paula spencer scott

Rainbows & Tornadoes

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

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

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

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

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

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

Dr. Charles Dodgen

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

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

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

Paula Spencer Scott

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

You Don’t Live Here?

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After having spent this past weekend revisiting my beloved VV, I’ve been thinking a lot about the incredible people I encountered during the months I lived there last year. There were nonnos and nonnas I cared for, mentors that became friends, and landlords that made me feel beyond welcomed. In addition, there were acquaintances I’ll never forget. One in particular was the owner of a tiny newsstand I’d pass on my morning walk to the train station. We never actually had a conversation, but every single day without fail we’d smile and wave to one another.. we’d exchange a quick, warm “Buongiorno!” that I still think about frequently. No matter the weather or how busy he was, I made sure to stop as I passed until we’d both said our hellos. It sounds so silly, but it was the perfect start to my day; without so much as knowing his name, this friendly, compassionate nonno became a source of comfort and happiness – a man I truly looked forward to seeing as I began my commute to work. Naturally, I cried my eyes out when it was time to say goodbye (slash actually introduce myself :O ).

What was it about this stranger that touched me so deeply? How was our AM ritual even initiated? Why did I crouch down to make sure he saw my wave through the awning, and why did he look for me in the first place? The answer, I’ve determined: I have no idea. Perhaps I found comfort in the fact that he so enthusiastically greeted me, a foreigner who was completely alone and who didn’t even buy his newspapers. Maybe it was his smile and the warmth it exuded. Who knows? There’s not always an explanation as to why people make us feel the way that they do. This is especially true for those who have dementia:

“A rose is still a rose, and smells as sweet, even if you don’t know what that pretty pink fragrant thing that cheers you up is called.” – Surviving Alzheimer’s

I’ve quoted that excerpt before, but I’m even more in love with it now. Scott stresses that even after names and relations are lost, your presence itself remains a source of cheer, comfort, and de-stress. Six months have passed, and to say I adore my residents at Il Sogno is an understatement. From the moment I walk in the door, before I even put down my keys, I’m kneeling beside them at breakfast. I’m greeting them one at a time, playfully eyeing what’s on their plates. I’m complimenting their bouffants (do old ladies all sleep on their faces?! WHAT IS THEIR SECRET???) and kissing their cheeks.

Despite our encounters, I would confidently say that a solid 70% of them have no idea what my name is. No matter how much we interact, I’m pretty sure they’ve got no clue why I’m there. As I was reminded of this evening, I don’t think anyone knows where I live (“You’re driving home? You don’t live here in the building?” O Dio!). What I do know, however, is that our faces light up when we see each other.. that we laugh like crazy (often at my expense).. that we confide in each other, and we embrace like we’re old friends. As eagerly as I run to them in the morning, I know in my heart that they’re waiting for me.

“People with dementia are particularly attuned to the care partner’s tone of voice, facial expression, volume, and hand gestures. Body language counts! It is as if you are speaking to someone who doesn’t speak the same language as you – he or she is looking for cues and clues from the encounter and not relying completely on your spoken words.

The person may not understand your words and may not always recognize you, but he or she still recognizes the positive intent of a smile, a handshake, or even an inviting and open posture.” – A Dignified Life

My newsstand nonno and I did not speak the same language, so we obviously didn’t rely on spoken words. We did feed off each other’s compassion. We conveyed mutual excitement and met one another with kindness. I don’t know his name, I have no clue where he lives, and I’m not sure why he was so nice to me, but I will never forget him or how he made me feel. I hope the same holds true for my loves. ❤

Mi Senti?

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So, we know from past posts that my favorite Italian expression is the deceivingly complicated “Dimmi tutto.” The one that’s most ingrained in my mind, however, is more straightforward: “Mi senti?” Working with the elderly requires a unique set of skills. Patience, empathy, and compassion are important, but none are as crucial as a loud voice. (*note* a sense of humor is also essential.) One must master the art of deciphering verbal and nonverbal cues indicative of hearing loss and/or lost hearing aids. In addition to being heard, they must be understood.

Have you ever spoken to someone whose accent made them tough to follow? Or smiled & nodded when you had no idea what a person said, praying that they hadn’t asked a question? Better yet, have you asked “What?!” so many times that you feel bad and give up, eventually pretending to have gotten it? Whether hearing impaired or not, there’s a lot that goes into effectively conversing with one another. Throw in a little confusion and memory loss and things get full blown messy.

I recently spent about an hour sitting and chatting with a group of residents. I’m not always awarded such luxuries, but it was a Saturday and my manager-on-duty shift was long over. I was so pleasantly surprised by what went on: they told stories, shared complaints (none about the staff, obv <3), laughed with one another and truly seemed to enjoy themselves. Don’t get me wrong, this isn’t completely abnormal, but there were new, more timid residents in the group as well as two or three who aren’t particularly fond of each other. Things went so smoothly and I had such a good time that even by 7PM on a weekend, I didn’t want to leave.

What made this evening different? They could hear each other. I encouraged more loves to join our impromptu café party, but I otherwise stayed out of it. I did, however, intercept if anyone’s comments went unnoticed. I repeated what they’d said and made sure we weren’t talking over each other. For those harder of hearing, I used my body language and nonverbals to make things clear. When I was involved, I was truly, enthusiastically, passionately engaged, and it spoke volumes.

 “People with dementia are particularly attuned to the care partner’s tone of voice, facial expression, volume, and hand gestures. Body language counts! It is as if you are speaking to someone who doesn’t speak the same language as you – he or she is looking for cues and clues from the encounter and not relying completely on your spoken words. Examples of positive body language include smiles, offering a handshake, hugs, and standing tall with enthusiasm!” – A Dignified Life

When you don’t hear somebody, it’s frustrating.. it’s as though you’re wasting time. Not being heard is just as bad. I’m learning more and more that regardless of our age or mental status, understanding one another is exceptionally important: being on the same page in interactions, in relationships, and in life is crucial. When my loves don’t hear each other, miscommunications turn into arguments. Frustration leads to anger and confusion to sadness. It’s a downward spiral you can’t climb up from.. it ruins the whole day (well, some “days” shorter than others, but still). Save yourself the heartache and make your voice heard. Listen when you converse and make a true effort to be on the same page. You never know what kind of parties you’ll miss out on otherwise.

Soo This is Awkward…

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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. 😛

No Prescription Necessary

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Although I’ve been here for nearly two months, most of my friends still crack jokes about the “work” I’m doing (or lack thereof). They affectionately laugh at how when I cry my eyes out on my last day, the patients will have no clue who I am or how long I’ve been with them. How much of an impact can I really have on those suffering from this disease while I’m here in Italy? Even my former boss, whom I admire, adore, and miss every day, asked before I left, “Won’t they just come up with a pill for that eventually?” My efforts, though maybe not entirely useless, couldn’t possibly make any lasting impressions or meaningful advancements.

I can’t blame them. Our world today revolves around pills, no matter the method of obtainment or administration; the stigma is on counseling, not prescriptions. “After all, you don’t go to the doctor for advice, you go to the doctor for a pill. Roots, fruits, and exercise don’t cure diseases – pills do. If you are sad and don’t want to be, take a pill. If you want to be happier, take a pill, or quicker yet, snort one, or the quickest of all is to inject it right into a vein. Pills, pills, pills.” Dr. Taylor’s sadly right.

Believe me, I’m not anti-meds – I have ovarian cysts and I’d sell my soul for a painkiller if I didn’t have one on me during a rupture (TMI?!). To have a pill that would reverse or halt the effects of Alzheimer’s would be beyond incredible, but for now it simply doesn’t exist. Discovering some miracle tablet isn’t that simple, either:

“The truth is that we do not know nearly as much as we think we do about how and why the ‘normal’ brain works. We have some ideas. We have some tests. We have some medications that seem to change behavior by changing the chemistry in the brain. How or why they work is, again, a matter of speculation. We don’t fully understand the chemistry in the first place. How can we figure out what is wrong when we can’t explain what is right?” – Dr. Taylor

According to Paula Spencer Scott, “It’s been 10 years since the newest FDA drug was approved. Even current medications for memory are modest in their impact.” She points out, however, that socialization is treatment for Alzheimer’s disease:

“Boredom is the enemy. If nothing is going on, it often leads to the challenging behaviors that we see – agitation, aggression, crying, wandering.”

I can’t offer a magic pill, but I can provide companionship. I can foster intimacy, closeness, and comfort. We are social by nature, and it is essential for human beings to regularly experience emotional intimacy in order to develop and maintain good mental health. Though of course to only a certain degree, I can empathetically cross the border into Alzheimer’s land:

“When people are very old and deteriorated, no one enters their world – they’re often just sitting there. They will withdraw inward more and more, their desperate need for connection all inside. Here’s a person who has worked his or her whole life, contributing their whole life, who needs that connection again to feel a sense of worth. They’re longing for closeness.

Validation is a way of communicating with very old people who have Alzheimer’s-type dementia. It restores a feeling of dignity and self worth. It’s a way of being with them, feeling what they feel. You pick up their emotions and reflect them back. People who are validated feel safe.” –Naomi Feil

When I laugh with my friends at my own expense, I’m comforted in the fact that I see improvements every single day. Even if you think you’re not making an impact, you are. Don’t ever feel as though your presence, forgotten or not, doesn’t matter. The mood boost of having seen you can in and of itself be huge; “your loved one may not know why she feels happy (from seeing you) but she does. Your presence is cheering, comforting, and de-stressing. A rose is still a rose, and smells as sweet, even if you don’t know what that pretty pink fragrant thing that cheers you up is called.” – Paula Spencer Scott