alzheimer’s

No Prescription Necessary

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Although I’ve been here for nearly two months, most of my friends still crack jokes about the “work” I’m doing (or lack thereof). They affectionately laugh at how when I cry my eyes out on my last day, the patients will have no clue who I am or how long I’ve been with them. How much of an impact can I really have on those suffering from this disease while I’m here in Italy? Even my former boss, whom I admire, adore, and miss every day, asked before I left, “Won’t they just come up with a pill for that eventually?” My efforts, though maybe not entirely useless, couldn’t possibly make any lasting impressions or meaningful advancements.

I can’t blame them. Our world today revolves around pills, no matter the method of obtainment or administration; the stigma is on counseling, not prescriptions. “After all, you don’t go to the doctor for advice, you go to the doctor for a pill. Roots, fruits, and exercise don’t cure diseases – pills do. If you are sad and don’t want to be, take a pill. If you want to be happier, take a pill, or quicker yet, snort one, or the quickest of all is to inject it right into a vein. Pills, pills, pills.” Dr. Taylor’s sadly right.

Believe me, I’m not anti-meds – I have ovarian cysts and I’d sell my soul for a painkiller if I didn’t have one on me during a rupture (TMI?!). To have a pill that would reverse or halt the effects of Alzheimer’s would be beyond incredible, but for now it simply doesn’t exist. Discovering some miracle tablet isn’t that simple, either:

“The truth is that we do not know nearly as much as we think we do about how and why the ‘normal’ brain works. We have some ideas. We have some tests. We have some medications that seem to change behavior by changing the chemistry in the brain. How or why they work is, again, a matter of speculation. We don’t fully understand the chemistry in the first place. How can we figure out what is wrong when we can’t explain what is right?” – Dr. Taylor

According to Paula Spencer Scott, “It’s been 10 years since the newest FDA drug was approved. Even current medications for memory are modest in their impact.” She points out, however, that socialization is treatment for Alzheimer’s disease:

“Boredom is the enemy. If nothing is going on, it often leads to the challenging behaviors that we see – agitation, aggression, crying, wandering.”

I can’t offer a magic pill, but I can provide companionship. I can foster intimacy, closeness, and comfort. We are social by nature, and it is essential for human beings to regularly experience emotional intimacy in order to develop and maintain good mental health. Though of course to only a certain degree, I can empathetically cross the border into Alzheimer’s land:

“When people are very old and deteriorated, no one enters their world – they’re often just sitting there. They will withdraw inward more and more, their desperate need for connection all inside. Here’s a person who has worked his or her whole life, contributing their whole life, who needs that connection again to feel a sense of worth. They’re longing for closeness.

Validation is a way of communicating with very old people who have Alzheimer’s-type dementia. It restores a feeling of dignity and self worth. It’s a way of being with them, feeling what they feel. You pick up their emotions and reflect them back. People who are validated feel safe.” –Naomi Feil

When I laugh with my friends at my own expense, I’m comforted in the fact that I see improvements every single day. Even if you think you’re not making an impact, you are. Don’t ever feel as though your presence, forgotten or not, doesn’t matter. The mood boost of having seen you can in and of itself be huge; “your loved one may not know why she feels happy (from seeing you) but she does. Your presence is cheering, comforting, and de-stressing. 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.” – Paula Spencer Scott

Conversational in Italian, Fluent in Pavarotti

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     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

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HW for life <3

      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.

[Awkward] Silence

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      Upon being accepted to grad school, I remember immediately mapping out my schedule for the next year and a half to start prepping for what was ahead (I’m a full blown nerd, I know). There were course titles that grabbed my attention, like Psychopathology and Human Development, and naturally some that did not, like Group Counseling. Truthfully, my disdain for Group was rooted in pure ignorance; though I’d interned in the field as an undergrad, I had never actually witnessed or participated in group sessions; any assumptions I made about its effectiveness (& fun-ness =P) were without basis.

      As it often turns out, Group ended up being one of the best classes I’ve ever taken. In addition to teaching me a ton, it was actually very therapeutic (I miss my T-Group!). I pitifully confess that my most dreaded course has even proven to be one of the most valuable in my current practice with Alzheimer’s patients. Like a puppy with its tail between its legs, I admit defeat and surrender to the pro-Group team – thank you Dr. Burkholder! 😉

      One of the concepts I am most grateful to have practiced in Group is that of embracing silence. As an outgoing, chatty, 20-something girl (not ready to admit I’m almost 30 and a “woman” :-O stick with “girl” for me please), this was painfully uncomfortable. I don’t know if it’s an American thing, but I feel as though we typically find silence to be awkward. Whether face-to-face, talking on the phone, or exchanging texts, a longer-than-usual pause drives us crazy; even if we’ve spoken the last word, we’re compelled to fill that cringe-worthy gap.

      Sometimes, however, our fillers do more harm than good; interruptions are quieting, but silence inviting. I had the pleasure of watching the king of Group Therapy himself, Dr. Irvin Yalom, in action (on YouTube, at least). I remember taking notes in class and being surprised at how nonresponsive he seemed, both verbally and nonverbally. What kind of group leader was this so-called expert?! Even when there were pauses, he embraced the silence and allowed members to speak up when ready, which they did (he’s a sneaky one!). I grew to realize the importance of making a conscious effort to be an active listener and not attempt to fill conversational voids.

      Dr. Taylor, who I’ve mentioned in previous posts and who is battling the effects of Alzheimer’s himself, has said:

“Answers to my questions which are provided by others sound and feel to me like the answerer didn’t understand my question. Most people offer answers to their own questions, not mine…Perhaps too much time is spent trying to answer and question each other, when what I really need is to feel like I am being heard. I know you don’t have all the answers. You also don’t have all the questions! Neither do I! And the unanswerable questions keep coming and coming with each new symptom of the disease.”

      It’s often common practice to repeat questions to patients who have yet to offer a response. Usually, such recurrences differ only in volume or tone; we’ll ask the exact same question again, only louder as if it wasn’t heard and with more force as patience wears thin. There seems to be a direct correlation between response time and angst, no matter the conversers!

“My family will ask me to do something, and I don’t do it. Early in the disease process, they assumed I didn’t hear them. They would tell me again. This got old after a while. They became annoyed at having to tell me the same thing over and over again. Later on, they realized there was a possibility that my twisted brain fibers actually didn’t understand their words.” – Dr. Taylor

      As the semester progressed and I myself acted as a leader, I was delighted to recognize my first Yalom moment: I had welcomed a silent pause in one group member’s testimony, which led her to elaborate and share more deeply. Had I quickly tried to fill that gap, I would have interrupted her thought and she may not have continued. Similarly, I’ve worked with patients here who have mastered the ultimate awkward silence: they’ve frozen. Their affects have turned flat, their eyes glazed over, and I swear for a minute they’ve actually stopped breathing. Before I wipe the sweat from my forehead and the color is drained from my face, though, they surprise me and respond; my patience is rewarded and the painful reluctance to intervene pays off.

      Touché Yalom, touché.

Learning the Language(s)

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

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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.

il primo

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Ciao! My name is Christina and I’m 26 years old. Though born and raised in Jersey, I’m currently living and volunteering in Northern Italy. I graduated with my Master’s in May, quit my job in July, and moved here to learn, help, love, and, of course, attempt to fill the bottomless pit that is my sense of wanderlust. My ultimate dream is to work in geriatrics – I am applying to doctoral programs and would love to eventually help individuals with neurological disorders like Alzheimer’s and Parkinson’s. This blog is meant to organize my experiences and research, and to share what I’m learning in relation to caregiving, neurology, and travel. 🙂