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.

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.

Last week, I had a very special visitor at work: my baby brother, P. Having stopped by for help with his best man speech, he got a taste of how busy my day can be; in the half hour spent in my office, we were interrupted by two department heads, one family member, and a distraught resident from our memory support unit. Accompanied by an exceptional staff member, E was beside himself – his mom had passed away and he didn’t have a ride to her funeral. On top of that, he had nothing good to wear.

Not surprising to my brother, I shot up from my desk. Shannon and I consoled our friend and assured him we would gladly drive him to the funeral – we’d obviously have been attending regardless. I fixed his collar and we tweaked his outfit, confirming he looked just fine and there was no need to worry. She pulled up Mom’s “obituary” and E found comfort in hearing that arrangements had been made and he wouldn’t miss a thing. Though still sad, he calmly returned to his apartment and thanked us profusely.

While unfazed by our reaction, P was confused about what he’d heard. “Was that real?” he asked. Could a man in his eighties have just lost his mom? “To him it was!” we replied. Obviously, E’s mom didn’t really just pass away. In fact, it’s been so long since her death that no such online obituary exists. Thankfully, Google helped us find the names of E’s relatives, whose mention helped to calm his nerves.

I write frequently about the importance of validating feelings. Naomi Feil, who basically grew up in an elder care facility, developed validation therapy after witnessing firsthand how ineffective (and even detrimental) other approaches to dementia care could be. Reality orientation, for example, was widely used for years to essentially bring demented people back to reality – to present orienting information like the current time and place in order to eliminate confusion. It sounds pretty promising until you really consider its consequences: if E is truly convinced he’s in his fifties and his mother just passed, me telling him he’s an 83 year old resident at an assisted living whose mom died thirty years ago would not only make no sense, it’d make me a crazy liar.

Validation therapy, on the other hand, is based on the general principle of validation, or the acceptance of the reality and personal truth of another’s experience (even if it’s not accurate). Its techniques aim to help individuals with dementia be as happy as possible; when their struggle is respected and validated by a trusted person, withdrawal is halted and dignity restored. Though validation can’t repair damaged brain tissue, it can help lessen anxiety. It can foster trust and even love, & that’s real enough for us.

I like to think of myself as a really laid back person; I’m a simple girl who rolls with the punches and is easy to please. However, like everyone else, I have my quirks. Over the past 31 years, I’ve naturally developed habits and preferences. Nothing unreasonable – I like to sleep in on weekends, I keep my thermostat at ~76 degrees, I hate eating breakfast, and underwear makes me claustrophobic. Obviously I’m flexible, but if I had to go an extended period of time out of my quirk comfort zone, I’d probably start to crack.

This past week, I had three of my evening shift employees come to me with concerns about a resident. Her usual caregiver had been struggling at bedtime, as this nonna (who I’ll call “S”) refused to join her and head up to her apartment from our lobby. Her teammates tried to help, thinking maybe it was that she simply didn’t care for aide but would be more willing with someone else. No such luck, though, and they were both stumped and upset: “How can we leave at 11 without putting her to bed?” While I appreciate their concern and eagerness, I, too, was confused – who’s to say she has to be asleep before they leave? & why? What’s the harm in letting her hang on the couch until she’s ready to head up? There are caregivers in the community around the clock – what’s the rush?

In most senior care settings, sleep and wake times are typically driven by staff. Sure, we ask about preferences, but caregivers have schedules to keep and tasks to complete. Residents are expected to conform to the needs of the community, which means not only that their needs may not be adequately met (or in a timely manner), but also that the setting itself may be a source of distress. As a result, like in the case of S, care is rejected and “behaviors” displayed.

S is headstrong, to say the least. If she’s not happy, she’ll let you f’ing know, and she won’t forget you made her mad. Dementia has a sneaky way of not causing troublesome behaviors, but preventing people from expressing the source of their anguish. Sometimes, it’s as simple as not being tired or a disruption in routine. If one’s reaction seems irrational, put yourself in their shoes: if someone woke me up too early, dressed me in granny panties under my outfit, and forced me to eat breakfast in a chilly dining room, I’d be cranky and uncomfortable. I’d suck it up for a while, I’m sure, but not forever. If, on top of that, no one was honoring my preferences or understanding my requests for change, I would, without shame, pull those undies off and push my plate away.

Situations like the one experienced by my night-owl-nonna arise all the time, and we as caregivers have a few options as to how we can respond: we can fight until someone surrenders, chalk it up to symptoms of the disease and (gasp!) medicate/sedate, or change our own approach. We can step into their world and adjust accordingly. Our front door locks at 9PM and there are caregivers staffed through the night; there’s no reason that S can’t hang until she’s sleepy (or that I can’t sleep in until I’m hungry).

In the assisted living world, we often say we’re in the “wellness business” as opposed to the “illness” one. Our approach is more person-centered and takes into account not only physical needs, but emotional and social ones, as well (to name a few). The focus has shifted from diagnoses and limitations to capabilities and what’s preserved. After all, no one wants to be defined by their health needs, and they certainly don’t want to simply exist:

“That would be the aim of good senior care: the aim to live, live, live until you die – that you’re dancing when you die. That would be the dream of most people. They don’t want to sit around and die slowly.”

– Mary Tabacchi

The above doesn’t have to be a pipe dream; it’s time to really practice what we preach. Too often, we concentrate on what our nonnas can’t do anymore as opposed to what they can. To worry is natural, especially when it comes to our more vulnerable loved ones. However, if we hone in on that fear and highlight limitations, we only disable them more. Keeping your nonno active in hobbies he enjoys is not only necessary, but with a little creativity, it’s also totally doable.

Maybe your nonna doesn’t remember her recipes, but she can certainly be your sous-chef. The washing machine may be complicated to work, but odds are she’d be happy to help fold clothes. As is the case with one of my favorite residents, the mall is overwhelming, but catalog shopping is both stimulating and fun (for both of us, obv). Rosie’s too big for some to walk, but many help to “watch” her for me and practice all her tricks. Regardless of how the activity’s tailored, what matters most is that it happens:

“I appreciate and sometimes immerse myself in the process rather than only or mostly on the outcome. I like doing things. I like and appreciate the doing. Doing is how I know I am alive, and how I appreciate being alive.”

–Dr. Richard Taylor

Life is for the living. Avoid leaving things at “can’t” and be creative with your plan Bs. Offer encouragement, not dissuasion, and don’t ever let the dancing stop.

2018 has been the greatest rollercoaster ride of my life to date. It has also been the year of, without a doubt, the most powerful lessons. I feel so fortunate to have been able to learn so much not only through my own experiences, but from the wisdom of my residents.

Last month when interviewing our Veterans, I had the pleasure of hearing about how one of my favorite nonno’s met his beloved wife. I ended up with five minutes of footage related to the war and 45 on Anna. They wrote to one another for over two years before they met in person, during which time she was engaged to someone else. Her fiancé owned a gas station about an hour north of where she’d grown up, and she was hesitant to marry him and be so far from her parents. Ed, on the other hand, lived 1,000 miles away. Without hesitation, after meeting at Yankee Stadium and getting engaged shortly thereafter, she joined him in St. Louis.

Ed and Anna’s story moved me beyond words (read: it moved me to full blown tears, which you can probably hear in my voice at times!). I felt it was too beautiful not to share, especially considering it was one of my favorite experiences this year. With every curve of the winding road that was 2018, my loves have continued to teach me to fight for what feels right; to be courageous and to take big risks; to be honest about how I feel; and, perhaps most importantly, to never settle in any aspect of your life. In Ed’s case, it was mail order bride or bust.

Birthdays in your thirties are weird. I don’t know if it’s just me, but these first two so far have sparked a lot of self-reflection. These past few weeks, I’ve found myself replaying memories of this year in my mind as I do The Office reruns on my ancient DVD player (full disclosure: I could watch that show every day and not get tired of it). Unfortunately, I’ve thought a lot about the tough times, too – I can’t exactly skip over those like I can the crappy episodes. This time in 2017, I started my first Administrator job at a company that was pennies away from bankruptcy. To say that 30 was stressful would be an understatement. Not surprisingly, however, my residents have really changed my perspective on the entire experience.

I had the pleasure of filming some of my Veterans for a luncheon we hosted a few weeks ago. The below video highlights some of what was said, though it doesn’t do our “interviews” justice. One thing I mention they’ve taught us is positivity. My year may have been difficult, but it wasn’t a war. I wasn’t drafted to go to battle, nor was I pulled from my family or my home. Despite the incredible challenges they faced, every single one of them highlighted their silver lining; I hadn’t even prompted them for it, either.

What a way to bring me back to Earth. My loves continue to inspire and teach me every single day, and I’m constantly in awe of their strength and perseverance. We talked about the tough times during our sit-downs, but we didn’t dwell on them. We noted the positive and moved on. I can’t promise I won’t skip over some reruns, but I’ll definitely follow their example as I tackle 31.