Hi, This is My Grandmother!

August 31, 2016September 2, 2016 ccandido1 Passion adler aphasia center, alzheimer's from the inside out, aphasia, brain, caregiver, caregiving, dementia, grandma, grandmother, language, left hemisphere, nonna, richard taylor, the 36 hour day

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.

Kiss Me Like You Mean It

March 31, 2016June 1, 2016 ccandido1 Passion affection, alzheimer's, assisted living, caregiver, caregiving, dementia, endalz, nonna, nonni, nonno, touch

Full disclosure: I am not a PDA kind of girl. The above title is actually a direct (and frequently used) quote from a college boyfriend who was contrarily very into public displays of affection. He was super huggy and kissy regardless of where we were or who was around, and the fact that I wasn’t drove him nuts; a quick peck to appease him was clearly insufficient, hence the “kiss me like you mean it.” Don’t get me wrong, behind closed doors is a completely different story – I am beyond affectionate, playful, and even huggy-kissy. There are only two instances in which you’ll witness that side of me in public, however: with dogs (surprise, surprise 😉 ) and with my loves.

I am a huge advocate for touch. Numerous studies have proven that it’s not only essential for our development, it is also necessary for us to grow, learn, and literally survive and thrive. From infancy, touch is used to both communicate and to heal; a loving caress releases oxytocin and instantaneously boosts one’s mood, strengthens the immune system, and reduces stress. It’s not one-sided, either: there is evidence that the person doing the touching gets just as much benefit as he or she being touched. Incorporating even the simplest pats with other forms of communication increases connectedness, improves attitudes, and calms nerves. We are biologically wired to the need to connect with others on a basic physical level, and it’s something we don’t grow out of.

I’m not alone in being anti-PDA; we are a seriously touch-phobic society. The resultant touch deprivation in the elderly is alarming, especially for those who are frail or demented. Such deficiency leads to feelings of isolation, anxiety, poor trust in caregivers, a greater decrease in sensory awareness, and insecurity – the last thing they f’ing need. As if dementia didn’t leave one feeling frightened and alone enough, our lack of intimacy just kicks a nonna while she’s down, as to deny it is to deprive her of one of life’s greatest joys and deepest comforts.

It’s not just our nonnos we’re depriving, either: a study from the 1960s looked at café conversations all over the world. In France, friends touched each other 110 times per hour. Puerto Ricans beat them by 70 – a whopping 180 touches were recorded in the span of 60 minutes. In the US? Twice. In “bursts of enthusiasm,” we touched each other twice. 😐

Touch is the universal language of compassion. When words are no longer understood, there is no better substitute than a gentle hug or holding hands. In old age especially, the need for physical affection is more powerful than ever, for it is one of the only sensuous experience that remains. It is one of the few persisting methods of communicating with a nonna of limited cognitive function, and its effects are both physically and emotionally favorable. In a study that examined the impact of touch on appetite in picky elderly eaters, all participants had a significant increase in caloric intake when given a gentle touch and spoken to during mealtime. Additionally, a study on dementia patients proved that touch is calming; all residents who received hand massages presented significantly less agitated than those who did not.

Sources of proof are endless; there is no question that affection is insanely beneficial to seniors (and to the rest of us!). How we choose to implement it in our daily practice is subjective. In my own experiences, I have found that while being huggy-kissy with boys makes my eyes roll, doing so with my loves is invaluable. I greet nearly every resident with a kiss.. I don’t care if they’ve got half their lunch on their lap or if they’ve had a cold for days, I’m wrapping my arms around them and kissing their cheeks (don’t worry Dad, I wash my hands). If a nonno’s in a wheelchair, I crouch beside him and rest my hand on his knee. I’ll walk arm-in-arm with nonnas and cozy up on the edge of their recliner when we rest. I’ll sit right on that hospital bed, my fingers locked with theirs, regardless of cognizance or how tightly they grasp back. If there are tears (God, I hate when there are tears), I softly wipe them dry. I kiss them like I mean it, and honestly, the impact is immeasurable.

You Don’t Live Here?

August 21, 2015August 21, 2015 ccandido1 Passion a dignified life, alzheimer's, american girl in italy, dementia, forgetful, newsstand, nonna, nonno, paula spencer scott, surviving alzheimer's

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. ❤

Un’amore Così Grande

February 9, 2015February 9, 2015 ccandido1 Passion alzheimer's, amore, assisted living, dementia, grab bag, love, nonna, nonno, reminiscence, reminiscence therapy, un'amore così grande

Some favorite couples at il Rifugio ❤

Last week, I was able to play my favorite reminiscence grab bag game again. I offered a workshop on “Keeping Your Mind Strong” to some loves at an assisted living facility and we had an awesome time. Though I didn’t necessarily hear any super-insightful responses like I’ve written about before, there was one nonna who really got me thinking. One of the prompts is “greatest role model.” When reading it aloud, I offered examples: a parent, a mentor, a former teacher. The nonna who’d picked this one, however, specified that her greatest role model had been her husband. Davvero?!

Amongst the countless things we learn from elders, it’s been my experience that love is of the most profound. To be clear: unless I’m crazy about you, I am not a lovey-dovey person. The word “relationship” gives me anxiety. I am the epitome of Humphrey Bogart in Casablanca when he replies “I never make plans that far ahead” to Madeline LeBeau’s “Will I see you tonight?” I can tell you with confidence that I am not writing this post as a sappy 20-something girl whose five-year plan is to find a husband and start a family.

That being said, the love these nonnos and nonnas have shown me blows my cynicism to pieces. It floors me. I, like everyone else, have a general idea of what I want and what I look for in a partner; I’ve got the standard mental checklist that I refer to and that changes as I grow. While some criteria remain, I’ve tweaked or eliminated others. Does he need to let Max sleep in bed with us? Yes. Will he have to be as obsessed with traveling? No. One condition that persists: he has to be there. Like, really be there. Not in the sense that he’s breathing down my neck; I mean I have to know that this guy would stand by my side through thick and thin, and that I would proudly, without hesitation do the same for him.

I’m cynical, but now I’m spoiled. I’ve seen a love that withstands both physical and intellectual decay – the kind of crumbling that leads to pureed meals & empty stares, to alarming confusion & hurtful claims, and to incontinence & immobility. It’s this love that plows through hurdles and persists. The man who’d talk to me despite my silence, who’d care for me without applause, who’d lie beside me on my bathroom floor to ease my pain – he would be my role model, and me [hopefully] his.

We Need to Talk…

January 27, 2015 ccandido1 Passion a partial view, alzheimer's, caregiver, caregiving, cary henderson, chat, chitchat, dementia, nonna, nonno, senior helpers, talk

Last week, I got a call at work from a concerned nonna inquiring about our services. She explained that her husband is in the earlier stages of Alzheimer’s, but that it’s difficult for her to talk to her friends about his condition; not only can they not relate, they’re skeptical about what she describes. Though he’s been getting lost, taking four days’ worth of meds in one pop, and hiding keys in the freezer, in social situations, this same nonno shines. He’s able to chat with acquaintances and is the life of the party.

This may sound surprising but it’s actually not uncommon at all. We often hear only of the losses associated with Alzheimer’s disease and are therefore unfamiliar with what’s preserved. Early on especially, the right side of the brain is left relatively untouched; while one’s reality orientation, impulse control, and eyesight are diminishing, their ability to engage in social chitchat is intact. In addition, they hold on to rhythm and music and (uh oh!) curse words, which is why your angel of a nonna may come out with things that would have otherwise appalled her.

Pretty interesting, vero? When I lived and volunteered at il Rifugio three years ago, one of my loves used to always say things like, “Look at you. I remember when you were a tiny baby! How’s your mother? Everybody good at home?” She’d even call other nonnas over to revel in how big I’d gotten. I’d obviously never seen this lady before, but I was more than happy to laugh with her about my chunky high school years and how protective my crazy brothers are.

I had countless conversations like this in Treviso, too, and also since I’ve been home with my new loves at Senior Helpers – one is even convinced that my boss is my dad :-O . Could I correct them and specify that we’ve just met? Or skip the small talk and get down to business? I guess, but why the f would I want to do that? Recently, I visited an Italian-speaking nonna who we care for five days a week. I was obviously ecstatic to meet her. After sitting at her kitchen table for a little while, she asked me why I had come by. When I responded with, “Perche no? Just to see you and spend time together,” she actually cried she was so happy.

Cary Henderson, a former history professor who suffered from Alzheimer’s disease and recorded his thoughts, has said:

“And another really crazy thing about Alzheimer’s, nobody really wants to talk to you any longer. They’re maybe afraid of us. I don’t know if that’s the trouble or not. I assume it is, but we can assure everybody that we know Alzheimer’s is not catching.”

I beg you, chat with your love. Talk about anything. Shoot the breeze with the nonno who lives down the street. Call the nonna who shops at your job and who you know is alone. Chat even if they’re mistaken, and especially if they’ve lost the ability to answer you back. These social interactions, while seemingly trivial, can mean the world to someone, even after their mind has deteriorated and their memory is erased.

Do We Ever Grow Out of Being Afraid?

December 17, 2014December 23, 2014 ccandido1 Passion afraid, alzheimer's, caregiver, cognitiveimpairment, dementia, empathy, mentalhealth, nonna, nonno, scary, shame, stigma

Soo I reluctantly had a birthday recently and am officially a late twenty-something 😐 At 27, I’m already a solid three years into a full blown quarter-life crisis. I’ve spent too much time thinking about who I am, where I’m going, and what I want. I have set goals and chased dreams. I’ve taken chances, saved all my money, spent all my money, and learned big lessons. Despite some questionable decisions and bumps in the road, I’m proud of and ecstatic for present and future endeavors. I still, however, can’t silence all of my twenty-something anxieties; though older, I’m still afraid.

As much as I like to argue otherwise, 27 fortunately isn’t that old. My fears are justified, perhaps, but they’re trivial; I worry about wrinkles and paying rent. I’m afraid of Ferris wheels and spiders and being late to work. I’m scared to go to a bar and not be asked for ID. Otherwise, I am for the most part blissfully naïve and pretentiously invincible.

I joke around, but not all my fears are narcissistic; after all, I work and immerse myself in a field that treats the demented. I see firsthand the impact that Alzheimer’s has on both its victims and their caregivers, and it’s terrifying. It’s no surprise that the disease was recently found to be the scariest disabling condition in later life. According to those 3,000+ surveyed, it’s more frightening than cancer, heart disease, stroke, and diabetes combined.

It’s not uncommon for those experiencing symptoms of dementia to attempt to deny and conceal them, and understandably so. Who the f would want to admit to people that they have the most feared disease out there?! Imagine the humiliating stigma that accompanies a brain disorder. If sharing a diagnosis resulted in being treated like an incompetent child, I’d keep quiet too. Similarly, those caring for a loved one displaying signs are often quick to conceal as well.. if I can’t bring myself to face or accept that my mom is slipping, how am I supposed to speak of her condition aloud?

What we don’t realize, however, is the damage this denial does. Alzheimer’s is progressive and as of now it can’t be cured, but at least its symptoms can be kept at bay or its progression slowed. Early diagnosis allows for planning and for treatment, both of which nonnos and nonnas should be involved in themselves. With this disease, time is undoubtedly of the essence and unfortunately not on your side.

To add some perspective, those experiencing Alzheimer’s symptoms who are worried about stigma remain undiagnosed for 3½ years. That’s 42 months! 42 months that could have been spent delaying advancement, deferring effects, and planning for the future. Especially frightening is the fact that when we as caregivers are concerned of stigma, the delay is even more severe: a nonno remains undiagnosed for an average of 6 years.. 72 f’ing months.

These are serious and unnecessary setbacks. I understand this disease is scary; I witness it every single day. It can be not only confusing, but absolutely heartbreaking and discouraging. It requires the biggest adjustment you’ll likely ever have to make in your lifetime. I beg you, though, be honest. Be open about what you’re seeing or experiencing. Be accepting and empathetic, not shameful. Show compassion and truly mean it. The disease itself is daunting enough – seeking support shouldn’t be.

Approaching Relationships

November 18, 2014December 17, 2014 ccandido1 Passion alzheimer's, anosodiaphoria, anosognosia, caregiver, caregiving, dementia, nonna, nonno, relationships, visitors

It’s been way too long since I’ve posted here! I’ve been debating about whether or not to keep going, as I’m back home and unfortunately no longer with my loves. However, there’s so much more that was learned that I didn’t have time to share, so I decided to keep it up! That and I’m hoping to get a job in the field here, so I will ideally have plenty more to write about in the near future 😉

When I first started working with patients back in 2012, I remember having mixed feelings regarding visitors. Some family members would come to il Rifugio every single day, others occasionally, and some I had never met at all. The same held true this past trip.

I understand that it’s difficult; the illness’s impact on relatives and caregivers can be crippling. Of course, then, the thought alone of the possibility that a loved one may be showing signs of it is terrifying. In fact, a recent survey revealed that people fear being responsible for someone with Alzheimer’s more than they fear actually having the disease themselves. :-O No wonder some have a hard time visiting!

I’ve learned from observing their interactions, though, that the relationships family members have with their ill loved ones can be some of the most beautiful and heartwarming ones to witness; I promise that it doesn’t have to be frightening. What determines where these relationships fall on the scary scale is simple: the approach.

Though we as caregivers may be painfully aware of the change in our nonna or nonno’s condition, they are not. Lucky for them, patients themselves lack this kind of insight; anosognosia is a condition that accompanies dementia and refers to reduced awareness of symptoms. Even in earlier stages, when one may recognize that something isn’t right, they aren’t entirely sure of what’s actually wrong. More important to keep in mind is the fact that they likely don’t care. Anosodiaphoria is also present with dementia, and it refers to a lack of concern about the consequences of these cloudy symptoms. As Dr. Taylor writes in the midst of his own battle with Alzheimer’s:

“Caregivers have pointed out to me a number of incidents during which I was unaware of what I was doing. Even more amazing to me, when told what I did, I didn’t seem to care! And, as a matter of act, I really don’t feel like I should care right now… It is simply amazing to be aware of what you don’t want to do, and when you do it, not to care one way or the other… I have wandered away and didn’t care, and I don’t care, although it sure upset a lot of other people. I didn’t get upset about it. I was not and am still not afraid. Others are upset and afraid for me.”

While we understand facets of our loved ones’ conditions, it’s important that we recognize that they do not and that we treat them accordingly. When your nonna asks you for the fourth time that day if you’ll be eating lunch together, try to keep your patience; don’t allow aggravation to overcome your emotions. Instead of answering frustratingly and asserting that she knows you always eat together, keep in mind that unfortunately she may not. Not anymore, at least. When your nonno insists on wearing a button down and nice slacks every day, refrain from trying to convince him it’s unnecessary; allow him to be comfortable. Compliment him. Ask for his opinion of your own outfit. Whatever you do, respect his harmless decision and thank him for passing his sense of style down to you. Above all, for your own health and sanity, try to remember that the difficulties you’re facing are part of the disease process, not part of the person. Per favore, approach your interactions accordingly.

Conversational in Italian, Fluent in Pavarotti

September 17, 2014December 17, 2014 ccandido1 Passion alzheimer's, italy, music, musictherapy, nonna, nonni, nonno, pavarotti, therapy

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

Can I Still be the “Kennel Girl” ?! Please

September 10, 2014December 17, 2014 ccandido1 Passion alzheimer's, dementia, nonna, nonni, nonno, respect, role, role confusion, role reversal

I know I nonchalantly mention in my “About Me” that I quit my job to come here like it was an easy, almost impulsive decision, but I totally played it down to sound like a baller. It was honestly one of the hardest things I’ve ever done and I cried like a baby. Just this weekend, I woke myself up in the middle of the night because I was dreaming of the kennel and crying so hard that I actually began sobbing IRL. Poor me, leaving my job where I’d get peed on regularly to move to Italy, right?!

There’s so much more to it than that, though. I worked at Hal Wheeler’s for seven years; I grew there. Within that time, I graduated college, went out (and broke up) with my first real boyfriend, attended grad school, watched my parents separate and divorce, moved three times, struggled with figuring out what I wanted to do with my life…I became more of who I am today, and much of my identity was shaped around and influenced by my years there. Hal’s wasn’t just my job, but part of who I was – I snuck my phone number to worried customers and chatted with them late-night so that they’d feel better about leaving their pups (sorry Mike! My boss hated this!!), I took pictures and videos to assure that they were safe, and I kissed and cuddled with them as if they were my Maxi ❤ so that everyone felt more at ease. I was the “kennel girl,” and I cared so deeply about those dogs and their parents.

Though it’s more than a quarter of my life, seven years is nothing compared to the time my patients have spent investing in and growing from their roles, professional and otherwise. I can’t imagine how much more of a baby I’d be had I hit the ten-year mark, let alone something like forty. I honestly feel sad when I think about my replacement and how now if I leave Max to go away she’ll be sending me pictures and talking me down from the ledge that is my irrational nervousness. I cannot begin to fathom, then, the emotions that must be sparked in the face of role confusion (and often reversal) after so many years of perfecting one’s identity.

“Everyone needs a philosophy of life. Mental health is based on the tension between what you are and what you think you should become. You should be striving for worthy goals. Emotional problems arise from being purposeless.” – Viktor Frankl

Frankl’s right, and there is no expiration date on what he said. Imagine being treated as a child by your kids and supervised like an entry-level intern in your own home. Picture having your words spoken for you and a constant presence over your shoulder, for reasons foreign and unfathomable to you. Imagine!! I’m sick at the thought, and I’m only 26; the nonnas and nonnos probably laugh with each other at my so-called independence and unwavering sense of self (lovingly, of course).

Dr. Taylor, a father and former professor, stresses in his essays:

“Actually, what I need is to feel that I am still taking care of something. Something that returns love, that gives itself away without expecting anything back…”

David Troxel reiterates:

“People with dementia still need to feel productive – arranging flowers, sorting and organizing, folding clothes, hammering nails. When my mother was in assisted living, I’d keep rolls of wrapping paper, bows, and supplies in her room. I kept buying new things for her to help me wrap – for a friend, I’d tell her. She had so much fun, picking the paper, holding the ribbon while I tied the bow…

I’d bring my mom half a dozen dress shirts and neckties, and ask for her help. She loved matching the shirts with the best neckties. It’s empowering to feel you have a say in things.”

I see this constantly; nonnas especially love to offer input and provide assistance. After all, they’ve run the show for far longer than I’ve attempted to, and there’s much to be learned from them and their experiences. It is because of this (and so many other reasons) that I approach each patient not with the attitude that they require my help, but that ours is a mutually beneficial relationship. I admire them outwardly and without shame, seeking guidance and offering praise for even the most trivial tasks. I look up at them when we are talking, not down, and kiss their hands when we’re not. I speak properly (Lei, not tu) and show respect. Most importantly, I embrace, encourage, and solicit their guidance and their nurturance, as it has been not only their “job” to provide them but part of who they are for so, so many years.

Learning the Language(s)

September 4, 2014December 17, 2014 ccandido1 Passion alzheimer's, caregiver, italian, italy, language, nonna, nonni, nonno

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.