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

FBI

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:

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.