language

Spoiler alert: this post has nothing to do with my grandma. It’s not a sappy account of how I consider my residents to be my stand-in nonnas, either (though that is obviously the case). It is, however, in reference to a “role” I guess I could say I’ve happily assumed: One of my favorite residents constantly introduces me as her grandmother. I’ll get the occasional “daughter” or “neighbor,” but a solid 97% of the time I’m her grandma.

I joke about my laugh lines and how I have an old lady bedtime, but I can confidently say I don’t look like my 80-year-old love’s grandmother. Regardless of her reality orientation, there’s no way she would visually mistake me for her, as even if she believes herself to be ten years old, her grandma would not be pushing 30. Why does she call me that, then? Though demented, this seemingly offensive (wrinkle cream regimen starts TONIGHT) introduction has nothing to do with her memory; she has aphasia.

Aphasia refers to the inability to understand and formulate language due to impairments in specific neurological regions. In other words, it’s an f’ing nightmare. They say there are four communication modalities: auditory comprehension, verbal expression, reading & writing, and functional communication. Aphasia significantly impairs at least one at a time, and its symptoms range from the occasional difficulty finding words to losing the ability to speak, read, or write. However, it has zero impact on intelligence or episodic memory. Semantic memories, on the other hand, are compromised; while an aphasic individual will retain their experiences and remember life events, their comprehension of words, pictures, objects, and environmental stimuli is destroyed. This means that as the disease progresses, they lose not only the ability to name things, but also the meaning or conceptual knowledge of those things they’re trying to recall.

As if the above wasn’t scary enough, it’s important to understand that aphasia doesn’t always go hand-in-hand with dementia. Sadly, it’s way more common than one might imagine: according to Robin Straus of the Adler Aphasia Center, 1 in 250 people experience the disease. That’s more than Parkinson’s, Cerebral Palsy, and Muscular Dystrophy. It’s most often the result of a stroke, but any damage to the left hemisphere of the brain can cause aphasia – think brain tumors, traumatic brain injuries, and progressive neurological disorders like dementia itself. Oh, and there’s no age limit.

But if it’s not my laugh line wrinkle, how am I a grandma to my aphasic love?! If they can’t think of the correct name, nonnas with the disease may substitute a word with a related meaning, such as saying “wedding” for “ring” or “music thing” for “piano.” Her grandmother was an important person in her life – a source of comfort, joy, and love. Her brain can’t remember what to call me, but it knows we share a unique bond (cue my cliché tears..) and that I make her feel at ease. That’s evident not necessarily in the words I speak, for they’re not understood; it’s in the laughs, the playful shrieks, the overly affectionate hugs, and the kisses every morning. That her mind remembers, her heart won’t let her forget.

While she talks a mile a minute, my love –to be completely blunt– makes no sense at all. It’s extremely difficult for her to communicate her thoughts and to understand those of others that are relayed to her. Repeating something to her, even slowly and with clear enunciation, will make no difference; the issue does not lie in whether or not she hears you, but rather deep within the wiring of her brain. As Dr. Taylor so frankly put it:

“Their current dilemma continues to be to figure out just why I am not complying with their requests. Is it because it hasn’t registered in my brain? Is it because I can’t figure it out? Is it because I forgot it? Is it because I don’t believe them? Is it because I don’t want to do it?

Old strategies that worked for years – say it again and say it louder – just don’t work any more. I’m glad I’m not a caregiver who has to figure me out every day.”

– Dr. Taylor

Instead of asking the same question twice, try rephrasing it. Use short words and simple sentences, avoiding multipart requests. Do speak slowly and be patient when awaiting a response; the act of processing and replying to a demand may take much longer than what is natural to us. Use other signals besides spoken words: point, touch, write, etc. Most importantly, be empathetic and have patience. Don’t take things personally and expect the unexpected: even if your nonno’s never muttered a curse word in his life, you may be compelled to wash his mouth out with soap. Unfortunately, increased cursing just seems to be a quirk of language skill diseases. Don’t feel embarrassed or, worse, embarrass him; laugh about it! Just last week, my beloved “granddaughter” called me a skinny b*tch. Naturally, I took it as a compliment ;), as I most certainly do her usual nickname for me. I’ll gladly be her grandma any day. ❤

*note* This post was written prior to the extremely unfortunate passing of the love I mention above. It is dedicated to her and aphasia awareness. Please don’t hesitate to email me or comment below for more detailed information or additional resources. Our lives will be sadder and our days duller without you, D.

As I’m taking notes from work today, I can’t help but sneak a picture of where I’m writing:

I am so in love with this town (& with Italy in general)! Though I studied abroad in Rome and have been back since, I still find myself struggling with the language; when you don’t use it for a while, you definitely start to forget! Thank God for iPhone apps and Google translate :-O

Working with my loves, I’m realizing, requires me to learn and practice two languages: that of Northern Italy and of Alzheimer’s disease. The latter is more complex and multifaceted than even the most ridiculous Italian verb conjugations.

In one of many insightful essays, Dr. Taylor writes:

“If I call you “Mom” or “Dad,” I am probably not confusing you with my mom or dad; I know they are dead. I may be thinking about the feelings and behaviors I associate with mom and dad. I miss those feelings; I need them. It’s just that I so closely associate those feelings with my mom and dad that the words I use become interchangeable when I talk about them. I don’t take the time or I can’t or won’t make the distinction between the people and the feelings.”

Similarly, Dr. Robbins goes on to stress that:

“Almost always, though, what’s said in the moment does NOT reflect how the person with dementia has always thought.”

Not only are we listening to (and, in my case, translating) what’s being said, we must also attempt to decipher its true meaning. Much like learning Italian, this requires patience and practice coupled with both empathy and understanding.

My phone can help me hold a conversation, but not to interpret unspoken messages. Aside from the always-entertaining hand gestures, most of what I’ve had to learn in Italian is verbal/written. The language of Alzheimer’s, however, is often primarily unspoken.

According to Bob DeMarco, when spending time with his mom it’s important for him to “speak the local language.”

“Eventually I realized I was drowning my mother with too many words. Sometimes, all I needed to do was smile. Or put my arm around her shoulder and my head on her head. Instead of a long explanation about what we were going to do (like go to the bathroom before lunch), I’d stick out my hand and say, ‘Let’s go.’ And she’d come along willingly, even before asking, ‘Where are we going?’ To which I’d just smile and say, ‘To have fun.’”

In my experience, it’s the nonverbal that has been most powerful. It’s the smiling, hugging, kissing (often on the mouth 😐 why do Italian nonnas and nonnos LOVE to kiss on the mouth?!?!), and just being together that have sparked incredible responses and opened seemingly glued-shut doors. It’s the respect, patience, and empathy.. the looking up instead of talking down.. the face-to-face instead of over-the-shoulder.. these are what I’ve seen to brighten days and open flood gates.