alzheimer’s from the inside out

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.

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.

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.