Let Me Live My Life

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

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

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

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?

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

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.

Me Too

prep

Not only is today the Friday of Labor Day Weekend, it’s the last day of an insanely challenging month. I had hoped on sneaking out of work early and possibly jumping on Parkway South, but my afternoon (and, subsequently, most of my evening) was spent otherwise: for about an hour before I clocked out, I spoke at length to one of my favorite residents regarding our hemorrhoids. Yes, our hemorrhoids. Hear me out…

This particular nonna is going through a difficult transition as she moves [reluctantly] from our assisted living into long term care. She’s the new kid on the block and just as she’s getting to know the staff, they’ve still got to get to know her. She tearfully explained that she’s been in excruciating pain and that her unfamiliar caregivers just don’t get it; there’s no way they understand how much it hurts. She’s probably right – they likely have no clue, and truthfully, neither do I. I do know, however, how powerful and important empathy can be.

The concept of empathy is generally implied to mean that an environment is created in which a person feels understood and accepted, due in part to the demonstration of kindness and warmth. It involves support, sharing, and acceptance, in turn helping others to feel understood and not alone. It fosters universality, or the idea that one’s problems are not unacceptable or entirely unique to them. Empathy squashes labels and depresses stigmas.

Stigmatization of things like dementia (and obvi hemorrhoids) can foster judgment. Even worse, it can impact attitude and, as a result, care. My now great friend and I still laugh about our early days together at my first assisted living job. We had a particularly worrisome nonna who would constantly fret over things like her bowel movements and the corns on her feet. To comfort her, I’d share my own experiences and assure her we were in this together and that we’d both feel better soon. Barely knowing one another at that point, Kaitlyn turned to me and said, “Do you even know what corns are? Do you actually have them?!” I admittedly did not, but pretending I did led to instant relief for our frequent visitor.

Interpersonal relationships are important because our own self-concept is defined by others and what info we get about ourselves from those connections. Simply put, the way we view ourselves is based in part on how we believe other people perceive us. Having a sore on your rectum is not only painful, it’s embarrassing! My nonna wasn’t seeking physical assistance from me tonight, but she did need some emotional validation and support. She was eager to know she was not alone and that her pain was understood.

Put yourself in your loved one’s shoes and treat them accordingly. Disregard the stigmas and lose the labels. Tell a *therapeutic fib* or two if fitting, even if you feel embarrassed. Dementia, like my AL, is a judgment free zone; all conditions (both real and imagined) accepted.