Dignity in dementia

I originally titled this post Dignity of Dementia, but that did not quite sound right, as the disease itself has no dignity; quite the opposite, in fact. For my mom, who was diagnosed with dementia 2 years ago (when she was 77 years old), it has been in many ways manifestly undignified. Her character has been transformed: previously, she was loud, gregarious, and displayed a zest for life. When I would be depressed, perhaps because of a recent breakup, she would remind me not to forget “la vita è bella” (life is beautiful), which was her simple Italian way of saying it is precious and should not be wasted, including over girls who were not suitable for me. She had intense emotions, good and bad. When angry, it was often to a degree that I found frightening; when happy, often over the simplest things like a family get-together, the joy was that of the pure happiness of a child getting his or her birthday or Christmas presents. She frequently enjoyed going out for shopping, to visit friends or family, or simply to go for a walk.

Now, that is all gone. Emotionally, she seems inert. Although often smiling, it does not seem to be directed at any object or event; rather, it is accompanied by a blank stare, and a part of me thinks it is produced by the medication rather than as a reaction to her surroundings or to happy thoughts that correspond to reality. The loud, gregarious, and vocal woman of only a few years ago is now mostly silent, and never takes the initiative to say or do anything. She’ll respond yes or no to a question, but this too is unconnected to reality. For example, if I ask “hai mangiato” (did you eat), she says yes even though she may not have eaten at all. The outgoing lady who jumped at the possibility to have a coffee with friends or family now sits on the couch, and will not move unless someone guides her to the bathroom, bedroom, or to the main entrance of the house. 

On the other hand, in this lamentable state, I have unexpectedly discovered a dignity which is not unrelated to the disease. One is her relationship with her partner of 40 years, Sergio, who is 91 and who remains mostly cognitively lucid even though he is physically frail. I was a little boy when they began their relationship and have no memories of any friction; in fact, pictures from that period indicate that they were quite happy. However, I do have vivid memories of the late 2010s and early 2020s, and they were constantly fighting, mainly because my mom was not happy with him. One complaint was that he drank too much; others were that, when he drank, he would annoyingly repeat the same thing over and over again. I recall several Christmases when we were all at the table—me, my brothers, my mom and Sergio—and she would have an expression of deep disgust about him. Many long-term couples, of course, experience this, but in my mom’s case, it seemed, consistent with her character, to be of an intensity that made me question how long they could stay together. Moreover, they economically depended on each other, and so it appeared that my mom was being forced by circumstances beyond her control to be in a profoundly unhappy relationship. 

That conflict between my mom and Sergio has also disappeared with the onset of her dementia. Completely unexpectedly, I have observed in the last two years a rekindling of their romantic love. I am often overseas, and when I go to Toronto for Christmas or over the summer, I stay with my mom and Sergio and have witnessed them cuddling in bed several times. When my mom leaves the house for an appointment, they kiss on the lips to say goodbye. This romance is occurring even while Sergio is doing decidedly unromantic things, like accompanying her to the toilet or helping to change her diapers. The age difference between them—she’s in her late 70s, he’s in his early 90s—makes this even more odd. It appears that the dementia has changed my mom’s emotional responses but in a way that leaves space for the kind of romantic behaviours—cuddling, kissing on the lips, and who knows what else when I am not there—that one expects among much younger couples.

Another occurrence that can conceivably connect the noun “dignified” to dementia is related to the death of my youngest brother, my mom’s youngest son, in September 2026. Had this tragedy happened before my mom’s illness, her reaction would likely have been extreme, given the intensity of her emotional reactions, good and bad, to other things in life. He was the baby of the family, the cutest, and he looked just like her—the structure of their faces, skin, and hair was almost identical. He also was the least mature, and therefore the most childlike among four brothers, and so her motherly instinct for protection and nourishment perhaps led her to be far more invested in him. I was not there when the news was given to her that he died, but my older brother and aunt explained to me that she understood, but after 5 minutes or so, seemed to have forgotten. When I travelled to Toronto to attend the funeral (we decided that mom would not attend), I stayed with my mom and Sergio, and in the moments leading up to my arrival to their house from the airport, I was terrified of seeing her because I was expecting to see the “normal” reaction of a mother who had lost a son. To my great surprise and bewilderment, when we encountered and embraced, she did not mention it at all, and so neither did I. Over the subsequent days (I stayed with them for a week), not once was it mentioned, and she seemed to be completely unaware of the tragedy. For me, this was a great relief. Even more, in a strange sense, it made me grateful that this tragedy happened when my mom had dementia rather than before, when she would have had to deal with it like a “normal” person. 

Hence the title of this post, Dignity in Dementia, which refers to some experiences of living with the disease that are better than the alternatives without it. Of course, I would prefer that this illness was curable, and that my mom could recover her previous outgoing, gregarious, emotionally intense self. It would be far preferable if she did not need assistance with the most basic tasks, such as going to the toilet, washing, or dressing. Moreover, a cure for dementia would offer hope to millions of families who must suffer because of it, and for the present generations who are terrified of old age in part because of the indignities associated with the disease. But in my mom’s case, the story is more complex. Her rekindled love affair with her long-time partner and her unnaturally muted reaction to the death of her son indicate that tiny but significant unexpected miracles can occur, including, evidently, while living with dementia. 

Progress on Mandarin: Beginning HSK 6

One of the more remarkable experiences over the past several years is learning Mandarin. I have documented the various stages of this journey here and here, and in this post, I will recount my latest accomplishment, namely, completing HSK 5 and beginning HSK 6, which places me squarely in the beginning of the advanced level.

People often use the term “fluent” to describe their language ability; in my view, this is vague and imprecise, as it means different things to different people. For some, it refers to the capacity to communicate effectively in simple but necessary interactions such as eating at a restaurant, taking a cab, or ordering a service, which is often sufficient for foreigners living in the country where the language is spoken. For others, including me, fluency rather means the capacity to effectively communicate about most conversational topics. But here, too, the definition lacks precision. For example, even in my native languages, English and Italian, I sometimes struggle to speak about topics I am unfamiliar with, but that my interlocutor knows well. Here, the lack of fluency comes from the lack of knowledge about the subject rather than language per say.

The spectrum of beginner, intermediate, and advanced, I think, is more helpful in capturing the various levels of a skill, including language, and the HSK system for learning Mandarin is structured around these differences.  It also recognizes that there are importance variations within them. For example, absolute beginners know basically nothing, while simply “beginners” already have basic vocabulary and can structure simple sentences. Ditto for intermediate and advanced. Thus, beginning HSK 6 places me at the end of intermediate; in other words, I am still quite far from being at the most advanced level. In fact, at the pace of my learning, it would probably take another two years to get there.

More concretely, what does this level mean in terms of actual capability? I have now lost count on the number of characters I have memorized, but my closest approximation is around 1000. This means that I can read Mandarin if it is on a topic I am familiar with. For example, many of the lessons with my teacher are on technological change (internet, smartphones, AI, etc). Now, if I read content on that topic, I can recognize between 65% and 85% of the characters, and can therefore extract the overall meaning of the text despite there being a sizable number of unfamiliar words. The same applies to topics related to economics or finance, which also are a significant portion of HSK 5 level lessons. To be fully literate in Chinese, it is said, one must know the 1500 characters that are used in 90% of text; I’m almost there, and I estimate that by the end of 2027, when I turn 50 years old, I will achieve that objective. 

Another concrete manifestation of HSK 6 is that, when communicating in Chinese, I more and more use Chinese grammatical and syntactical structures rather than, as is the case at earlier levels, using sentence structures that represent direct translations from the native language, a process which emerges from the tendency to think in the native language and then directly translate the vocabulary. Doing so can work in the sense that the listener understands, but it nonetheless is indicative of beginner or intermediate levels. For example, in English, when it is said “I cannot do this”, the direct translation in Mandarin is 我不可以做 (wo bu ke yi zuo); when used, native Mandarin speakers will understand, but in actual Chinese, this kind of meaning is communicated differently depending on context. For example, the Chinese will often say 我做不到; the actual sequential meaning of those characters is “I do can’t done”, and the syntactical meaning directly translated to English is “I can’t/didn’t do it”; or they will say 我做不了; here the sequential meaning of the characters is “I do not unable,” but which actually means “I can’t do it because I do not have the capability to.” Progressing to advanced, language learners more and more communicate using actual Chinese structures that do not have exact equivalents in other languages, and this occurs because one thinks less and less first in the native language, directly translates, and then speaks. Rather, communication has more of an automatic character; structure and meaning are processed independently of the native language and therefore more closely approximate how native speakers communicate. 

HSK 6 level also means, of course, that I can speak about more advanced and abstract topics, including history, politics, culture, economics, and health. This capability is not unique to HSK 6; at the HSK 5 level I could already do this, but often with difficulty because at times I lacked the vocabulary to convey what I wanted to say, and made many mistakes in vocabulary and structure. Now, I can speak about these subjects with more depth and nuance while making fewer mistakes, and so, on this measure, it is a question of degree, not of kind. I am assuming that at the most advanced level, therefore, I will be able to speak about all these subjects while hardly making any errors, and rarely struggling with vocabulary. 

Despite reaching this advanced level, I still find myself in the odd situation, common among language learners, of fumbling simple words. For example, the other day, I had a lesson with my teacher, and the subject was related to biology as a science, and relatively complex concepts were employed during the conversation. Later in the day, my landlord came to do some repairs in the bathroom, and I was able to communicate with her smoothly until I asked her about the previous tenant and mixed up the very simple words “rent” and “tenant.” She understood my meaning, and the mistake did not impede our communication, but it reminded me of this tendency, which I experienced when I was in Paris studying French—as I reached the advanced level, there were days when I would use French to speak about a complex topic related to politics, history, or finance, and the very same day I would fumble simple words in some ordinary interaction with the staff at the university dormitory. Importantly, I can also fumble simple words in English and Italian if the situation is out of the ordinary, or refers to simple objects I have not thought about in a long time. Therefore, it seems that this is inevitable in any language, regardless of the level. That’s why it is so important to live at least for a period of time in the country where the language one is learning is spoken; these random day-to-day interactions with native speakers often require and therefore force us to learn simple vocabulary or expressions that are not acquired in a textbook or during class.