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.

Hi, This is My Grandmother!

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.

I Care: A Handbook for Care Partners of People with Dementia

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No book review in over a year ≠ no books read in over a year. However, none have truly moved me enough to write about them… until I Care: A Handbook for Care Partners of People with Dementia. Though well over 100 pages, I Care is a quick, easy, engaging read that I honestly couldn’t put down. Its co-authors are well known in the field and offer not only insight and guidance, but also real-life stories of caregivers navigating the world of dementia.

One of my favorite things about I Care is the way the authors explain dementia and exactly how it can affect various parts of the brain. They’ve written in a manner that is both informative and easily understood. An awesome analogy, for example:

“[the brain] is a communication network, with neurons being the computers and phones, and the axons and dendrites being the wires and radio signals that allow them to share information.”

Why didn’t our bio professors explain it this way?! Find I Care on Amazon here.

Was Your Husband Jealous?

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I’m admittedly a very here-and-now kind of girl, neither a planner nor nostalgic. There’s something about both the honesty and spontaneity of living in the present that just draws me to it. That and I 1) have an awful memory and 2) was brainwashed by Dr. Yalom as a grad student. :/ When it comes to my loves, however, I’m finding more and more that there is an incredible benefit to reminiscing.

Reminiscence therapy involves recalling personal experiences from one’s past. Its purpose is to improve functioning by decreasing demands on impaired cognitive abilities and capitalizing on those that are preserved. The most prominent memories I have of my early RT days are centered on the question, “Tuo marito era geloso?” Obviously, I had my first taste of reminiscence therapy in Italy.

Often used to help treat depression, RT is particularly beneficial for the elderly for a number of reasons:

  1. Reminiscing doesn’t demand some new or complicated skill. It doesn’t put you on the spot or require you to think on your feet. Because of this, it’s suitable for those experiencing some sort of cognitive decline or deficiency.
  2. Those participating in RT are the main actors in their stories. They’re able to feel comfortable, involved, and in control.
  3. Even when confined to one’s own mind, nostalgia is social in nature. It stimulates feelings of connectedness to others; sharing stories cultivates a sense of universality or togetherness. It helps people let their guard down and become better acquainted with one another.
  4. Reminiscing about the past can foster a great deal of satisfaction and understanding. For my loves, it’s a means of affirming who they are and what they’ve accomplished, as well as a chance to relive happier times. Despite their cognitive state, it’s a way to talk easily about the things they do remember.

So, where does the jealous husband fit into all of this?! & how do I implement RT on a daily basis here negli Stati Uniti? In Italy, I didn’t know my nonnas’ backgrounds. For the most part, I hadn’t met their families and I had no idea how they grew up. What I quickly learned I could assume, however, was that their nonno counterparts were extremely (and stereotypically!) jealous. Asking a question as simple as, “Was your husband jealous?” was enough to spark responses filled not just with detail, but with life. It triggered shared laughs and parallel memories. It got my loves talking, smiling, and feeling close to one another.

It’s one thing to stir up recollections, but another to remember them:

“As a result of feeling shaken up and beaten down, a resident experiences low self-esteem. Part of the rebuilding of a resident’s sense of personal worth comes from my spending time with her, giving her attention, listening to her, and making the effort to help her. Making regular visits to a resident, remembering the content of previous conversations, and offering assistance are generally experienced as caring concern and can help to restore her sense of worth.

The primary factor that promotes loving care in [assisted living] is that the caretaker must get to know the resident personally. … Personal knowledge is likely to engender empathy and connection.”

Simple Lessons for a Better Life

I always want to know the whole scoop. When I meet potential residents and their family members, I ask a thousand questions; I want to know how they met their spouse, what they did for a living, what they loved to do most, etc. This information may seem trivial or unnecessary being that they’re looking for a solution to a problem that is very much in the here-and-now, not related to their past, but this is the most important part of our conversation. It is their story that’s essential, not their diagnoses, med list, or cognitive state. That’s all valuable, but it is no doubt secondary to who they are as an individual and how they came to be.

If I see a nonno crying in his bedroom, I want to know it’s because this would have been his anniversary, not to assume he’s sundowning. I want to hold his hand as we talk about his wife and reflect on the winters they spent in Boca. I want to make each nonna feel heard.. to show her that she’s loved and listened to, her stories appreciated. And when she could use a laugh, I want to bust her about her feisty husband, swearing I don’t envy her yet fawning over his timeless, passionate, inspiring (albeit fiery) love for her.

Kiss Me Like You Mean It

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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.

Robin Williams & Dementia

A little over a year ago, in August 2014, hearts ached everywhere for Robin Williams. All the way in Italy, just days into my volunteer trip, news stations covered the story of his suicide from morning until night. It’s an incredible thing to see firsthand the impact a person can have on the world; Robin’s language was English, but his passion, excitement, warmth, and humor universal. All were shocked and saddened to learn that someone so outwardly cheerful, so loved and admired, felt so down and alone. Depression is a cripplingly powerful illness.

Just this week, there’s been a new onslaught of media attention thanks to an interview People Magazine conducted with Robin’s wife. Speaking out for the first time, Susan confirmed that while her husband did suffer from depression, his post-mortem diagnosis indicated that he had Diffuse Lewy Body Dementia, as well, an illness responsible for the alarming symptoms he was quietly experiencing. I, like the rest of the world, am surprised by this diagnosis… but not at all by his actions.

The disease is named after Lewy bodies, or abnormal protein deposits on the brain. It affects not only a person’s memory, but also their mood, thoughts, behavior, and ability to move. It is the third most common cause of dementia and its symptoms, which cannot be cured, worsen over time. According to Susan, in the year leading up to his death, Robin “struggled with unexplained mental symptoms including anxiety and delusions. The disease also manifested itself physically, burdening him with muscle rigidity and impaired movement. It wasn’t until he died and his body was autopsied, however, that doctors were able to pinpoint the cause of his symptoms.”

How f’ing horrifying. Can you imagine being diagnosed first with Parkinson’s, then experiencing symptoms that literally drive you crazy?

“This personal change phenomenon is, in my humble opinion, the most powerful and devastating symptom of dementia I have thus far experienced. There is little written about it, other than to say, “There may be personality changes.” I may become a tad “more confrontational, paranoid, confused” than I was before [onset]. Where are the studies of these phenomena? Where are the books, the papers, the programs on what to expect, how to deal with it, what pills to take to reverse it? Who is researching “[dementia] personalities syndromes?”

Dr. Taylor

The diagnosis alone of something like Parkinson’s disease, which his often accompanied by dementia, is – in my opinion – enough to push someone over the edge.

“There is a very practical explanation as to why individuals with end-stage [dementia] do not take their own lives, nor do they ponder or plan the act. They simply lack the intellectual capacity, and the physical ability, to end their lives. However, what are individuals diagnosed with the disease to think when they are staring at a video of an individual in the end stage? What are we to think as we stare down the gun barrel of death, but have yet to crawl into it?

– the insanely powerful words of Dr. Taylor

Similarly, fellow dementia sufferer Dr. Cary Henderson writes:

“I really sincerely believe that if somebody wants to go ahead and die from [dementia], if life has become that bad for them, I think anybody who can quietly assist them to die, I think, would be a [godsend].

This Dr. Kevorkian, this doctor way up North who helped people to kill themselves – I think he did the right thing. Apparently all of these people had wanted to die, and had a very, very good reason for it.

When your mind is dead or dying and there’s no recourse, and the best you can do is spend the rest of your life in pure stupidity and unknowing stupidity… I think that is one of the biggest travesties of what sometimes is called “medicine” that we have ever heard of. It seems like fairly commonly, we do read about people who die from [dementia], but we can also speculate about people with [dementia] who – they’re ready to die. I would think it’s just overwhelming them to the point where there’s no place to go, no place to hide.”

As a society, we feel and say things like, “Suicide is selfish.” We’re quick to judge and make assumptions. We “put ourselves in others’ shoes” when we truly have no clue. My heart aches more for Robin Williams now than it has since the news broke of his death. I hope above all else that he is at peace, and that his wife’s statements shed light on this disease.. that they fuel the too-dull fire that is the importance of dementia research and awareness, and that together we make strides toward finding cures.

Time Flies

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

Rainbows & Tornadoes

Last week, I had a nightmare so vivid that it woke me from my sleep. On a normal afternoon, an eerily calm friend warned me of a fast-approaching tornado. When he brought me to the window and I saw it for myself, I knew time was of the essence: this monster storm, equipped with lightning bolts and roofless homes, was tearing through the streets. As quickly as I could, I grabbed every nonno and nonna in sight and hurried to the elevator. Once safely in the basement, I slid into the crawlspace and peaked out its tiny opening. When the twister hit our building, it was so loud I panicked IRL. How horrifying is that?

My nightmare does not go with the compassionate, encouraging, optimistic theme of this blog. It is neither comforting nor hopeful. It is, however, an indisputable metaphor for an unfortunate reality: despite its infinite rewards, caring and advocating for the elderly can burnnnn youuuu outttt.

Is this burnout inevitable, or is it felt only by the weak? I was fortunate enough to meet Dr. Charles Dodgen, author of Simple Lessons for a Better Life, this month. Dr. D has posed a similar question:

“Is the capacity for love, compassion, and caring for others finite? … Do the burdens of human service necessarily result in exhaustion of caretakers so that they either have limited careers or become emotionally debilitated?”

Respite and self-care, I’m learning, are a lot like trekking sticks: no matter what we’ve got to offer or how in shape we think we are, we all need them:

“There is no limit to the depths of these reserves or the number of people one can love or care about. However, there are certain basic conditions that I believe must exist in order to maintain the supply of compassion.”

Dr. Charles Dodgen

To care for someone you love, particularly someone older, frail, and vulnerable, is both an honor and a duty. Advocating on their behalf will be equal parts rewarding and disheartening.. hopeful and discouraging.. empowering and humbling. It is simultaneously one of the most fulfilling and draining things you’ll ever have the strength and courage to accomplish.

The ultimate loving act, however – the ultimate selfless act is to first love yourself enough to care for you:

“Think of it as an investment that will allow you to love and support the person who’s sick. When I felt my reserves were depleting, I’d remind myself to stop achieving and start receiving.”

Paula Spencer Scott

As Dr. D reiterates, “Another major factor that affects a caretaker’s ability to give positive, loving care to residents is the general condition of his own life.” We must secure our oxygen masks before attending to a child, and blow up our life vest before assisting a companion (sorry not sorry for the flight references 😉 ). The point is, if we do not take care of ourselves first, we will not be in a position to love and care for others. Get your nonna to the basement, but make sure the crawlspace is vacant.

You Don’t Live Here?

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. ❤