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.

Greatest Accomplishment

January 20, 2015April 9, 2015 ccandido1 Passion alzheimer's, caregiving, dementia, erik erikson, erikson, grab bag, keeping your mind strong, memory loss, reminiscence therpay

As part of my job description, I’m given the opportunity to present in front of local seniors, other professionals, at hospitals, in nursing or assisted living facilities, etc. The topics vary and include things like Keeping Your Mind Strong and Normal Aging vs. Dementia. As if I hadn’t loved grad school enough, I am even more grateful for it now; those PowerPoints and mock group sessions have prepared me beyond measure. My first presentation was last week and I was in my glory.

The Memory Loss workshop was sponsored by Newark Beth Israel and held at the South Ward Senior Citizen Center in Newark. My boss and I anticipated about 10 people showing up, assuming it would be an easy practice run for me with little room for error. I in turn showed up alone and, to my surprise, was greeted by 40 nonnos and nonnas. I was ecstatic. We spent over an hour discussing memory loss prevention, reminiscing together, and learning from each other.

I want to keep my presentations interactive, so I had us play a reminiscence grab bag game toward the end. The way it works is that everyone picks a tiny piece of paper from a hat, not revealing their “memory” until all have finished and we go around the room. Memories include cues like “first kiss,” “worst job I’ve ever had,” “most embarrassing moment,” etc. I’ve used it in grad school internships and it’s always proven to be a fun, playful way to rummage through the past, to get to know each other better, and to create a sense of universality.

When asked to share her greatest accomplishment with the group, a SWSCC member said, “I learned to stop worrying so much about everything and just focus on the positive.” Ummm cosa?! As a naïve twenty-something, I naturally expected one’s response to be something like “landing my dream job” or “giving birth.” I applauded her for her achievement and expressed that this takes time, noting that, at 27, I’m still working on it. Her response (which she whispered into my ear): “Let me tell you a secret that will help speed things up: be thankful. Really appreciate life and all of your blessings. Be grateful, and you’ll no longer be worried about worrying.”

What a powerful and admirable achievement. Renowned psychologist Erik Erikson explained that we spend a big portion of our adult lives frantically searching for creative, meaningful work, dreading the idea of being “stuck.” (<- e` vero) We immerse ourselves in our responsibilities, striving to attain what’s unattainable and fill the void that is its absence. Little do we realize, though, that by focusing on what we’ve yet to acquire, we lose sight of how fortunate and capable we already are.

My insightful audience member’s wisdom can be applied in any situation and at any point in one’s life; whether an adult still striving or a senior reflecting back, it is essential that we realize and take pride in our accomplishments. When working with our nonnos and nonnas, we need to focus on what is precious and unique about them, celebrating what they can still do as opposed to what they cannot. We must nurture a positive, purposeful life. Most importantly, we are to lift spirits and applaud strengths.

My next workshop is on February 4^th in Summit. To say I’m excited to hear more grab bag responses is an f’ing understatement.

Partial View: An Alzheimer’s Journal

January 15, 2015January 15, 2015 ccandido1 Print alzheimer's, alzheimer's journal, cary henderson, dementia, endalz, partial view

It’s been too long since I’ve written a book review post! After much anticipation, I finally received former history professor Cary Henderson’s Partial View: An Alzheimer’s Journal.

Typically, one cannot receive a definite diagnosis of Alzheimer’s until they’ve passed away and an autopsy is performed. Mr. Henderson, however, was a rare exception; he had had a biopsy for something unrelated and the results confirmed he had the disease. Though no longer able to write, he used a tape recorder to track and share his thoughts. His wife and daughter eventually transcribed his footage and wrote this book, which I was able to finish in a little over an hour.

Partial View contains mostly random, unrelated thoughts; it doesn’t follow a clear path, but is nonetheless informative and definitely provides a glimpse of what an individual with Alzheimer’s is thinking and feeling. It’s a quick, easy read, and though it won’t necessarily change your life, I think it’s worth the hour! Plus, you can find it on Amazon for as cheap as a dollar.

One of my favorite quotes (he keeps you laughing!):
“I did stop going to church. The biggest reason – well, there were two reasons, one of which is that I am not really enamored of a God who creates something like Alzheimer’s and the second is I’m afraid of tripping.”

I Want to Go Home

January 6, 2015April 9, 2015 ccandido1 Passion accent wall, alzheimer's, apartment, dementia, i want to go home, role confusion, take me home, twenty-something, where am i

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I don’t want to toot my own horn, but how cute is my apartment?! This is the first place I’ve rented entirely on my own and I’m so proud of the work I’ve put into painting, decorating, and affording it. I feel like such a grownup! After all, nothing screams “adult” or “accomplished” quite like a stenciled accent wall (confession: it’s not worth it.. do yourself a favor and go with wallpaper).

This may seem like a humble brag post, but there’s a reason I’m mentioning both my apartment and my affinity for it. It’s not just my place that I love right now, it’s my life. I’m head over heels for my job, my friends, my galavanting, and for where I’m at in general. It breaks my heart, then, to know that when my loves say they “want to go home,” this is where they mean. Nine times out of 10, they’re not referring to the house they’ve lived in for the last 30 years, and they certainly don’t mean the nursing home in which they currently reside. This “home” isn’t even necessarily a tangible place; it’s their life.

Nonnos and nonnas with dementia often have their long-term memories intact despite everything newer being a mess. “New” doesn’t have to be last week, either – it can apply to anything within the last, say, 30 years. As a result, it’s not uncommon for them to revert back to a much earlier time in their lives. Your 97-year-old nonna may truly believe she’s actually a broke twenty-something living in a one-bedroom with her dog Max and debating about whether or not to paint over her accent wall. She may look in the mirror and feel both confused and deceived, as there’s no way she could possibly be staring at her own reflection. She could look at her son, a grown man, and wonder why this creepy middle-aged guy is calling her “mom” – her baby boy isn’t even walking yet!

As caregivers, we have to be willing to let go of what was to sanely and effectively embrace what is. Trying to convince your mom that she is home will only further instigate an argument that you will never, ever win. Even if you’re fortunate enough to be able to bring your dad to the home he seems to miss, it likely won’t suffice; he’s yearning for the life he lived there, too.. for the friends that surrounded him and the times that they shared together.

As difficult as I know that it can be, try not to fight with your nonna when she insists she doesn’t live with you. Instead, ask her about her home and what she loves the most about it. Encourage your nonno to share stories of his angsty teens. Put yourself in their shoes and empathize with their confusion. If I woke up in a strange place with same-colored walls and an 8lb poodle at my feet claiming to be Max, I would be crazed, especially if imposters insisted I was home.

*note: to my future husband, if you happen to read my blog.. you’d better plan on moving to the apt pictured above because i want this to be my life forever. sorry in advance for the zebra print.*

Nebbia

January 2, 2015 ccandido1 Passion alzheimer's, caregiving, dementia, fog, nebbia, senior care, senior helpers, VDT, virtual dementia tour, vision

Un po’ di nebbia a Venezia ❤

At my new job, we have a “lending library” of activities caregivers can use with clients that are so fun and that remind me of those I’ve used in the past. For instance, a popular memory game we’d play in Italy involved naming a fruit, a city, and an object for (almost) every letter of the alphabet. I especially enjoyed playing with one of my favorite nonnos, who was always happy, playful, and excited to participate. We would laugh so hard! There were numerous times, however, when he’d be stumped (and understandably so! Can you name a fruit that starts with z?!) When my love was unsure of an answer, he’d respond with “nebbia” to let me know he wanted a pass. Nebbia actually translates to “fog;” his mind was cloudy. His thoughts were also foggy when asked the names of his grandchildren and, occasionally, even his own kids.

What a powerful analogy. I’ve worn contacts since I was 12 years old and I am frighteningly helpless without them: I have no idea who I’m looking at, driving is a form of Russian Roulette, and I’m actually afraid to be up and moving around because I have such a hard time seeing that navigating even familiar surroundings is dangerous. Worse yet is that I know it shows… it’s mortifying! That being said, I can’t imagine my mind being foggy on top of my vision. If I can respond “fog” to an ophthalmologist and feel ashamed, I cannot fathom admitting I’m unclear about my brothers’ names.

A great friend of mine recently shared this video with me: http://youtu.be/QEmBmokHU3Q. It demonstrates the Virtual Dementia Tour, which is a method of instilling awareness and increasing understanding of the effects of dementia. The VDT uses sensory tools to mimic the fog that is created by Alzheimer’s. I am dying to try it, especially after seeing clips like the one above. I’ll be sure to wear my strongest contacts when I finally do :-O

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.

Soo This is Awkward…

December 4, 2014December 17, 2014 ccandido1 Passion a dignified life, alzheimer's, american girl in italy, awkward, dementia, making out, nutella, paula spencer scott, ruth orkin

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

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

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

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

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

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

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

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

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.

A Dignified Life

October 16, 2014 ccandido1 Print a dignified life, alzheimer's, best friends, caregiver, dementia

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