Are You Essential?

Another month has passed, and it feels simultaneously like everything has changed and nothing at all. In the senior living world, we’ve received new guidelines to follow and are in the process of dissecting a complex, verbose, somewhat disheartening 41-page Executive Directive. It outlines what each stage of our phased-in approach to reopening will look like, as well as what parameters must be met in order to advance. At first glance, I was thrilled to see that indoor visits would again be permitted; as nice as the outdoor ones have been, they’re completely dependent on weather and it’s so hard for residents to hear their loved ones from 6ft apart and with all the background noise. As I read on, though, my excitement faded.

Indoor visits are to be limited to “essential caregivers”. In other words, there are very specific people who will be able to enter the community (and for very specific reasons). Each resident can have up to two adult ECs total, regardless of how big their family is. In order to be considered, one must apply and explain why they feel they are essential. Once accepted, they can visit up to twice a week for two hours per visit. Of course, they’ll have to be pre-scheduled, screened, COVID negative, and in full PPE.

So, what does it take to be considered essential? According to our governing body, an EC is someone who was “previously actively engaged with the resident or committed to providing assistance with activities of daily living”. Some examples provided by the DOH include a family member who visits twice a week to assist a resident with a shower, an individual who visits weekly to fill the resident’s pill box, and the like. Oh, you know, just the stuff they moved in with us to get help with in the first place. The things their family could no longer manage, hence them ending up in assisted living. Makes sense.

ECs can’t come just to hang, either; there must be an essential reason for the visit, which is forbidden from being social in nature. They have to be providing assistance with a task that they helped with prior to COVID, like cleaning hearing aids or shampooing the carpet. Changing sheets and cleaning out refrigerators count, too. Again, these are actual examples provided by the DOH.

You know what’s essential? Human touch. Hugging your family, including your great grandkids who are under 18 and can’t make the cut. Socializing with your friends is pretty important, too, while we’re at it. Sharing a meal together. Stepping foot outside of the same apartment you’ve been trapped in for 5½ months (without being told to turn around & go back). Having the right to choose which risks you’ll take. Living out the rest of your life with dignity and love, on your own terms. All essential. Not one on the list.

I feel more helpless now than I have this entire pandemic.

Operation Green Sheets

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One of my favorite nonnos of all time passed last week. He was hands down the most spirited, loyal, fun-loving resident I’ve had the pleasure of serving, and he adored his wife. No matter the circumstance, he’d support her blindly. They’d dance to any song and, if separated, he was beside himself. During a brief stint in the hospital (for her), he sat in the lobby from morning until night awaiting her return. Literally, he didn’t move (except to yell into my office every hour for an update).

My “boyfriend” was also extremely headstrong, and he and his beautiful wife both lived with dementia. When she had an idea in her head, she’d rile him up and they would fixate on it. Dementia is so f’ing weird – they’d forget that they ate breakfast but despite my prayers and redirection, they’d remember every detail of these delusions. I’m cracking up at the thought and at the memory of them standing in my office, him raising his voice (& sometimes his middle finger) and her egging him on.

One of my favorite stories of Mr. & Mrs. M came to be fondly referred to as “Operation Green Sheets”. One morning, they came to alert me of a probable theft: their daughter-in-law had bought them a set of green sheets, which were now missing. Thankfully, I had a great relationship with their two sons, who were insanely understanding and supportive. I know it’s horrible to say (but I always say it anyway) – I’ve seen a lot of amazing, involved daughters, but those really good, patient, helpful sons.. they’re a dime a dozen (sorry, boys). These two are exceptional. A quick text confirmed there was not, in fact, a green sheets delivery. We laughed it off, reassured them that they were in the laundry, and hoped they’d be forgotten by morning.

To our disappointment, these were the most memorable made-up sheets in the history of fake bedding. A few days passed with constant calls, visits, and middle fingers. I was out of excuses and there was no appeasing them. I sent the boys two shades of green and by the grace of God, they picked the right color – they arrived via Amazon Prime the next morning and when delivered, my loves shouted in unison, “That’s them!”. Crisis averted, and this time without the help of the police (I’ll save that story for another post 😉).

I was only lucky enough to spend a brief time with Mr. M. However, I don’t need to have known him forever to be certain the world will be a duller place without him. I will be always grateful for his lessons, laughs, love, and even middle fingers. May he rest in the sweetest peace. ❤

Outdoor Visits: Expectation vs Reality

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What an insanely hectic week it’s been. Last Tuesday, after 103 days, our residents were finally able to see their families again. After careful thought, preparation, and State-approved plans, we announced that visits could be scheduled once a week (per resident) for a half hour at a time. Appointments were to take place outside (at six feet apart, of course) and masks would be a must. We had it down to a science and couldn’t wait to hit the ground running. Many visits would be a surprise (!!), and we excitedly imagined how our loves would react. In true form, the reality of what transpired did not quite match our expectations:

  • Expectation: At first glance, residents will burst into tears of joy.

Reality: Masks really make it hard to recognize somebody, especially if your vision’s poor. Of the countless visits we hosted this week, one resident spotted her daughter and cried. She also knew ahead of time that she was coming.

  • Expectation: A half hour will be way too short; when the timer goes off, they’ll still be mid-conversation, having barely scratched the surface of all there is to catch up on.

Reality: Awkward silence after about seven minutes (at least for most, others made it a bit longer). When you’ve done nothing for three months, it turns out there’s not much to talk about!

  • Expectation: Families will be so careful not to potentially expose their loved one to illness – they will abide by all rules, no questions asked.

Reality: Um, did anyone actually read the guidelines? Also, how old are we? Take your eyes off visitors for one second and suddenly masks become chinstraps & butts leave their seats.

  • Expectation: I will be a silent chaperone; I’ll supervise each visit from my post but will not otherwise be involved.

Reality: I’ve done more cardio in each half hour time slot than I do with my new personal trainer in a week. When not jumping from my chair to enforce social distancing, I’m “translating” messages from soft-spoken visitors who seem to have forgotten that they must shout (especially when six feet apart).

  • Expectation: One visit per week will not be nearly enough.

Reality: One visit per week will not be nearly enough. Although they haven’t lived up to our expectations, they’re absolutely perfect, and my God, are they worthwhile.

I Wish

Well, another month has passed and unfortunately not much has changed. Our residents remain confined to their apartments, safe from COVID but increasingly depressed, deconditioned, and restless. Toward the end of May, the State mandated that NJ facilities swab all residents and employees twice; once as a baseline, then again within 3-7 days of the first test. We were given very little notice and even less support. By less, I mean none: we were required to obtain our own tests and come up with a plan for administration. Labs are drowning and errors are inevitable. The expectation was that insurance would cover tests (fingers crossed), but if someone didn’t have benefits, our facilities were expected to front the cost.

While the amounts of time and money spent aren’t irrelevant, they pale in comparison to some other implications. Take fear, for instance. Our anticipatory dread was not only for the odd sensation and subsequent pain you feel when a plastic rod is swabbed so far up your nose it scrapes your throat, but also for the outcome; we were terrified of the results.

As an employee, if you refuse to be tested, you’re off the schedule. No exceptions. Residents, on the other hand, “can decline” but there’s a catch – they’ll have to remain on total isolation, regardless of how and when we start opening up. We at least knew what we were in for – when I explained to the team what to expect, they understood. They braced themselves. Some needed to take a seat, others took a few tries before their specimen was collected. But we knew what we had to do and got it done. The residents were another story.

I’m grateful to have been present for every single swab. I informed my loves of what was coming and cheered them on, making every attempt to ease their nerves. Most were troopers (some didn’t even flinch!), but overall, it was brutal. As we went room to room, we were met with screams, cursing, and confusion. Some begged for it to end. As tears welled in their eyes, some pushed the swab away. Absolutely brutal, and that was only round one. Rumor has it there’ll be several more.

As I hosted my weekly hallway meetings on Friday, I informed residents that it’s likely we’ll be required to continue testing weekly. In true form, I remained positive and hopeful. I stressed the importance of regular swabs and commended the health department’s intentions. “This is part of their plan to let us open up”, I assured them, “sooner rather than later”. I totally f’ing lied, and honestly, no one’s buying it anymore.

I wish whoever makes these rules would spend one day in a facility. I wish they had a clue what total isolation feels like to people who – at this point – would rather die than drag out such a painful version of their end of life. I wish I had better news for the residents and families hanging on my every word.

The Balancing Act

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I know there are tons of memes floating around about how long the month of April’s felt, but truthfully, it’s flown by for us. Having been on lockdown for 7 full weeks, we’ve settled into a new normal – it’s a heartbreaking, scary, never-ending punch to the gut normal, but normal nonetheless. We’ve got it down to a science: meals and activities in apartments, weekly update calls to families, Friday hallway meetings, and alllllll the PPE. All things considered, we’re doing okay: less than 5% of our residents have tested positive (*knocks on wood*) and only one employee’s been sick. We’re working our butts off and doing everything in our power to keep corona out.

Behind closed doors (as in, the doors of my Civic where I sob on the ride home), it’s been a rollercoaster. Managing a senior living community during this pandemic requires an emotional balancing act:

  • Fear vs. Courage: Fear isn’t exactly motivating and leading with it does not empower others. It also disrupts our ability to think rationally. As terrified as we are every single day, from the moment we step foot in the community, we put up a brave front. We comfort residents (& each other!) and foster hope. Business is carried on as usual – with dignity and love – regardless of exposure.
  • Failure vs. Success: We’ve had three positive residents. In comparison to nearby facilities who’ve reported over 100, we’re killing it (no pun intended). But the truth is, even one is too many – one is enough to make you feel like you’re a total failure. It’s nothing short of devastating and is impossible to not take personally.
  • Denial vs. Acceptance: When we got the call about our first case, the local health department assured me it was never a matter of IF – it was WHEN. In my heart, I know that’s true; COVID is spreading among our elderly population like wildfire. That doesn’t make it any easier of a pill to swallow. Every day, I ask myself how it could’ve happened – we have no sick team members! We screen employees before they walk through the door! Residents haven’t left their apartments in over a month. HOW?!
  • Physical Safety vs. Emotional Wellbeing: God, this one’s tough. I truly believe we’ve kept ~95% of our residents COVID-free because of the extreme precautions we’ve taken. We were one of the first to lock down and have been sporting our N95s since March (long before we were advised to). I know we’re doing what’s necessary to keep my loves physically healthy, but what about emotionally? I’m notorious for weak moments and ridiculous ideas: this week, I’m seriously considering roping off our front porch and sneaking them out a side door so they can feel the sun and get a whiff of spring. They need it so badly.

We may not be able to get back to our old normal anytime soon, but I’m certainly over this one. Here’s to hoping May brings good health, joyful reunions, and some emotional stability.

Silver Lining

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I am so sick of Coronavirus. Not only do we eat, sleep, and breathe it at work, it’s also all over social media. There’s no escaping its emotional, anxiety-inducing wrath. Tonight, however, I’m focusing on the positives – the silver lining. Despite the restrictive, isolating precautions we’ve taken to keep our residents safe, in many ways, we’re all thriving (*knock on wood*): morale is up, falls are down, and, thank God, we remain in our COVID-free bubble. Below are my top five positive takeaways so far:

  1. Our residents are not afraid. In fact, some think we’re being “soft”. Feedback as to why seems to vary: on one hand, many of them have experienced much worse. While this war is invisible, they physically fought in theirs. On the other, they’re over it (and by it, I mean life). They’ve chased dreams and accomplished goals. All of them are tired, most are ready.
  2. They’re making the best of it. I’m continuously amazed at how well our residents are adapting, regardless of the changes we spring on them. New developments are reported daily and, as a result, stricter precautions are implemented. Though essentially quarantined to their apartments, our nonnos and nonnas are finding creative ways to have fun: they’re bonding with neighbors from their doorways, belting out oldies, and learning to FaceTime with family. Like giddy college kids with a curfew, they’re even sneaking around (which we as RAs enforcing social distancing don’t appreciate).
  3. I’m learning a ton. Having worked for a company that was pennies from bankruptcy, I’m used to getting by with limited resources. What I’ve never had to do, though, is hair. When one of my favorite nonnas insisted our beautician was “essential”, I couldn’t contend; when you look good, you feel good, and we’re committed to keeping spirits high. All I can say is thank God for YouTube and Aqua Net.
  4. We’re connecting more deeply. As much as I make it a point to spend time with my loves when things are “normal”, nothing holds a candle to the bonding we’ve done this month. Research suggests that traumatic experiences may actually have positive social consequences, acting as a sort of social glue that fosters cohesion within groups. We totally support that hypothesis. ❤
  5. Similarly, the love and support are overwhelming. From our residents and their families to our corporate team and local officials, I feel thankful beyond words. Our Police Chief checks in almost daily, the mayor biweekly. We’ve received countless donations and infinite praise. To say we’re committed to fighting this virus together would be an understatement.

To be clear – despite the above, I’m still f’ing sick of this. Looking forward to recounting all the silver linings and celebrating our return to normalcy very soon.

Acceptance

February has been quite a month. The leap year’s brought with it not just an extra day, but two pulled fire alarms, one elopement, a pair of microwaved underpants, and an unexpected quarantine. Each situation has been accompanied by some difficult conversations and, in some cases, a lot of paperwork. Per usual, they’ve also sparked reflection; I’m realizing more and more that one of the greatest challenges we face as caregivers is acceptance (& not in the general sense).

Once there’s been a diagnosis of dementia, the past starts to make more sense. Hindsight, as they say, is 20/20; with clearer vision and some explanations, we can start to act accordingly. But do we? It’s not as difficult to accept the diagnosis itself, especially when its symptoms are so noticeable. It’s the consequential lack of logic that we can’t grasp – the absence of practicality.

In our present-day social media culture, we value self-justification. We crave recognition and fear judgment. We overthink everything. Such attitudes are useless when it comes to dementia. One of my feistiest nonnas pulled the fire alarm twice in one week. Her family’s response? She thought it was Sunday and wanted to go to church. Oh, of course. Another resident walked out the front door “to go home”. The justification? She used to live in a complex with a clubhouse and she likely believed she was there. My absolute favorite was the underwear. The sweetest, most pleasantly confused nonno microwaved his tighty whities around midnight, and his family was certain that, although he’d never done this before, he simply felt they were wet and needed to be dried. For the record, not one had any recollection of their behavior afterwards.

There are no rational explanations with dementia. Certainly, there are unmet needs, but there is no normal logic. Behaviors can’t be justified the way our brains long for them to, and it’s okay for us to accept that. In fact, it’d make our lives much easier.

OH! As for the quarantine – it’s me. My future sister-in-law and I coincidentally traveled to Italy the weekend there was a coronavirus outbreak. As a precaution, employees who’ve been there lately are mandated to stay home for 14 days. Logical, but not eagerly accepted. 😦

Even When It’s Long, It’s Short

I’m not exactly a big basketball fan. We had season tickets to Seton Hall games growing up and I loved attending, but mostly for the food and camaraderie. I also played point guard in middle school but have literally no idea what the position entails (as my family can attest, I had no clue then either). That being said, just like the rest of the world, I’m sick over the passing of Kobe Bryant. I don’t know if it’s that he was with his daughter, or if it’s the other young passengers onboard, or maybe the way it happened (I’m afraid of flying).. but I’m so, so sad.

Ironically, this past week was spent in Southern California on a work trip. A few of us split an Uber to LA and visited the Staples Center, and I’m so happy we did; the makeshift memorial was simultaneously devastating and peaceful. It was so beautiful, in every sense of the word.

As someone who works with people at end of life, I can attest that even when it’s long, life is short. The years we’re healthy and able-bodied are scarce. We can’t waste them. We can’t wait for devastating reminders of our mortality to start truly living. Everything can change in an instant; death is not the only precursor to finality.

Rest in Peace ❤

Face Value

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When caring for a loved one with dementia, you’re often faced with situations that don’t seem logical; they’re far from “normal” and can be downright confusing. In fact, most lack “common sense” altogether… at least at face value. Working in the field, one of the most important lessons I’ve learned is that nothing is as it seems. Today, for the millionth time, it was reiterated by one of my favorite nonnos.

In the senior living world, the word investigation is part of our everyday vocabulary. Unusual behaviors? Investigate the unmet need. Frequent falls? Investigate environment, meds, and other risk factors. As time consuming as they can be, investigations are also super practical, especially when faced with puzzling scenarios. There’s a level of formality we associate with them that isn’t always necessary or applicable. Sometimes an open mind, creative thought, and a little digging are all you need.

There have been some concerns about the hygiene of the nonno I mentioned. Other residents have been complaining that he stinks and he always looks unkempt. Though in the earlier stages of dementia, he is fiercely independent and doesn’t let us help him with anything; we can’t so much as lay out his outfits in the morning without a fight. Oddly enough, when by the grace of God he lets us do routine skin checks, everything looks good. His hair and beard aren’t oily, either, but the odor he emits is pungent. He swears he showers regularly, but how could that be?!

Cue investigation mode. I thankfully have a good rapport with my sarcastic, headstrong love, so I felt comfortable being honest with our concerns (in an extremely kind, empathetic way, obviously). It was immediately apparent that his clothes were filthy. He admitted to keeping them on for a few days and thinking nothing of it, which is not uncommon with dementia. When I affectionately offered to pick out a fresh outfit for dinner, though, I discovered the most pressing issue: he has nothing to wear. Aside from a pair of cargo shorts and a ripped, medium-sized t-shirt in his closet (he’s an XXL), there was next to nothing to choose from. In his mind, however, that didn’t matter – he had clothes on his back and, thankfully for him, a poor sense of smell & self-awareness.

A pep talk, some hand-me-downs, and a phone call to his POA later, I left him with the agreement that he’d continue bathing regularly and change his clothes every day. I held my breath for the rest of the afternoon until I heard him roll out of the elevator. To my most pleasant surprise, he changed for dinner! Had we continued to take this situation at face value, I’m confident that it would’ve gone an entirely different route.

The fact that this nonno never mentioned his dilemma makes no sense, but with dementia, nothing does. Whether he was too embarrassed to bring it up or just flat out unbothered is irrelevant; what’s important is that we gave him the benefit of the doubt and dug deeper. We nixed face value and investigated, and I can confidently say we’re all better off for it.

There’s a First Time for Everything

It’s no secret that I’m a big proponent of therapeutic fibbing. I’m also known to use obituaries in my favor, especially when comforting residents and referencing family members (seriously, what a resource). Last week was a first for me, though – I not only Googled the obit of a nonna’s recently deceased boyfriend, I edited it. I copy & pasted it into Microsoft Word and made some subtle (yet major) alterations, and it was a game changer. It sounds way worse than it is, I promise!

On Monday, the daughter (“D”) of one of my feistiest loves came to my office beside herself. Her mom’s partner of nearly 25 years had just passed, and if that alone wasn’t stressful enough, she had a rocky relationship with his family. If I’m being honest, his kids despised her. She unfortunately wasn’t welcome at his funeral (nor was she mentioned in his obituary), and D had no idea how she’d break the news. While her mom has dementia, she’s in those earlier stages; she understood he died and was calling constantly to find out service details (and, of course, about her obit shout-out).

After a quick search, we pulled up the article together and put it into a blank document. Thankfully, D was on board with my unconventional plan; though there was no malintent, I knew the suggestion to doctor an f’ing obituary could be taken either way. She agreed the truth would do more harm than good, causing Mom some serious heartache (and resulting in a ton more phone calls). Ten minutes and one “in lieu of services..” signoff later, D was off to break the news. Different news than she’d planned, but news nonetheless.

I visited with mamma the next morning and my heart sank as I walked in to this:

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On her kitchen counter displayed proudly was a photo of the two of them and our infamous obituary. “I must’ve rubbed off on him,” she said – “I always told him funerals were a waste!” Our approach had been unusual but its results were extraordinary. With the purest intentions and her feelings at heart, we spared my love of some serious (and frankly at this point her life unnecessary) anguish. Once again it was confirmed that therapeutic fibbing can be a savior (as can the Internet and an obituary shout-out).