next day. At least one representative of each project was a woman living with HIV/AIDS; this was mandated.
The bell rang at noon in the Parklawn Building. The loudspeakers had started squawking earlier reminding all non-essential employees that they must exit the building by noon. Guards came through the building reminding people to leave. It was eerie to be in the second-largest US federal office building with almost no other people around.
I met with the essential employee, the head of a very large program on HIV/AIDS treatment. She could not tell me whether to have the meeting the next day. While she could guarantee that the representatives from the projects would have their travel reimbursed she could not tell me whether the scheduled meeting rooms, scheduled food service, and other costs would be covered although she would allow me to pay for costs already agreed to through contracts with the hotel. She did note that we could not use use the meeting room we had paid for nor eat any of the food we had pre-paid. The meeting would no longer be a federal meeting. Everybody there was just a private citizen meeting because they wanted to be there after being stranded by having flown to a mandatory federal meeting that was cancelled without notice. No federal employee, however, could be at the meeting because they were not working and they were not allowed to go to any activity that could be construed as federal “work” since they might then demand payment for their time.
I had to tell this to about 50 attendees at 9 am on Wednesday morning. The Maryland Dept of Health agreed to let the group use space at their offices 15 or so blocks away. Everyone walked over there in freezing rain. Maryland made available a conference room that could seat about 12 comfortably, about 25 uncomfortably, and the rest squeezed in and stood. The State Director (part of the group) lent us her personal 10 cup Mr Coffee to brew coffee. In trying to make enough coffee for 50, I broke it, and when I returned to California, I sent her another one by FedEx because I was a little annoyed that she got very upset that I had dropped the $20 machine and had announced to 50 people that I was the reason there was no coffee.
After about an hour or so of chaos and having everybody totally upset — as they should have been — about having about 15 women with HIV (many with advanced stage AIDS) in an overheated claustrophobic facility along with another 35 people in an overheated claustrophobic facility, I decided that the company I owned would personally guarantee the costs for the meeting facilities and food that had already been paid — if the government asked for the money back from anyone because I had decided that those who had come to Baltimore in good faith could meet in the rooms already paid for and eat prepaid food that was going to be thrown out. As I recall this was probably close to $5,000 or more. Fortunately no one ever asked me for the money back and since I over-ran our budget by far more than $20,000 (which we never billed) in part because the feds had totally screwed up the process, that we were even. And, no woman with HIV had fainted or otherwise hurt herself during the meeting because we did not have healthy conditions.
The grantees were — as would be expected — totally pissed off. The initiative ran for several more years, but in a fairly “inefficient” way. Chaos. The feds went back to work after Thanksgiving, but then went out again for more than a month starting in mid-December when Newt Gingrich and Bill Clinton still would not do their jobs. When the budget was settled in mid-January, the government announced it would pay all of the federal employees for all days they had been sitting at home in Maryland and Virginia and the District playing in the snow and worrying about their personal finances.
A demotivated, angry workforce went back to work to deal with a number of demotivated, angry contractors and grantees. It wasn’t the same for another two years.
Obamacare was passed by a majority of the US Congress, all of whom had been elected by the majority of their constituents. It was signed into law by a President elected by the majority of the US electoral voters as specified in the Constitution. When the Constitutionality of Obamacare was challenged by those who did not like it, the majority of the Supreme Court Justices, each confirmed when appointed by a majority of the US Senate, decided that Obamacare was constitutional.
Each step of passing Obamacare into law was done according to the specifics of the US Constitution.
Those attempting to derail Obamacare by using certain procedural technicalities in ways never intended and just plain silly, are acting in opposition to the approved Affordable Care Act passed by the Congress and approved by the President and the Supreme Court according to the procedures specified in the US Constitution.
Are those in Congressional representatives holding the budget hostage Congressional “Leaders” or (in words attributed to Al Gore) “terrorists?”
Today, I hope that the US government will decide to “feed” those sitting around waiting for their US Congress and Executive Branch to meet their Constitutionally assigned responsibilities that the elected officials of the United States have sworn to uphold. Fortunately World War II vets in wheel chairs were allowed to look at the barricaded World War II memorial on the federal mall today (the barriers were lifted by Congress members in front of TV cameras); my further hope is that all of the veterans in VA hospitals get fed dinner tonight whether or not the TV crews are parked in front of the facilities.
Those elected officials who claim that their Tea Party is as much against “taxation without representation” as the founders were in 1776, obviously have not read the Constitution resulting from the actions in 1776. Thankfully, a majority of the Supreme Court justices and the President were in school that day.