Passion

Experiences with patients, who open my mind & fill my heart more than they’ll ever understand.

The Talk

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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 Are You Inviting (..them for)?

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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?

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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.

Was That Real?

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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.

Let Me Live My Life

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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).

Plan B

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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.

Mail Order Bride

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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.

31

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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.

Is It Physical or Mental?

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Contrary to what my social media may portray, working in assisted living is not all bus outings and puppy kisses. A decent amount of my time is spent not with my residents, but communicating with their loved ones, whether in person, over the phone, or via email. While I really enjoy that part of my role, too, it can sometimes be extremely challenging. I held a family meeting yesterday with one of my favorite nonna’s son and daughter-in-law. She’s currently rehabbing at our post acute care and will likely end up staying there long term. When conveying our nursing home recommendation to her family, my coworkers and I were met with sadness and confusion. “Is it physical?” her son asked. “Is that why she has to stay here? Or is it mental?” The short (but complicated) answer: it’s kind of both.

This particular nonna, who I’ll call M, is physically in pretty good shape. Granted, she’s in a wheelchair, but she can self-propel and get around on her own. She can bear her own weight and really just needs someone on stand-by when she does things like shower and get ready in the morning. Cognitively, she’s in the earlier stages of dementia and is pleasantly confused. She knows exactly who we are and has no problem telling us how she feels (read: she can be super cranky). Her reality orientation is a bit off and we have to remind her when it’s time for lunch, but she has more good days than bad ones. Doesn’t sound like M’s necessarily nursing home appropriate, right? Here’s where that confusion and the “kind of” come into play.

M is both prideful and forgetful. She not only wants to do things on her own, she forgets that she can’t. If she tries and fails, she’s not sure how to call for help; though she has an emergency pendant and pull cords throughout her apartment, they’re essentially useless as she won’t remember how to use them. Assisted living, in her case, is a recipe for disaster; despite the fact that she’s not too clinically or mentally compromised, she has very poor safety awareness and, as a result, falls constantly. It’s no secret that one bad spill can be incredibly dangerous for someone elderly and in her condition.

Dementia affects various parts of the brain differently. The frontal lobe, which is responsible for things like judgment, impulse control, and spontaneity, can be a game changer if impaired. There’s no reasoning with someone who lacks judgment, either. I wish with my entire heart that I could convince M it’s not safe to try to walk, to shower by herself, or to keep her door locked. I want her to stay with me for so many reasons, and I know her family does too. Safety is always top priority, however, no matter how or why it’s compromised (physically, mentally, or kind of both).

HTWF&IP

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Full disclosure: I have an embarrassingly impressively large collection of leadership books. When I was offered my current job at the end of last year, to say I was nervous would be an understatement. Since no “Executive Director for Dummies” book exists, I figured those on personal growth would be the next best thing. While some have been cheesy, most have actually proven to be helpful, with my favorite being How to Win Friends & Influence People by Dale Carnegie.

Despite being one of the most successful books in American history, I had not heard of Carnegie’s bestseller until recently. With millions of copies sold worldwide, numerous accolades, and over 7,000 Amazon reviews, I anticipated that I would learn a great deal in regards to professional relationships and communicating with employees. I did not, however, anticipate finding so much to be relevant to working with dementia patients.

HTWF&IP features 29 principles (outlined here), but the below hit closest to home. Note that they are in no particular order and that some have been combined:

  • “Smile – it’s a simple way to make a good first impression. Remember that a person’s name is to that person the sweetest and most important sound in any language.”

Unfortunately, your nonna may not realize at first glance that she knows you. Even if she does, she may not understand how or in what context. Smiling and greeting her with her name not only indicates that you’re familiar with one another, but also elicits comfort and relief.

  • “Don’t criticize, condemn, or complain. The only way to get the best of an argument is to avoid it.”

See previous post for specifics on arguing and how detrimental it can be. As Carnegie reiterates, it’s essential to distrust our first instinctive impression; our natural reaction in a disagreeable situation is to be defensive. If your nonno accuses you of misplacing his keys, you’ll understandably want to assure him you have not. Conversely, make it a point to listen and apologize; it will help disarm him. Show respect for his opinions and never say he’s wrong.

  • “Make the other person feel important – and do it sincerely. Throw down a challenge. That is what every successful person loves: the game. The chance for self-expression. The chance to prove his or her worth, to excel, to win. That is what makes footraces and hog-calling and pie-eating contests. The desire to excel. The desire for a feeling of importance.”

Regardless of age or cognition, we as human beings crave a sense of purpose. We need to feel as though we matter. Last month, one of my favorite residents was visibly agitated and I overheard staff having a difficult time redirecting him. Upon entering his room, I exclaimed that he was just the man I was looking for; I had to hang up flyers for an impromptu ice cream outing we’d take that afternoon. I solicited his help and together we completed a seemingly trivial task. He even agreed to join us at Dairy Queen following some shameless pleading on my end – I needed a man’s coaching and direction while driving our huge van!

  • “Let the other person save face. Even if we are right and the other person is definitely wrong, we only destroy ego by causing someone to lose face.”

One of my biggest pet peeves is hearing someone point out the fact that a nonno or nonna has wet themselves, regardless of whether or not others are present. I’m cringing at the thought. The legendary French aviation pioneer and author Antoinne de Saint-Exupery wrote: “I have no right to say or do anything that diminishes a man in his own eyes. What matters is not what I think of him, but what he thinks of himself. Hurting a man in his dignity is a crime.” No matter the situation, preserving dignity is essential. In my opinion, this is non-negotiable.

Truth be told, all 29 principles in How to Win Friends & Influence People are applicable, but why shouldn’t they be? After all, individuals living with dementia are just that: people.