caregiving

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.

Hi, This is My Grandmother!

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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.

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.

Lonely or Alone?

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Have you ever heard the saying, “Being alone doesn’t mean you’re lonely, and being lonely doesn’t mean you’re alone”? The psych grad in me is cringing – I can’t find its source to cite it anywhere! Though it’s only been a month, working at Il Sogno has already taught me an incredible amount of information, much of which relates to the aforementioned quote.

It’s no secret that the value of personal connections is immeasurable. In fact, it has been found that social engagement is a more potent predictor of health and longevity than is our age, chronic disease, or even risk factors like smoking cigarettes. In its absence, studies confirm there is an increase in depression, blood pressure, cholesterol, heart problems, cognitive decline, and even Alzheimer’s disease. Loneliness, then, is not only depressing; it’s unhealthy.

Luckily, we have just under 90 nonnos and nonnas residing at our community. Between the caregivers, dining staff, managers, and nurses, I couldn’t guess how many employees there are; one thing we’re not is desolate. But is that enough? As my mystery saying alludes, warm bodies don’t fill voids; loneliness is not necessarily defined as the state of being alone, but rather as a lack of intimacy. There is no significant relationship between solitude and sociability.

Truthfully, our census is irrelevant. There are 45 million seniors in the US alone, yet nearly half of them feel lonesome. Each nonna at Il Sogno requires two types of assistance: emotional support and hands-on care. The latter tends to physical needs and is necessary (but not sufficient) for survival. Emotional support, however, enhances confidence, upholds respect, and nurtures value. That’s where our hearts come in.

“Emotional intimacy depends primarily on trust, as well as the nature of one’s relationship. It frequently involves individuals discussing their feelings and emotions with each other in order to gain understanding and offer mutual support. It is necessary for human beings to have this form of intimacy on a regular basis for them to develop and maintain good mental health.”

There is no health without mental health. Warm bodies heal the wounds, but it’s love that lifts the spirits.

“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. Something that never, ever judges me but just accepts me for who and what I am at that particular moment. Something that is not hung-up about who I was, or who I am, or who I will be. … Something that is happy to be with me no matter where I live, or am forced to live (for my own good, of course). Something that remembers little or nothing of yesterday, but does its best to make today the best day of its life and, quite unintentionally, the best day of my life.”

– my favorite, Dr. Taylor

Passionate, successful care partners exude empathy and perseverance. We focus on the present, brighten days, and practice patience. We celebrate accomplishments, seek out guidance, and give thanks. We offer more than helping hands; we fill hearts and we feed souls. With love and positivity, we partner and enrich. Grazie a Dio, we’re neither lonely nor alone.

We Need to Talk…

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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

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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 4th in Summit. To say I’m excited to hear more grab bag responses is an f’ing understatement.

Nebbia

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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

Approaching Relationships

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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.