Commendable or Crazy?

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Picture this: it’s 9:57AM and you’re just waking up, super late for work. Groggy and in a little pain, you immediately reach for your phone – why the f didn’t your alarm go off?! Wait, why is your phone not plugged in on your nightstand? Where is your nightstand? You don’t know where you are, but it definitely isn’t home. Perhaps more frightening, you’re not alone. You ask for – no, you demand answers. You had to have been kidnapped (possibly even drugged) and, rightfully so, you’re not going down without a fight.

Under most circumstances in the above situation, we’d praise the fighter; we would commend them for their bravery and validate their panic. At the very least, we’d empathize with their hysteria. In the case of dementia sufferers, however, our reactions differ. When a nonno whose reality orientation is off by 50 years insists on getting to work, we scoff. When a nonna swears she has to get her kids from school, we try to snap her out of it. Even worse, when emotions escalate, we dish out labels like “behaviors” or “agitation” and over medicate for good measure. Suddenly, the above scenario reads paranoia and delusion.

Dementia is so much more than memory loss. It has a lot of positive symptoms, too, or ones that manifest themselves as a result of some condition. Hallucinations, delusions, illusions, and paranoia are examples, to name a few.

  • Hallucinations are the perception of an object or event in any of the five senses in the absence of an actual external stimulus. They can be visual, auditory, etc.
  • Delusions are false beliefs that are based on incorrect inferences about real external stimuli. So a person isn’t necessarily seeing or hearing things, they’re believing in something that simply isn’t true and that has evidence against its validity. They could assert that they don’t live in their own home and truly believe it, even though it’s evident that not only do they reside there now, they’ve been there for nearly 30 years.
  • Illusions involve distortions of the senses or how one interprets sensory information. Someone may hear a violent show on TV and interpret the scenes to be happening in real life, for instance.
  • Paranoia is heavily influenced by fear, often to the point of irrationality. Paranoid thinking, then, usually involves anxiety-inducing beliefs about some perceived threat.

As unnatural as it may feel and difficult as it can be, it is so important to put yourself in your loved one’s shoes. Instead of trying to bring your nonna back down to earth and convince her she’s mistaken, think outside the box: what’s triggering her perception? Consider her environment and any changes that may be beneficial: provide adequate lighting, avoid sensory overloads, and make detailed observations. Something as trivial as rustling bushes could trigger the perception of an outside intruder. Most importantly, reassure her and validate her feelings. Lock the deadbolt on her front door and alert the authorities of suspicious behavior (wink wink). Tomorrow, address her overgrown shrubs.

An old friend recently shared a story about her mom that serves as the perfect example of how to act in such situations. Her mother, who is believed to be suffering from frontotemporal dementia, is convinced there is a snake in her bedroom. The fear became so debilitating that she could no longer sleep in her own bed. Her compassionate (and smart!) first born nixed the reality orientating game and stepped into her mom’s world: every evening, she screens the room alone then lovingly (and convincingly) assures her mother that she’s thrown the snake out the window. On particularly rough days, she calls for backup and “exterminators fumigate the house.” Unnatural? Maybe. Insanely comforting, thoughtful, and commendable? Absolutely.

What’s Your Sign?

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Full disclosure: I know close to nothing about astrology. I have no idea how planets retrograde or what it means for all the signs. I do, however, follow Thought Catalog religiously, and find its zodiac posts to be alarmingly accurate. The above assertion fits me to a T: I don’t stress easily, but try to control me and I’m instantly claustrophobic. Not physically, of course, but emotionally – down to my core, I feel suffocated.

Horoscopes are vague. They’re intended to be broad enough to apply to everyone yet specific enough to strike a cord. At the very least, they get you thinking. Conforming, being told what to do, and meeting deadlines aren’t just anxiety-inducing to us Sagittarians; we as human beings crave autonomy. We inherently desire the ability to make choices consistent with our own free will.

According to the self-determination theory, human aspiration relies on three core psychological needs: autonomy, competency, and relatedness/the need for social connection and intimacy. In other words, we need to feel that we are free to make our own decisions, that we’re capable and thriving, and that we’re connected to other people. Satisfy all three, they say, and find your bliss. Restrict them, however, and you’ll experience more than just claustrophobia.

Constraints on our autonomy can both destroy our sense of happiness and spark retaliation. Throw incompetence and isolation into the mix and you’ve got the perfect storm. Interestingly (and sadly) enough, that is exactly what one experiences when they have dementia. Luckily, we can do something about it.

For whatever God forsaken reason, it seems as though our instinctual reaction when a loved one starts deteriorating is to completely take over. Are they drinking enough water? Have they gotten enough sleep? What about their diet – are there three square meals a day? Coffee’s out of the question, as are sugars and red meats. Che cazzo?! Innocently and with the best intentions, we as caregivers assume total control. What we don’t realize, however, is that our authority may do more harm than good.

Research shows that the desire for and assertion of power are sometimes misconstrued; its appeal is not, in fact, to control things but rather to control oneself:

“Power as autonomy allows one person to ignore and resist the influence of others and thus to shape one’s own destiny. … Generally, when people say they want power, what they really want is autonomy. And when they get that autonomy, they tend to stop wanting power.”

The Atlantic: People Want Power Because They Want Autonomy

When it comes to dementia, we so naively take the reins and are confused by the reaction. We use tough love to set new standards and enforce rules with no real bearing. Could nonna benefit from cutting ice cream out of her diet? To some degree, I’m sure. Would nonno nap less after breakfast if he skipped the nightly news? Yes, most likely. Odds are he’d also fight your bedtime.

Put yourself in their shoes. Try to think objectively of what is necessary and practice patience and acceptance. When your influence is required, be mindful of its implications. After all, wouldn’t you be pissed if someone messed with your routine? Sagittarius or not, I bet you would.

Favorite Spots in Italy by Season: SPRING

Have you ever noticed that certain smells can conjure memories? That something as simple as a whiff of bonfire can bring you back to summer, or pine cones to Christmastime? Flowers do that to me, and they transport me right to Italy in the springtime. While there’s nowhere in the entire country I’d say is bad to visit now, I definitely have my favorites. Lake Como, most famously known as home to George Clooney, is without question number one.

Lake Como

As my weekend trips become more frequent, I’m beginning to adopt new “traditions”. Lake Como in the spring is one of them (and perhaps my most favorite). This past April was my sixth visit to the lake, and every single year it leaves me breathless. I experimented at first and stayed in different towns before stumbling upon Menaggio, a picturesque comune situated directly across from the popular Varenna and diagonal to world-famous Bellagio. It was formerly a walled city, with remnants still evident today. Unlike other lakeside towns, it has an incredibly charming piazza equipped with restaurants, cafes, shops, outdoor markets, and a tiny train that offers rides to nearby Lenno. Oh, and its views are absolutely insane.

Menaggio makes you feel like you’re in old-world Italy and, though many people speak English, it’s not nearly as touristy as its crowded neighbors. It’s a great home base if you’re up for exploring, as Bellagio and Varenna are both a short, cheap ferry ride away. It also sits at the foot of Monte Grona, home to Rifugio Menaggio (and its indescribable views) and reachable via hiking trails.

One of the best things I’ve ever done on the lake (aside from eat my face off at Bar Constantin) is rent a boat. You don’t need a license and they provide about 30 seconds of instruction, but Lake Como is easier to navigate than one might imagine. My only regret is that I missed out on doing this my first five trips – the experience is beyond words.

  • How to arrive: Milan’s Malpensa airport is almost always cheap to fly directly into from New York, and it’s luckily about an hour from Menaggio. Not only is a car unnecessary, but you’ll also have to pay to park so it’s really not worth it. I use the same car service every time and our driver Luigi is phenomenal; he has to be the most knowledgeable person in the world when it comes to Lake Como.
  • Where to stay: There are a lot of great hotels in Menaggio, and you honestly can’t go wrong with any of them. My favorite, however, is hands down Hotel Garni Corona. It was recently renovated and the staff welcomes you as if you’re family. Reserve early if you can – it books up fast!

Rome

I am so partial to my beloved Rome that it even has its own post. The Eternal City was one of the first places I visited in Italy at 15 years old, and I was so in love that I went to great lengths to return. The [unrealistic] deal with my strict parents was that if I could pay for it on my own, I could study abroad in Rome. At 18, I knew I had two reasonable options: become a bartender or get my real estate license (I had disappointedly nixed being a high class escort when I learned it’s not, in fact, like The Wedding Date IRL). I enrolled in real estate school that summer, sold a house in November, and was the first to hand in my check to Dottoressa Romani in January. Nice try, Mom & Dad. 😉

It was a struggle to decide which season Rome should fall within, as it’s honestly a favorite all year round. I won’t go into too many details, as the post I linked above outlines basically everything you need to know. However, I want to specify why I chose the spring as my favorite time to visit: Rome is stunning in the springtime. The weather is relatively mild all year long, but few days can hold a candle to those spent beneath the warm Italian sun in April and May. Temp aside, the Eternal City is adorned with beautiful flowers and tropical palm trees. As it’s not yet peak season, it’s less crowded and claustrophobic than during summer months, which means prices are also more reasonable (and food tastier).

Oh, and don’t even get me started on Holy Week. I was fortunate enough to attend Palm Sunday mass at the Vatican in 2015, and I’ve yet to experience anything remotely like it. Religious or not, Rome in around Easter is moving beyond words. You can get tickets to papal masses directly from the Swiss Guards in St. Peter’s Square, but for popular holidays it’s recommended that you order them ahead of time. Ours were super easy to get, and they’re free!

  • How to arrive: Unfortunately, it’s never super cheap to get to Rome from NYC. Airlines like TAP Portugal will sometimes offer deals with a quick layover in Lisbon or Porto, but if you need to fly direct, your best bet is to save up miles. Once you’ve landed in Fiumicino, it’s super easy to get to the city center (Stazione Termini) via the Leonardo Express train. *EDIT* Best breaking news ever: Norwegian has just announced that they’re now offering direct, RT flights from EWR to FCO for $410 beginning in November! This is absolutely unheard of and Norwegian is, in my opinion, a phenomenal airline. Don’t think twice – BOOK IT!
  • Where to stay: The options are endless in terms of accommodations in Rome. Personally, my favorite area to stay in is the Campo Marzio neighborhood; it’s the perfect home base to explore the city in its entirety. More specifically, I want to be close to the Spanish Steps. Inn Spagna has been a long-time favorite. Consider yourself warned, though – as is common in Rome, it doesn’t have an elevator :-O

Senti

Just over a month ago, I began a new job at an elder law firm. Our attorney works primarily with seniors and specializes in things like estate planning and guardianships. He’s the one you consult when it’s time to make those difficult decisions about what your end of life wishes may be and how you hope to have them carried out. Disheartening, I know, but also necessary and so, so important.

Coincidentally, these past few weeks I’ve learned a considerable amount about hospice and palliative care. Most interesting, in my opinion, have been experiences shared regarding reactions to one’s own impending death: just as an individual draws up documents to ensure their affairs are in order, you often find they’ll tie up loose personal ends, as well. An article in Clearly Caring Magazine points out:

“Admittedly, the dying often use a level of candor and boldness once they are given a few months to live. They use the time to mend fences, bury hatchets, heal family wounds, and bring closure to their brief time remaining on earth. Most speak with wonderful frankness; even the most silent become bold and courageous.”

Of course, loved ones are also affected and must likewise prepare for the impending loss. Together, they’ll frequently experience what is known as “anticipatory grief,” or the dread and emotional preparation felt prior to the actual death of the patient. Though it has been postulated that going through the stages of grief while someone is still alive may lessen its impact upon death, the entire experience can still be incredibly taxing and unbearably sad.. one you wouldn’t wish upon your worst enemy, especially not more than once.

People with dementia die twice. They gradually recede from their loved ones while still living, and their family loses the person they knew and loved slowly over time. Depending on the circumstances, they’re most likely unable to achieve that closure we so desperately crave toward end of life. At minimum, they’re not able to do so as effectively as someone whose cognition remains unimpaired. Don’t think for a second they don’t try, though. As our attorney must do to ensure that one’s most intimate concerns are outlined and understood, it is essential that you listen:

Naomi Feil, the originator of Validation Therapy, “believes that the healer’s job is to listen to the patient, to give speaking time to the patient, to not interrupt, to not correct, and to not be judgmental. Responding in this way validates the patient’s existence, which means that the healer must accept the world in which the patient is living. … The rationality behind the irrational, demented talk is that patients are “tying up loose ends” before death; they want to reconcile the events of their lives so that they can conclude that their lives made a difference, that the world is better because they were here. This can only happen if the healers give up their dominant positions and take the time to listen. The nonverbal time variable is key.”

They say hindsight is always 20/20. Looking back, I can recall several instances in which my loves were likely cleaning slates toward end of life. A favorite nonno was particularly inspiring, as he was so tender and affectionate toward his wife of nearly 60 years. He recounted memories with great lucidity, held her hand while they slept, and professed his love relentlessly (“You know I love you Rosie, right? You know how much I adore you?!”). When reflecting on her parents’ relationship, their daughter shared with me that her father was nothing like this before. In fact, he very rarely spoke about his feelings. I like to think that, despite his dementia, he was determined before he passed to make sure his sweetheart knew. Perhaps the most beautiful part of all, she listened to him (and she reciprocated).

It’s Always You In My Big Dreams

I am a big believer in the importance and interpretation of dreams. I’m also a huge Something Corporate fan, and when Konstantine popped up on Pandora this morning I couldn’t help but feel both sentimental and excited – not pumped about the throwback itself necessarily, but thrilled about the path I’m on despite its ups and downs. My loves are truly at the heart of everything I do and are the focus of so many dreams.

I posted the below as part of a travel contest submission this month. Applicants were asked to creatively describe their favorite place in a video under three minutes. While mine was a no-brainer, I ironically accepted a new position within two weeks of my vid’s YouTube debut. In true form, I’d begun to grow restless; there had to be a way I could make an impact on a larger scale, beyond the walls of my casa di riposo and even Bergen County.

Today, I begin the next leg of my ever-winding journey toward fulfilling my dreams. While bittersweet, I feel simultaneously rejuvenated and calm.. a sort of peacefulness that comes only with knowing you’re exactly where you’re supposed to be. To my nonnos and nonnas in Paramus, I miss you always and I’ll see you for the next travel slide show. ❤

How To Drive Yourself Crazy Caring for Your Loved One with Dementia in 5 Easy Steps

Books, open forums, support groups, blogs: there are numerous platforms that offer advice on what to do when your loved one has dementia. A simple Google search alone yields over 1.5 million results in half a second. While often helpful and insightful, I’ve come to find that there’s a benefit to learning what not to do, as well, especially when given relatable examples that might just sound familiar. As promised, below are five easy steps to drive yourself crazy when caring for your loved one with dementia:

  1. Orient them to reality: Due to the nature of her disease, your nonna may revert back to another period of time in her life that she now believes to be the present. It’s possible that you’ll find her worrying about her parents who reside nearby, not in Heaven, or a job she’s still committed to, not retired from. When such situations arise and anxiety and confusion persist, comfort her by bringing her back to reality. Firmly remind her that it’s 2017, she’s 96 years old, and obviously completely losing it.
  2. Argue: On a similar note, once you’ve explained to your nonna that she does not, in fact, have to catch the 5:00 bus, listen to her rebuttal. Consider the points she’s made and quickly call attention to their absurdity. Laugh at the ridiculousness and respond accordingly, reminding her that she hasn’t lived in Hoboken in 35 years and her place of employment is now a parking garage. Oh, and the mom and dad she’s worried about? They’re dead. Duh!
  3. Repeat yourself: When brought back to the present, it’s not uncommon for your nonno to voice concerns. After all, he’s living in a totally different reality than that which was just described to him. He’ll have some questions, surely, and your answers are important. If and when he’s still perplexed, simply repeat yourself: seriously, say the exact same thing you just stated as if he didn’t hear you. Works every time!
  4. Rush them: Patience is to be practiced on naive children, not seniors who should know better. If your nonno seems to be having a difficult time following through with trivial, everyday tasks like getting dressed, try a tough-love approach. Put some pressure on him: set time limits and outline strict consequences. Stress can be a motivator, too!
  5. Expect them to be who they’ve always been (and take it personally when they’re not): In the same breath, keep in mind that older people are set in their ways. Not only does your nonna know what she’s doing, she’s also got a motive behind her actions. Know the games she plays and don’t feed into them; make it clear you’re not down for nonsense and encourage her to get it together or else (nursing home, anyone?!).

Seriously, I cringed just typing the above. Unless you simultaneously hate your nonno and love self-harm, please don’t practice anything on this list. In fact, do the opposite. My examples may read humorous and even a bit extreme, but it’s not uncommon for caregivers to find themselves in similar, equally frustrating situations. Always keep in mind that what you’re now experiencing is the disease, not the loved one you once knew. Be patient and be kind. To keep yourself from truly going crazy, just go with the flow; dementia’s demons foster arguments you will never win and changes you cannot control. The only one whose outlook can be altered is your own.

TSA, It’s Me Again…

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Hemingway was so wise. The above is one of my favorite excerpts from “For Whom the Bell Tolls,” and it’s a lesson of which I’m constantly reminded when spending time with my loves. Many of them were not as fortunate as I am to realize the validity of that quote at such a young age. Some, however, possess an inspiring “better late than never” attitude.

I met a woman this week who toured my community on behalf of her dad. I knew she had just returned from a European vacation, but it truthfully came as a surprise to hear that it was one her father not only attended, but booked and planned for his family.  At 87 years old, this determined nonno is simply not willing to leave items on his bucket list unchecked. He realizes now more than ever that the clock is ticking; if he doesn’t see the places he’s dreamt of now, he may never get to them at all. A bigger motivator/quasi-roadblock (depending on your outlook): he has dementia.

My spirit animal nonno (I’ll call him J) is in the earlier stages of the disease process. He sadly knows there are changes happening to his mind, and he’s terrified of their consequences. As is common in diseases like Alzheimer’s, short-term memory loss is one of the earlier symptoms one can recognize:

“The hippocampus takes our immediate thoughts and impressions and turns them into memories. Alzheimer’s attacks the hippocampus first, so short-term memory is the first thing to fail. Eventually, new memories become impossible to make and learning is a thing of the past. Without knowing what just happened, it’s difficult for people to judge things like time, place, and what’s going on around them.”

The Forgetting

In his case, J is constantly misplacing things. He’ll store his online banking passwords somewhere safe, for instance, only to be on the phone with his teller a day later to reset what’s now forgotten. Even more alarming IMHO: he’s lost his passport three separate times. His angel of a daughter has expedited new ones, knowing how important that document is to her wanderlusting father.

J is on a race against a clock with unmarked intervals. Dementia lays no clear path and gives no notice as it changes course. Imagine how terrifying it is, then, to know your days are numbered.. to recognize that sometime soon, you won’t be truly you anymore. How debilitating that fear must be:

“Alzheimer’s is a lot of stress, mainly because you know what you have been earlier and you know very well you’re not that good now and it’s real hard to reconcile. … We really do want to be like human beings. We have so many fears: the fear of forgetting things, the fear of tripping over something. Our speech is not too clear sometimes and our feelings are hard to sort out many times.”

-Cary Henderson, A Partial View

This month, J killed it in Europe. He walked the cobblestone streets of Rome, ate French bread in a Parisian café, and gambled in Monte Carlo. He was happy and he thrived. God willing, if he’s still able, he’ll visit Japan and Cuba next. Without a doubt, he’ll fiercely battle this disease and fight for what he loves – as long as that next passport’s expedited.