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:

obit

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).

Obsessed

I’ve got to be honest, it’s been a pretty peaceful four weeks. I’ve been all over the map training at different communities and haven’t spent much time in my own building at all. I’ve been anxious to get into the swing of things, and for the first time tonight I felt completely back in my element: during dinner, I heard a bloodcurdling scream from the dining room. As has become second nature, I jumped from my desk without hesitation and calmly (on the outside, at least) assessed the situation. Had someone fallen? Was a Halloween costume too scary? Did this nonna see a ghost?!

I was pleasantly surprised to find that there were no injuries or apparitions. My resident was beside herself because she couldn’t find her lipstick in her purse. I’m talking top of her lungs, somehow-lost-a-shoe frantic. Thankfully, I spotted it quickly and the panic subsided. Admittedly, my gut reaction was that her response was quite extreme, not because of how upset she was but rather that she immediately got over it. There didn’t seem to be some mysterious unmet need; this nonna was truly triggered by her lipstick.

I sat back down at my desk, my “work Vaseline” beside my keyboard, and it hit me: her reaction made total sense. A quick Google search later, I was astonished to find just how many desperate pleas there are on forums regarding dementia, obsessions, and subsequent compulsions. One wife shared about her license-less husband’s AAA fixation, another about her love’s cigars. The examples were endless and caregivers puzzled.

Is it really that baffling when you think about it, though? I mentioned I have a work Vaseline. I also have a car one, a travel toiletries one, two in my bathroom, and one in my favorite coat pocket. I rub the stuff all over my face, even especially on my eyelashes. A wise old woman once told me it’s the fountain of youth (and I’m pretty sure world renowned supermodel Tyra Banks confirmed it in the early 2000s, sOoOo..). Obsession? Check! Compulsions? For sure! Panic attack if you hid them all from me? Probably, but I’d rather not find out.

I’m not the only one. One of my best friends keeps Burt’s Bees everywhere. I’ll be sitting on her couch and find one between the cushions. Some coworkers bring their chapstick into meetings. Not relatable? Think about your phone. Ever have a sudden onset of anxiety when you didn’t feel it in your pocket? Or misplace it and flood your mind with crazy thoughts like “It was stolen”? Worrying about things that mean a lot to us isn’t so outlandish. It just so happens that with dementia, the concerns are amplified; think obsessions + paranoia – inhibitions = the perfect panic storm.

As troubling as witnessing outbursts like my love’s tonight can be for caregivers, just imagine what it feels like for the individuals themselves. According to Dr. Richard Taylor, an author who lived with Alzheimer’s Disease:

“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 Dr. Alzheimer took up residence in my brain. 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 ‘Alzheimer’s personalities syndromes?’”

Dr. Richard Taylor

Studies aside, there also needs to be more empathy and patience. We all have our quirks and our “obsessions”, and none of us would appreciate somebody messing with them (real or perceived). The thought alone of even one of those Vaselines going missing has my heart rate increasing, but I find comfort in knowing (read: hoping) that someone would help me find it.

The Final Countdown

Well, it’s official: today began my final week at work. Next Monday, after a weekend of pity parties, I’ll be joining a new team and meeting ~100 new residents. Bittersweet is an understatement. While my first two years as an Executive Director have been challenging, if given the chance, I wouldn’t change a thing. Reflecting on my experience, I decided to share my top five favorite memories from the place that will forever be close to my heart:

  1. Outings: After months of searching for a part-time driver (and getting crucified in Resident Council), I decided to take matters into my own hands and learn to operate our lift bus. What was meant to be a temporary solution turned into one of our most popular activities: “Outing with Christina.” Words cannot express the appreciation I have for those who do this full-time; loading 15 residents on and off the van (in 4” heels, no less) and keeping track of everyone while we’re out is physically and emotionally exhausting, but it’s also so fun.

Lessons Learned: Wheelchairs are surprisingly maneuverable and buffets are never a good idea.

 

 

  1. Travel Program: One of the biggest reasons I take frequent trips is for my virtual chair travel program. I put together a video after every vacation and host an activity for my residents, those at our nursing home, and at local senior centers. I even take requests – if there’s somewhere a nonna always wanted to visit but now isn’t able to, I try to go on her behalf. They fuel my wanderlust and are always, without question, my greatest supporters.

Lessons Learned: Time flies and regret is heavy – do as much as you possibly can when you’re young and able.

 

 

  1. Baby G: My friend and former roommate had the most beautiful, affectionate baby boy earlier this year. We had the pleasure of hosting him and his mamma a few times this summer, and the response was overwhelming (especially on our memory unit). What surprised me most was how elated our male residents were to meet and spend time with him; admittedly, I expected the nonnas to go crazy but could’ve never imagined the way he’d make the nonnos melt.

Lesson Learned: My God, babies bring so much joy to the elderly.

 

 

  1. Rosie: If there’s one being my residents love more than Baby G, it’s our house dog Rosie. I got her as a tiny pup and played the whole foster/trial game for all of five minutes: the second they held her, I knew there was no way she’d be going back to the shelter. I finalized her adoption that afternoon. Rosie has been nothing short of a gift to not only my residents, but the staff, as well, especially given the circumstances.

Lesson Learned: Dogs really are a man’s best friend (and the perfect diversion during an ongoing crisis).

 

 

  1. Sharing Milestones: I take pride in the fact that I don’t feel I operate like a “normal” ED, and my staff doesn’t conform to the norm, either. We’ve functioned very much like a family and share so much with our residents. We do, after all, work in their home – the one that’s likely their last stop. It is an honor to strive to make the end of their lives as comfortable, happy, and loving as possible. I’ll never forget witnessing one of our favorite nonnas read the pregnancy test of my colleague and friend. Moments like these make you forget every single grievance, every late-night call, every discipline, every emergency, every heartache… every time you felt like you weren’t doing enough. I’m so thankful for the most insightful two years – for the worst experiences I hope to forget and the best I’ll always remember.

Lesson Learned: As the saying goes, do unto others as you would have them do unto you.

The Talk

Death isn’t exactly a foreign concept in the senior living world. On the contrary, it’s something so prominent that it’s brought up nearly every day in some capacity. I even just posted about it back in May. This month, however, I was faced with a unique death-related predicament that really got me thinking. We have a resident on our memory support unit who joined us in the spring. Pleasantly confused, he settled in quickly and quite nicely. His wife, however, had a really difficult time with the transition; she’d visit often and was extremely anxious, to put it lightly. Slowly, she too began to settle into her new normal. She even stopped visiting so frequently. Eventually, she stopped visiting at all.

Our resident didn’t notice – in fact, he never once asked for her. We, on the other hand, found it a bit strange until we heard the news: tragically, she had passed away at home and no one realized for quite some time. Naturally, their family was distraught. Not only did questions need to be answered and arrangements made for Mom, but someone had to talk to Dad. What would they say? How much should they divulge? How would they get him to the funeral?

As is always the case with dementia (and family dynamics, frankly), there’s no one-size-fits-all here. Being that our resident hadn’t asked about or looked for his wife whatsoever, I truthfully debated whether they should say anything in the first place. It was important to his children that he be present at her funeral, so I suggested the following:

  • Remain calm and straight forward during the difficult conversations that would follow
  • Pay close attention to his reaction, as that will determine how to proceed (i.e., discuss further or stop talking about her death altogether)
  • Be mindful of his mood; if he seems unaware or less upset than you’d expect, move on. You don’t need to stress the reality of what has happened.
  • Validate his feelings and stay with him if he needs you to
  • Ask him how he feels and if he’d like to attend her services – leave it up to him

Lastly, I stressed that while it was important to answer any questions he asked, there was no reason to go into too many details. When I was a little girl, I lost my six year old cousin in a terrible accident: she was struck by not one but two cars while running across the street. I’ll never forget the way my mom talked to me about it. I asked her if she’d seen her (which she had) and wanted to know what she looked like: “Like Nicole, only sleeping.” I was 8 – I didn’t need to know more than that. I didn’t need to know the truth; I needed love, comfort, and reassurance. The same goes for my resident.

Who Goes to a Place Called BANFF, Anyway?!

Although it’s been almost a year already, I’ve gotten four messages in the past week regarding October’s trip to Canada. I first heard about Banff from a customer at the kennel – she had gotten her husband a book of amazing places to visit and, low and behold, it was one of them. Neither of us had ever heard of the national park and we laughed as she reluctantly dropped off her dog & said, “Who goes to a place called BANFF, anyway?!” When they returned, she raved about it.

That was almost a decade ago and I could never get it out of my head. Though on the same continent, Banff isn’t exactly cheap to get to; direct RT flights from NYC typically go for at least $650. If you’re flexible with your dates and keep an eye on them, however, you can score AirCanada tickets to Calgary for under $350. That’s exactly what my friend Lauren and I did in the fall. In true form, we flew in just for the weekend (two full days) and rented a car to explore ourselves. We were not disappointed – Banff is seriously what road trip dreams are made of.

An abbreviated version of our itinerary is as follows:

Friday, October 5th

  • EWR -> YYC
  • Pick up car from Routes Car Rental
    • Shuttle required to get to Rental Car Centre (all companies)
    • $120
  • Stay at Banff Ptarmigan Inn
    • 337 Banff Avenue, Banff, T1L 1H8, Canada (1.5hr drive)
    • $450
  • Banff Gondola Ride at 6:10PM
    • $115

Saturday, October 6th

  • Emerald Lake in Yoho National Park
  • Lake Louise
  • Moraine Lake*
    • Hike to Consolation Lake from there
  • Icefields Parkway toward Jasper
    • Peyto Lake
  • Hot springs

Sunday, October 7th

  • YYC -> EWR

It’s worth noting that we chose early fall to see some foliage, but it was already full blown winter in Alberta. It was stunning to see a snow-covered Banff, but Moraine Lake* was already closed for the season and we froze our butts off exploring the others. In hindsight, I wish we’d gone a few weeks earlier. A friend of mine had recommended we take the gondola ride at sunset and I’m so glad we did; it was breathtaking. The entire trip ended up costing us under $1,000 each including flights, hotel, car, gondola, food, etc., and we really splurged. Banff, as funny as your name sounds, you were worth every penny.

Who Are You Inviting (..them for)?

gmas.jpg

Just under two months ago, my brother married his longtime girlfriend in California. While it took place in her hometown, it was a “destination wedding” for most of us on the groom’s side – we all live in the tristate area. Logistics aside, I know one of the most difficult parts of wedding planning for my brother was knowing that two very important ladies wouldn’t be in attendance: our grandmas. The trip was simply too much for them, and we all (sadly) recognized that.

No matter the distance, whether or not to include grandparents in big family events (like holidays and weddings) is a common deliberation in the world of senior care. Naturally, most people can’t imagine being without their loved one during special occasions, especially those involving traditions. Worse yet, they can’t fathom breaking the news to them that they’re not invited. Truthfully, though, when it comes to dementia, having your nonna join you may end up doing more harm than good.

Thankfully, both of my grandmothers’ minds are still sharp; the trip to Cali would’ve taken a big toll on them physically more than anything else. For those living with Alzheimer’s disease, however, physical wellbeing isn’t necessarily the concern – it’s mental health we have to consider. There’s no one-size-fits-all approach to this illness or these decisions, but I’ve come to learn that it helps to gauge how far along someone is in the disease process. If you don’t remind him, does nonno remember you’re getting married? If not given hints, does nonna know what holiday’s coming up? If the day comes and goes, will she know she’s missed it?

Parties of any magnitude can be loud, overwhelming, and super confusing for someone with dementia:

“We’re very glad, of course, to know all these people and know they love us but there’s one little thing that somebody in my predicament can probably understand: whenever there’s a gathering of people, it seems, at least in my mind, to be a lot of confusion. I just feel the need for quiet. I can only think of one thing at a time. And large gatherings, whatever they may be, are very, very hard to understand. … I could remember a lot better if there’s not much going on. I can think better. If there’s anybody else in the room, it seems like – more than just one person I do sort of lose my grip.”

Cary Henderson

Honestly, if they’re blissfully unaware of what’s to come (or keep forgetting), it’s important to consider who you’d be inviting them for. If it’s more for you and not for them, and if attending could result in anxiety and confusion, it’s best to consider not including them. I feel like a jerk even typing those words, especially since a quick Google search on the topic yields only tips and no tough love, but I’ve been on the other side – I’ve gotten grandmas ready for events they’re antsy to attend. I’ve redirected them when they’ve tried instead to stick to their routine. Even more difficult, I’ve welcomed them home and helped to calm their nerves for bed. That wind-down can be brutal, and can sometimes last for days.

Start new traditions. Bring Easter leftovers to nonno and chat about your favorite memories. Show nonna photos from your wedding while you also make a fuss over old ones from hers. Chances are, she won’t remember not being there (& she likely won’t feel sorry she missed it).

Can We Stop Being Weird About Death?

When I talk about my job, I often liken it to working in a school: I’m the principal, my department heads teachers, and the residents our students. Structurally, we’re like a dormitory with its own caf and extra offices. Apartments feature mini-fridges, lack overhead lighting, and are separated by walls that are way too thin. Assisted living is surprisingly comparable socially, too: there are cliques, residents hook up, and newcomers need some time to settle in. Rumors spread like wildfire and most rules are taken as light suggestions, especially those pertaining to alcohol and hot plates.

Some things are drastically different, though. Over the past two months, an alarming number of residents have died – 11 people passed away. Most were on hospice and all were very sick, but it’s still been brutal. Unfortunately, such is the nature of this line of work; in elder care, death itself is not unusual, but the way we handle it is socially so bizarre:

“Death and its companion, grief, have a profound presence in long term care facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they’d helped for months. But the tides of emotion that ripple through these institutions are rarely acknowledged openly.”

The Washington Post

Naturally, we view death as something that will upset our residents. When one of their neighbors pass, we’re adamant about keeping doors closed and wheeling the body discretely out the employee entrance. As devastating as it can be for us as staff, we hold it together for our seniors, offering support and encouraging strength. We justify their deaths and rationalize them as being timely and fair. I repeat, we justify their deaths and rationalize them as being timely and fair. Honestly, how insane does that sound?

Had even one student passed away at school, I can almost guarantee that classes would be canceled, vigils held, and grief counselors on sight immediately. We would openly mourn the loss together; we’d communicate how it made us feel. Grief for deceased elderly individuals is different – it’s referred to as being “disenfranchised” by society. Disenfranchised grief is experienced when people incur a loss that is not being/cannot be openly acknowledged, publicly mourned, or socially supported. In an effort to not upset or frighten residents, death in elder care facilities is structured to have minimum impact.

As I’m learning and growing in my role, I’m finding that there’s so much wrong with this approach. When we don’t acknowledge our feelings, especially sad ones, they can lead to a myriad of both physical and psychological symptoms. We (residents and staff) can become depressed, isolated, and exhausted. Health consequences aside, downplaying death is flat-out unnatural (and therefore uncomfortable) for us as human beings.

On Tuesday, I drove a van full of my loves to a fellow resident’s wake for the very first time. It wasn’t exactly a typical outing and it’s not something we’ll add to our daily activity calendar, but it was so, so worth the trip – our presence was cathartic, respectful, and normal. For once, we didn’t downplay our friend’s passing or the feelings it provoked. Going forward, there needs to be a shift in our approach: hosting candlelit vigils might be overkill, but we’re definitely done with rationalizing.