a dignified life

Time Flies

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I cannot believe the post entitled “Conversational in Italian, Fluent in Pavarotti” was written over a year ago. As we wrapped up one of our awesome parties at Il Sogno last night (this one featured a belly dancer :-O), I can’t help but reflect on the truly remarkable effects music has on people. I just had to repost (while listening to Pavarotti, of course)!

Since I recently left the kennel ( </3 ), I’ve decided to update my resume to be sure it’s reflective of where I’m at now. I have a “Skills” section at the bottom where I mention that I’m “Conversational in Italian,” and I’m impatiently waiting for the day that I can confidently change it to “Fluent.” I probably have a solid 10 years before I’m close, so Conversational is staying for now. I am, however, tempted to include “Fluent in Pavarotti” below my subpar Italian skills, and I have my loves and this trip to thank for that.

According to Paula Spencer Scott:

“The arts have an amazing power to reach people with dementia. When rational language begins to erode, symbolic emotional communication remains. That is what art is, symbolic emotional communication – sharing a vision of the world through gestures, words, sounds, images. Shared communication of any kind can bring people suffering from loneliness and isolation into community.”

She goes on to specify that “lyrics can stay in the brain even after language skills are lost; music can be a real source of joy.” How nuts, right?! We’ve all of course experienced this to some degree – an old favorite pops up on shuffle and we’re able to excitedly recite every word. Songs often evoke memories, too. I always make playlists for my trips so that when I’m home, I can be reminded of that vacation and how it made me feel.

If it hasn’t been apparent already, I truly value and appreciate what Dr. Taylor writes in his essays (being that he is battling Alzheimer’s himself):

“Singing something, anything, from children’s songs to hymns, from the Hallelujah Chorus from Handel’s Messiah (I can still recall the first note for tenors) to any and all Beatles songs, helps me feel that I am feeling okay and, in fact, good.”

It’s no secret that music is an incredible therapeutic tool. My only dilemma initially was that I am not, in fact, a ninety-something year old nonna; I didn’t grow up here, I understand next to nothing when I hear different dialects, and the closest thing I’m familiar with to an old Italian song is “Dominick the Donkey.” While my site doesn’t offer formal music therapy, a few patients are avid (and loud) singers. I began to decipher as much of what they were belting out as I could, then searched Google for the rest of the lyrics and to find the title. The clouds parted and God presented Luciano Pavarotti, one of the most successful operatic tenors of all time. Thankfully for me, he’s covered almost every top hit amongst my audience.

Our day to day has changed. While not a music therapist, I am a self-proclaimed Pavarotti cover artist and enthusiast. My laptop speakers blare songs with all their might, and w e g o n u t s; we f’ing scream those lyrics, thanks in part to the advice of Dr. Taylor:

“It is best to sing out loud and loudly. Thinking about singing is like thinking about sex. It is much, much more satisfying if done with all of your body instead of just between your ears. It is much, much more satisfying if others can and do join in.”

What has this incorporation of music done besides wake our neighbors? It’s allowed us to let loose, have fun, and simply enjoy each other. A loud singer is a lot less aggravating to others if they themselves have joined in too. It has also, and most importantly, facilitated communication and elevated mood. There are nonnas who I actually believed to be unable to speak that have since blossomed into some of the most caring, outgoing, and affectionate patients that I have the pleasure of loving every day. One in particular hadn’t smiled or spoken once in the weeks that I’d known her; I had ignorantly assumed her to be either shy or too far cognitively impaired to converse. She is one of my most passionate (and vocal!) back-up singers today, and she does not stop hugging, kissing, or smiling.

I cannot forget my nonnos, some of whom can often be particularly cranky (am I the only person who adores cranky old men?!). One of my favorites enjoys sharing stories about his hometown (my Roma ❤ ) but becomes more forgetful and likely disinterested when in an unfavorable mood. Though not a singer himself, after our concerts he is without fail more cheerful and able to recall that which he had difficulty remembering only hours before. It is truly remarkable what music can do. Grazie Pavarotti ❤

*note: our fav https://www.youtube.com/watch?v=UNmT7UswM7E

You Don’t Live Here?

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After having spent this past weekend revisiting my beloved VV, I’ve been thinking a lot about the incredible people I encountered during the months I lived there last year. There were nonnos and nonnas I cared for, mentors that became friends, and landlords that made me feel beyond welcomed. In addition, there were acquaintances I’ll never forget. One in particular was the owner of a tiny newsstand I’d pass on my morning walk to the train station. We never actually had a conversation, but every single day without fail we’d smile and wave to one another.. we’d exchange a quick, warm “Buongiorno!” that I still think about frequently. No matter the weather or how busy he was, I made sure to stop as I passed until we’d both said our hellos. It sounds so silly, but it was the perfect start to my day; without so much as knowing his name, this friendly, compassionate nonno became a source of comfort and happiness – a man I truly looked forward to seeing as I began my commute to work. Naturally, I cried my eyes out when it was time to say goodbye (slash actually introduce myself :O ).

What was it about this stranger that touched me so deeply? How was our AM ritual even initiated? Why did I crouch down to make sure he saw my wave through the awning, and why did he look for me in the first place? The answer, I’ve determined: I have no idea. Perhaps I found comfort in the fact that he so enthusiastically greeted me, a foreigner who was completely alone and who didn’t even buy his newspapers. Maybe it was his smile and the warmth it exuded. Who knows? There’s not always an explanation as to why people make us feel the way that they do. This is especially true for those who have dementia:

“A rose is still a rose, and smells as sweet, even if you don’t know what that pretty pink fragrant thing that cheers you up is called.” – Surviving Alzheimer’s

I’ve quoted that excerpt before, but I’m even more in love with it now. Scott stresses that even after names and relations are lost, your presence itself remains a source of cheer, comfort, and de-stress. Six months have passed, and to say I adore my residents at Il Sogno is an understatement. From the moment I walk in the door, before I even put down my keys, I’m kneeling beside them at breakfast. I’m greeting them one at a time, playfully eyeing what’s on their plates. I’m complimenting their bouffants (do old ladies all sleep on their faces?! WHAT IS THEIR SECRET???) and kissing their cheeks.

Despite our encounters, I would confidently say that a solid 70% of them have no idea what my name is. No matter how much we interact, I’m pretty sure they’ve got no clue why I’m there. As I was reminded of this evening, I don’t think anyone knows where I live (“You’re driving home? You don’t live here in the building?” O Dio!). What I do know, however, is that our faces light up when we see each other.. that we laugh like crazy (often at my expense).. that we confide in each other, and we embrace like we’re old friends. As eagerly as I run to them in the morning, I know in my heart that they’re waiting for me.

“People with dementia are particularly attuned to the care partner’s tone of voice, facial expression, volume, and hand gestures. Body language counts! It is as if you are speaking to someone who doesn’t speak the same language as you – he or she is looking for cues and clues from the encounter and not relying completely on your spoken words.

The person may not understand your words and may not always recognize you, but he or she still recognizes the positive intent of a smile, a handshake, or even an inviting and open posture.” – A Dignified Life

My newsstand nonno and I did not speak the same language, so we obviously didn’t rely on spoken words. We did feed off each other’s compassion. We conveyed mutual excitement and met one another with kindness. I don’t know his name, I have no clue where he lives, and I’m not sure why he was so nice to me, but I will never forget him or how he made me feel. I hope the same holds true for my loves. ❤

Mi Senti?

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So, we know from past posts that my favorite Italian expression is the deceivingly complicated “Dimmi tutto.” The one that’s most ingrained in my mind, however, is more straightforward: “Mi senti?” Working with the elderly requires a unique set of skills. Patience, empathy, and compassion are important, but none are as crucial as a loud voice. (*note* a sense of humor is also essential.) One must master the art of deciphering verbal and nonverbal cues indicative of hearing loss and/or lost hearing aids. In addition to being heard, they must be understood.

Have you ever spoken to someone whose accent made them tough to follow? Or smiled & nodded when you had no idea what a person said, praying that they hadn’t asked a question? Better yet, have you asked “What?!” so many times that you feel bad and give up, eventually pretending to have gotten it? Whether hearing impaired or not, there’s a lot that goes into effectively conversing with one another. Throw in a little confusion and memory loss and things get full blown messy.

I recently spent about an hour sitting and chatting with a group of residents. I’m not always awarded such luxuries, but it was a Saturday and my manager-on-duty shift was long over. I was so pleasantly surprised by what went on: they told stories, shared complaints (none about the staff, obv <3), laughed with one another and truly seemed to enjoy themselves. Don’t get me wrong, this isn’t completely abnormal, but there were new, more timid residents in the group as well as two or three who aren’t particularly fond of each other. Things went so smoothly and I had such a good time that even by 7PM on a weekend, I didn’t want to leave.

What made this evening different? They could hear each other. I encouraged more loves to join our impromptu café party, but I otherwise stayed out of it. I did, however, intercept if anyone’s comments went unnoticed. I repeated what they’d said and made sure we weren’t talking over each other. For those harder of hearing, I used my body language and nonverbals to make things clear. When I was involved, I was truly, enthusiastically, passionately engaged, and it spoke volumes.

 “People with dementia are particularly attuned to the care partner’s tone of voice, facial expression, volume, and hand gestures. Body language counts! It is as if you are speaking to someone who doesn’t speak the same language as you – he or she is looking for cues and clues from the encounter and not relying completely on your spoken words. Examples of positive body language include smiles, offering a handshake, hugs, and standing tall with enthusiasm!” – A Dignified Life

When you don’t hear somebody, it’s frustrating.. it’s as though you’re wasting time. Not being heard is just as bad. I’m learning more and more that regardless of our age or mental status, understanding one another is exceptionally important: being on the same page in interactions, in relationships, and in life is crucial. When my loves don’t hear each other, miscommunications turn into arguments. Frustration leads to anger and confusion to sadness. It’s a downward spiral you can’t climb up from.. it ruins the whole day (well, some “days” shorter than others, but still). Save yourself the heartache and make your voice heard. Listen when you converse and make a true effort to be on the same page. You never know what kind of parties you’ll miss out on otherwise.

Dimmi Tutto

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When living in Northern Italy this past fall, I learned a new phrase I hadn’t remembered hearing on previous trips: dimmi tutto. It translates to “tell me everything,” but apparently it isn’t meant to be taken literally. 😐 I quickly realized this after my first conversation with my future boss, who’d really only wanted to know why I’d been stalking her for two weeks (does no one in Italy answer emails?!). In other words, she was prompting me to introduce myself and explain why I had reached out. “Umm.. mi chiamo Christina Candido.. Ho 26 anni..” I’m cracking up just thinking of how awkward I was!

While dimmi tutto doesn’t require a detailed response, Italians do love to chat about anything and everything. One of the reasons I’m so drawn to the elderly is that I, too, am super chatty; I could sit with them for hours and hear their stories. Eventually, though, many of my loves with Alzheimer’s disease lose the ability to communicate verbally. For some, the process is gradual and progressive; aphasia can accompany dementia and involves confusing language impairments. While one’s intelligence remains unaffected, they may no longer be capable of finding words, reading, writing, or even of speaking aloud.

So what happens then? What happens when a nonna can’t tell me to eat another plate of food? Or when a nonno can’t articulate which button down he prefers with that hat? More importantly, what if they’re in pain? With language deteriorated and perception clouded, things become excruciatingly (no pun intended) complex. According to Teepa Snow, renowned occupational therapist and dementia specialist, those suffering from the disease can no longer identify, describe, or isolate where the distress is coming from because wiring is missing in their brains. Once unable to convey distress verbally (effectively, at least), nonverbal cues become extremely important. Listening and observing are key components to recognizing a need for help:

“Early in the disease, the person probably can communicate feelings and problems in words; later, his or her behavior articulates what words cannot. If he is yelling or striking out, this can signify that he is in pain or has an infection and needs medical attention. Wandering can suggest boredom. Tears can suggest loneliness and the need for more activity and interaction with other people. When you stop, look, and listen, the person’s behaviors communicate many things.” – A Dignified Life

When deciphering messages from nonnos and nonnas, be patient and empathetic. Really listen to them and focus on what they’re longing to tell you, as changes in “normal” behaviors or appearances can be indicative of something detrimental going on beneath the surface. Assume that agitation is a symptom of something significant, as are restlessness and anxiety. Be suspicious when your love doesn’t want to get out of bed or participate in daily activities. If it seems like something’s up, get it checked out and explain the situation. In this case, take “dimmi tutto” literally.

*The following link is a clip of Teepa offering examples of nonverbal signs of pain. She offers tips for deciphering what is said from what is actually meant when a loved one has a difficult time communicating needs. https://www.youtube.com/watch?v=9kSjHtHSJCw

Soo This is Awkward…

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Though the iconic “American Girl in Italy” was shot over 60 years ago, its portrayal of Italian men is still alarmingly accurate. After a little research, I was ecstatic to read that it wasn’t at all staged; 29 year old Ruth Orkin couldn’t have captured a better photo if she tried! She had simply been “horsing around” with friend and fellow twenty-something female traveler Ninalee Craig. I feel like the three of us could have been best friends <3. The young studs in that photo are now likely well into their eighties, and while their health may have deteriorated, their feisty, flirtatious spirits have not.

While most nonnos on both my trips have been beyond respectful, some have been frisky and borderline inappropriate. Others have leaped over that border and proudly settled on the other side. Though I’ve gotten a kick out of a lot of them and been playful back with some, I’m not quick to be flattered; it’s not me, it’s them. 😐

“Many people with dementia still have sexual urges – and want to act on them. But with poor impulse control and self-censorship, and lacking the ability to read a social situation as they once did, these feelings can lead someone to behave in ways considered socially wrong.

Advances can range from suggestive comments to propositioning, and from flirtatious touches to groping.” Paula Spencer Scott

I’m neutral. I’m the young (is 27 still “young”?) American volunteer who they’ll likely never see again. No matter how inappropriate or unwarranted, their advances won’t hurt my feelings; I can address them properly and we’ll all move on. This is much easier said than done for a family member, friend, or caregiver, and understandably so!

“Know that for an adult child, this can be one of the more distressing problems to deal with – especially when you’re the target of the unwanted advances. The mix of shock, distaste, guilt, and confusion you may feel is absolutely normal. It’s the ultimate muddling of your social roles.” Paula Spencer Scott

It’s essential to keep in mind that the nonno or nonna (the ladies are guilty of it too!) isn’t thinking incest or expressing deep-rooted feelings; they truly believe you’re someone else. It has nothing to do with how you are or aren’t acting toward them, either – though I’m playful and outgoing, I certainly don’t solicit sexual advances from 90 year old men.

Since they’re sincerely confused and mistaken, try not to shame or embarrass them. When greeting your loved one, perhaps you can subtly specify what your relationship is. A translated personal example: “Good morning, Mr. Casoni! Your favorite American caregiver is here!” 😉 (AKA the only American caregiver, ma non fa niente) You can gently (but firmly) set a boundary, or even distract them by introducing a fresh activity or offering a snack to satisfy a different type of physical craving. I know I’d accept Nutella in place of making out. 😛

A Dignified Life

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I am too in love with this book! A Dignified Life: The Best Friends Approach to Alzheimer’s Care is absolutely incredible. I must admit that I am biased, though, as its suggestions nearly mirror my own therapeutic approach to geriatric caregiving. The authors describe a refreshing, respectful, mutually beneficial caregiver/patient relationship that fosters trust and relieves anxieties. Aside from being extremely well-written, its combination of anecdotes and recommendations offer hope and strengthen optimisim.