a partial view

TSA, It’s Me Again…

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hem

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.

Robin Williams & Dementia

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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

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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

Which Floor?

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Have you ever walked into a crowded elevator and had the awkward trying-to-reach-it-yourself-slash-hoping-someone-steps-up-to-push-the-button encounter? You know.. the cute, “Which floor?” that’s often followed by small talk or a joke about how cramped it is? Aside from the occasional fumbling, it’s usually pretty painless. This morning wasn’t one of those times.

Just before lunch, a man visited Il Sogno on his in-laws’ behalf. We chatted for a while before touring the community and meeting some nurses and residents. As we made our way upstairs, one of my loves joined us in the elevator. I asked which floor she was heading to, to which she replied without hesitation “the basement.” Va bene! From the ground level, the three of us cheerfully went up to 2. My visitor was confused; “What’s in the basement?”

Not only do we not have a basement, we apparently do have crazy sales managers (sono io!). Once we were alone, I explained the reasoning behind my acquiescent response. In even the earlier stages of dementia, reality orientation can be distorted and words confused. A second floor apartment could be mistaken for a lower level’s. Not bad, right? We can politely correct the mix-up and move on? Nope. Per favore, don’t do that. There are a few reasons why:

  1. You will not win that battle. I’ve posted about this before, but it’s essential that this point be understood. Another nonna was insistent on Monday that her car was parked outside and someone needed to check on it. I overheard family members reassuring her that her beloved Cadillac, which was sold years ago, was in good hands. They reminded her (with noticeable frustration) that they’d had this conversation earlier and she knew the car was gone. Her reaction? Utter confusion and, as a result, anger.

As dementia sufferer and former professor Cary Henderson wrote:

“You can’t build on experience. No two days and no two moments are the same.”

Dr. Taylor reiterates:

“It is virtually impossible to win an argument with an individual with dementia. … Trying to present an argument or convince the person of a particular point of view will lead to frustration and failure. Also, confrontation will only cause the person to be more defensive, further harming communication.”

  1. You will do more harm than good. I promise you, I understand how insanely heartbreaking it can be to watch a loved a one helplessly decline. You want to fix things; you’re dying to save them. Reminding them that they’re wrong, however, won’t help their mind – it’ll hurt their feelings. Imagine being told (by someone younger than you, no less!) that you’re mistaken about something you’re certain of.. or hearing, in so many words, that you had a conversation you know never took place. Has everyone else lost their minds?!

“Every time I have a feeling that I’m losing – losing contact, losing my brains, whatever it is, I panic. I think the really worst thing is you’re so restricted. … You just feel that you are half a person and you so often feel that you are stupid for not remembering things or for not knowing things.”

–Cary Henderson

Paranoia is often an accompanying symptom of this disease, and understandably so:

“I would just chalk up paranoia as one of those feelings which is basic to Alzheimer’s people. The feeling of frustration, the feeling of having missed something. It’s real big. It’s heavy. We miss a lot of things and there are times when I feel like people are plotting against me. … I think paranoia, if I’m reading this right, almost has to be something that’s very basic to living with Alzheimer’s.”

–Cary Henderson

There are going to be mistakes. There’ll be moments of confusion (and some of clarity <3). There will without a doubt be instances when your nonno is flat out wrong. Agree with him anyway.

“My advice to people who are caregivers is that…really…just keep things under control. Keep things easy to understand – not baby language or something like that. Don’t talk down to us. … [We] make an awful lot of mistakes – just try to bear with [us] and correct [us] gently. … There’s no sense in fussing at [us] anyhow – because I don’t believe [we’ll] understand what the problems are.”

–Cary Henderson

Let go of the little things and choose not to argue. It’s one of the most important lessons I’ll ever attempt to teach, and it can’t be stressed enough. Will running outside to “check on a car” truly ruin your day? Will correcting your nonna make it that much better? If you take anything from this blog, I beg you, take the ride to the basement.

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.