Featured image: Illustration from Brian Froud and Alan Lee’s Faeries, depicting Mr. Despair and [Ms] Despondency.
When loved ones with dementia become tactless, rude, or offensive, people who have known them in better days will often observe that “X is no longer X.” Over the past months, “no-longer-Gerda” behavior has been creeping into my daily life more often and—it seems—to be of a more harmful kind. More and more, I say or do things that feels as if they have by-passed my rational judgement—they just come out of me without me first realizing that my behavior is hurtful or destructive or based on false perceptions. Afterwards, there is the shame of not having lived up to my sense of what reaction would have been kind or appropriate. (I rationally know that there is no shame attached to having a disease like dementia, but I do feel shame when I behave in ways I do not want to; I know I will feel it as long as I still have rationality left.) It’s not that, in my better days, I have always avoided tactlessness, rudeness, or offensiveness. In the past, though, it seemed that my bad behavior was more deliberate. I know that in many instances I could have controlled myself but chose not to. Now sometimes, though, I seem to slip into hurtful behavior without intending to do it or realizing ahead of time that I’m going to do it or, immediately after, that I did it.
Flying Lesson is part of the the Mad Sally series of paintings by Joy Adams. Note that the larger-than-life figure of the “madwoman” and her activities occupy most of the ground in the painting, while a bewildered-looking man fades into the distance on the left. Though Adams serves as the model for her own work, the Mad Sally paintings aren’t really of her. While the series is partly autobiographical, “Sally”—she says—rather “represent[s] a composite of English characters from [my] childhood during WWII [and constitutes] a theatrical narrative of [my] experiential observations.” Adams grew up outside of London with working class people—”bawdy, blowzy and laughing together in the face of adversity and hardship” (rochestercitynewspaper.com). While not intended to represent someone with dementia but rather people who are labeled “eccentric,” the “Sally” paintings point to a similarity between eccentrics and us dementers who have slipped into the personality-change stage: that is, both groups are living unencumbered by societal norms.
Although I could give many examples of recent regrettable behavior, in this post I will focus on only the worst one—the worst, because it was directed at Peter, my saintly caregiver, day-to-day best friend, and husband whom I deeply love. In the midst of a friendly chat while we were cleaning up after dinner, Peter made a remark about someone we know who had reached a huge achievement. I took his comment to be denigrating and I accusatorially said, “That’s a horrible thing to say.”
The amicable look disappeared from Peter’s face. A crush of hurt replaced it. I had seen that expression before—regrettably, I had made it show up many times in our life together. It usually happened when we were “discussing” something and it turned into an argument; or when I was tired or overwrought or angry about something. I would lash out at him instead of talking it over with him like a mature adult. I would usually know that what I was going to say would be hurtful but perversely decided that I would let it out anyway. This latest time, though, my “reprimand” happened when I was not (particularly) tired or overwrought and had not harbored any bad thoughts toward Peter or anyone else in the moments before. On the contrary, I was enjoying his companionship. So why did I suddenly turn into a waspish assumer-of-the-worst-about-him?
Speramus Collection The Face of Denial, Mark Mellon
One might say in my defense that, if one’s partner says something mean, why shouldn’t you address it? My ethical test for such things is whether I would have responded in the same way to one of my best girl friends in a similar situation. I know I would not have flown off the handle. I would have suspected irony, would have asked what she meant,or requested she clarify the remark. With Peter, though, I immediately interpreted the remark as rude and inappropriate. How could I not have given him the benefit of the doubt?
Opus Collection,The Gambler, Mark Mellon
Once I noticed the look on his face, however, I started wondering what I had done wrong. He must have seen my regret, so he kindly started explaining his comment. He reminded me of a long-ago insult that a then-friend-of-the-family had hurled at a member of our family when they had similarly achieved a huge, lifetime goal. As he spoke, the incident came back to me, but slowly, as if my mind reached for the memory in slow clicks. It seemed it took as long as dragging a reluctant dog outside on a snowy day rather than the seconds in which a peregrine falcon dropping at 242 mph reaches its prey, the latter being approximately equivalent to the speed of thought in healthy brains. Accordingly, it took a long time to recall the scene of the then-friend exercising her habit of shooting down achievements other than those of her immediate family. Once the memory had been unearthed, I realized that Peter had not been mean at all. He was enacting a family MEME, one of our private family in-jokes: he was quoting what the then-friend had said in the same ironic way that the adults of our family had done laughingly over the years when, for example, a politician or other public figure had achieved attention for something the opposing party did not approve of. I had forgotten all about this joke to the point of concluding that Peter had actually been nasty.
Opus Collection, Attempt at peace, Mark Mellon.
After piecing together the debris field of my remark, I of course apologized to Peter. The following days I could not stop regretting the incident. I felt awful about it. I decided to look for neurological/psychological explanations related to dementers’ loss of control over our statements and actions, the so-called “personality changes” that happens in dementia sooner or later. Such changes occur at different stages for different dementias: for example, in Alzheimer’s as well as frontotemporal dementia, one of the first symptoms is often sudden emotional changes. The inability to remember people, places, and things lead to depression, apathy, anxiety, and confusion. The resulting uncertainty of a person’s whole world—particularly her inability to detect lies, insincerity, or sarcasm—can result in a rapid change between contentedness and negative emotions like anger, grief, sadness, or jealousy. Such feelings can obliterate the person’s former ability to judge situations rationally, which leads to impulsive inappropriate behaviors. No wonder people who care for and love the person with dementia feel that X is no longer X!
Exile from the Shore of Reason, Mark Mellon.
In microvascular dementia, with which I was diagnosed a decade ago, one of the first noticeable effects is damage to one’s executive function, or the ability to follow a series of steps to efficiently complete a task. In order for the executive function to work, both your focus and organization must be intact. Until recently, my organizational skills still functioned well enough that I could keep material things like my closet in order and see that we are running out of certain kitchen staples. When it came to more abstract things, though, I could no longer organize: arranging a get-together, for example, was beyond my ability. From even before I was diagnosed, my most bothersome symptom was a lack of focus: my attention follows my eyes rather than the plan in my mind. While preparing food, I see a sweater I had left hanging over the back of the couch. I drop the cooking and take the sweater to my closet. While in there, I spy a clothing store bag with an item in it that I have to return. I check if the receipt is still there, put it all together, and take it to the front door when it will be a visual mnemonic when I leave the apartment. Fortunately the front door is right by the kitchen, so I notice the hissing of water boiling out of a pot onto the glowing hot stove plate.
Have Not Got Any Answers Other Than the Ones I Know Are Wrong, Mark Mellon (2011)
Another early sign of vascular dementia is “slow thinking” as well as slow walking). Until my recent incidents of unsociable behavior, I had not ascribed my difficulties to my thinking speed. When I reconsidered my earlier difficulties, it seemed in retrospect that, for example, my inability to track conversations involving more than two people could be ascribed to slow thinking: I would still be figuring out what one person said while the conversation was already moved on. During my misreading of Peter’s remark, though, the time going by felt long. It was almost as if I could feel rusty gears clicking along from one retrieved memory to the next. While writing this, I was again astounded that I could connect ideas in writing when doing the same is totally beyond me in conversation. Even though my writing speed has regressed to 2-4 weeks per post, In writing, a schema stays put on the screen while I fumble around for another one. Also, I have boundless time to go back and change my initial utterances, thereby avoiding the embarrassment that ill-conceived spoken utterances now frequently cause. Something else that came across in my research, is that different areas of one’s brain are responsible for reading, writing, and speech. How lucky am I that my writing is still hanging in!
Ask not What I Am Keep Away Silly Thing
While doing this research, I discovered another feature of dementia that helped me better understand my hurting of Peter: changes in a person’s sense of humor—together with losing the ability to detect lies or insincerity—is an early red flag of some dementias, particularly frontotemporal dementia. This loss is of course inevitable in all dementias, including my own. Had losing my sense of humor now caught up with me? When I thought about it, I realized that I had not been catching our kids’ or grandkid’s jokes for a while. Now I had not understood Peter’s formerly familiar joke. Attempting some possibly ill-timedhumor myself, I venture to say it is time for my “the die is cast” tattoo!
“The die is cast, “as Julius Caesar said after he crossed the river Rubicon with his army and set the Roman Civil War in motion.
Sigmund Freud set out a theory of how jokes work in his 1905 book, The Joke and Its Relation to the Unconscious. He recognized joking as a psychological, social, cognitive, and cultural phenomenon and suggested that science might use these categories in order to study its workings in the mind. Despite his prescience, neurologists only came around to studying humor for the past two decades. Given that I had in graduate school fallen for the incredible insights of Freud (as redeemed by psychoanalist /philosopher Jacues Lacan) about the role of social construction in unconscious thoughts and motivations, it pleased me that contemporary neuropsychological research was studying Freud’s ideas of jokes and “slips of the tongue” and confirmed the cultural nature of humor. In all cultures, humor is an essential, fundamental human behavior that promotes social functioning: it is used to make others feel good, gain intimacy, or help buffer stress. It follows that when one loses your sense of humor, your ability to negotiate social interactions deteriorates. To understand how the loss of understanding jokes affects social interactions, we must first know now catching a joke works (Seriously Funny: Humor is a Character Strength).
A concept underlying cognitive humor theories is that of a schema, or a mental structure that an individual uses to organize knowledge and guide cognitive processes and behavior. In the neuroscience article cited above, the author uses the Far Side cartoon below and the concept of “schema” to explain how “getting” a joke works. While I used the article’s stepwise analysis of the cartoon joke, I came to a different ha-ha! moment because the cartoon awakened schemas in my mind different from those presented in the article—mine were schemas cultivated during the years I spent reading and practicing feminist critical thinking.
Here are the steps required to get a joke:
First, you must be able to recognize two different schemas: the literal set-up (or context) of the joke—by noting the part of the Far Side cartoon that shows cows in the car, we activate our bovine schema: cows wander obliviously in fields, all the while producing milk from their big udders. The bovine sightseers are laughing, pointing, having fun. However, when we also see the part of the cartoon where (male) human beings looking discomfited walk or stand about the pasture, we detect a second schema, our knowledge of how humans act in a world that consists of both “cows” (female) and human “bulls”(stage 1).
Second, there are now two mental representations in my conscious mind: what my initial schema mentally represents about cows and their in-your-face display of their impressive secondary female characteristic; AND what I know in my human schema about the behavior of many men around busty women. Okay, that’s a stereotype, but you don’t have to be feminist to know it is based on a huge core of truth! (stage 2).
Finally, by inhibiting the representation “cows are just animals producing milk”, we allow the “wait, male humans are not usually the ones being gawked at by busty females” representation to prevail. The two representations are incongruous. You resolve the incongruity by recognizing that ”laughing cows ‘cat-calling’ discomfited human males” turns the tables of the trope about men catcalling women. Ha ha! You appreciate the humor in an initially implausible situation.(stage 3).
There are several reasons that we dementers sometimes don’t get the joke: remember our broken executive function? In the situation between Peter and me, his comment activated only one schema in my brain, the literal one. I accepted it at face value. I only completed one half of the first stage of understanding jokes! I never got to a second schema. I did not have an incongruity to resolve. In my mind, therefore, his remark was just not funny. He had said the “wrong” thing. In my mind, there was nothing the matter with my literal interpretation. Clearly, I judged, his ethics had lapsed and he made a cruel comment. in my broken mind, he had become a villain.
Sermon at High Noon, Mark Mellon (2011)
In a moving book that I have just read about a family who inherited the Alzheimer gene and of whom (among other horrors) one nuclear family lost their father and 5 out of 6 siblings to Alzheimer’s, a husband despairing husband tells a neurologist/researcher about how his dementing wife always blames him for not giving him information (which he had done), or being mean (which he hadn’t been), or that he was being unfaithful (which he hadn’t been) and so on, to which the the doctor replied, “I’m sorry to tell you that you’re going to have to be wrong most of the time in the years to come.”
Wandering the Plains of Space and Time Rise of Sirius, Mark Mellon, 2011
I don’t know about you, my readers, but just having worked through the reasons for my behavior has made me feel much better. On the other hand, it makes me feel worse, because it seems to me that if I can understand my problem in writing, I should be able to control my motor mouth in real life. If, for every conversation, I only had two “proofreaders” and the span of the over-two-weeks that it took me to write this post…. However I do have something better: a forgiving and understanding family and friends. Especially my daily companion, my husband Peter—you are my rock, my anchor, my joke-mate, for better or for worse.
Aetas Collection, No15, Mark Mellon