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

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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.

Choices

“Where you are a success or failure in life has little to do with your circumstances; it has much more to do with your choices.”

– Nico Qubein

I recently came across the above quote in a book by one of my favorite authors, John C. Maxwell. The chapter is on growth and change, and though the reference is pretty straightforward, it resonated with me on a deeper level. As I continue to learn and grow myself, I’m astounded by how much power is held in the choices we make. I’m even more surprised by the extent to which we carry their consequences with us over time.

At the risk of sounding like a broken record, it’s worth reiterating that my loves teach me an insane amount every single day. Some lessons are intentional and others inferred. Some exciting, others sad. When it comes to our choices, I’m realizing that it’s not only the obvious ones that stay with us; things like a healthy diet and regular exercise are important and can certainly shape our future, but the others – the emotional, social, psychological decisions – are just as significant.

Nico’s remark is incredibly wise. I recently had to sit down with one of my neediest residents. Despite tireless efforts to make her happy, she is constantly cranky and drafts lists of complaints. In my eight months at our community, I’ve seen her smile once (and it was at Rosie). It’s easy to assume when interacting with people like this particular nonna that they’re just miserable; they’re unhappy and there’s nothing that can be done about it. I’m realizing that though this assertion is partially true and that I can’t control her feelings, she has the ability to change them. I explained to her that while her living arrangements are less than ideal (no one wants to move to assisted living – I don’t take it personal), she has the choice when she wakes up every morning to make the best out of her day and her current situation or to wallow in self pity.

It’s not always easy on the other side of the curtain, either. We had a mandatory team meeting a month or so ago in the midst of what is best described as a corporate systems nightmare. Much of the stress and responsibility was falling on us as leaders, but the outcomes were beyond our control. It was killing our morale and draining our spirits. At our SOS lunch, we made an important, game changing pact: we’re in this for the long haul (and for our residents), and since we refuse to throw in the towel, we’ve got to adjust our mindsets. We can’t control the chaos, but how it affects us is in our own hands. What a shift there has been since.

Choices, when made consistently, become habits. Positive, healthy habits breed success. According to her son, the nonna referenced above has been unhappy her entire life, and that’s been her decision. It’s difficult to break bad habits at 90, but I’m thankfully finding it easier than expected at 30. Start right now. If your circumstances are unwavering, make the conscious decision to choose positivity. Oh, and if you insist on making lists, please write down what you’re thankful for.

So Embarrassing

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I’m not the type of girl who’s easily embarrassed. Earlier this month, while exploring Ireland with my best friend, there was a makeup incident that resulted in a stained shirt and impromptu shopping trip. I offered to trade; her white crop top was super cute and, in my opinion, the bronzer was barely noticeable. She was mortified. Weeks later, we’re still laughing about our Logan’s detour and her refusal to be out in public with that shirt, even if I was the one wearing it and not her. As silly as it sounds, it got me thinking.

The lessons my loves teach me are uncountable. Some are intentional and others by example. Dementia is known to lower inhibitions, leaving those with the disease more carefree. Dr. David Hilfiker, who is living with mild cognitive impairment, confirms:

“With this disease, much of my fear of humiliating myself has shriveled. When I do something outrageous, I apologize. Most people understand that I’m doing the best I can and that these kinds of things are just going to happen in Alzheimer’s. I’m still embarrassed, I suppose, but I no longer feel humiliated; this illness has given me the great gift of acceptance.”

Similarly, Cary Henderson writes:

“Somehow I learned to cope with it. First of all, you know you’re going to screw up a good many times, so just don’t let it bother you. There’ll be another time to screw up, and there might be a few times when things go right.”

Unfortunately, this attitude doesn’t always translate to caregivers. A diagnosis alone can be enough to spark embarrassment. In the 2012 World Alzheimer’s Report, researchers noted that one in four families hid their diagnosis from others, much unlike those with loved ones fighting cancer. Symptoms, I’ve found, are even more shameful; it’s incredible how many articles there are with tips on how to avoid embarrassing situations (i.e., “entertain friends at home”) and diffuse them. One caregiver suggested passing out cards that read, “My loved one has Alzheimer’s – Please excuse their behavior.”

Humiliation is exhausting. Yesterday afternoon, I had a long talk with a nonno whose wife has dementia. Despite both living in my community, he insists on helping, and it is evident he’s burning out. I was both saddened and confused to hear him say that he can’t bear to see her pick out mismatched outfits or order food she would have otherwise scoffed at. Why? Perhaps her decisions now are not those she would have made when she was well, but why do they embarrass him? His wife is happy.. She is safe, well cared for, and content. Her choices may not align with his, but they’re her own and she should make them. As Dr. Taylor (also living with the disease) confirms, it’s even good for her:

“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.

As caregivers, it’s essential to accept that most elements of this disease beyond our control. Stepping into our loved one’s world means not only going with the flow, but also embracing change and ditching shame. Embarrassment is useless at any age and in any country (including Ireland).

Our 1.5K

Earlier this month, I had the pleasure of joining my fellow Mount alumnae in a fundraiser for a classmate we lost. It was my first 5K, but to say I “ran” it would be a gross exaggeration: the ’05 ladies and I participated. We strolled through the streets of Essex Fells like we had all the time in the world; after starting late, we did one of three laps and celebrated like we’d actually accomplished something other than a makeshift reunion.

Shortly after my 1.5K, I attended a much-anticipated seminar with the founder of Dementia Village as its keynote speaker. As expected, Eloy van Hal completely blew me away. When describing the community’s unique approach to care, he stressed the importance of individuality and learning as much as possible about each resident. There is, of course, no one-size-fits-all when it comes to this disease or its management.

Eloy affectionately picked on a woman in the audience who, based on appearance alone, was extremely different from him. He made assumptions about her taste in music and pastimes, both of which she confirmed to be accurate. He then described his own preferences. Being a traditional Dutch man, they were obviously nothing like hers. What would happen, then, if the two of them were to be placed in the same nursing home? If he had to listen to pop music on repeat, or do chair yoga between meals? Most likely, he noted, he’d end up a bit restless. Agitated, even.

Eloy’s analogies really stuck with me. His focus was on person-centered care, an approach that has received worldwide recognition and called for a redesign of our own nation’s healthcare system. According to a 2001 report by the Institute of Medicine, we in the US are fragmented and impersonal; we harp on disease and impairment rather than individuality and aptitude.

Person-centered care originates from the works of Carl Rogers and later Tom Kitwood. It emphasizes communication and relationships as opposed to only health and diagnoses. It explains that the environment has just as much of an effect on the brain as the brain has on a person’s abilities. It navigates from the outdated medical model of dementia care and stresses the social piece, instead. Most importantly, it enables encourages people to get involved in how the services they receive are both organized and delivered.

I remember learning about person-centered therapy in grad school. It was one of my favorite approaches, with core conditions that I find so powerful:

  1. Unconditional Positive Regard, or deep, genuine caring for the client as a person no matter what, and
  2. Accurate Empathic Understanding, or sensing a client’s feelings as if they were your own

PCC seems simple enough to implement, but we’ve got quite a ways to go. In the 10+ years following the IOM-necessitated shift, little progress has been made in the United States as compared to other countries. Our move-in packets feature surveys and our activity calendars improved, but we’re coasting. We boast diversity in facilities yet strive for conformity and compliance. We shoot for “home like” and comfy yet solicit input from outsiders (whose homes do we think we’re mimicking anyway?! Not my grandparents’, that’s for sure). We may be on the right track, but we’re still strolling our first lap.

The “How” Part 3: Itineraries

After flights, I am most often asked about my itineraries, especially when trips are off the beaten path or feature unique excursions: Do I use a travel agent? What about Groupon or Expedia – do I book packages? The short answer is no, but the explanation is a bit complicated. It all starts with a flight and a map (Google Maps, in this case):

  1. Honestly, where I go is based solely on price. Some of my favorite places in the world are countries I never imagined I’d travel to. Norway, for instance, was not on my radar, but a flight deal popped up a few years ago and I grabbed it. I book the airline tickets first, then worry about the rest afterwards. If for whatever reason my preliminary research has me doubting my decision, I can always cancel; there’s no penalty if you do so within 24 hours of booking.
  2. Once my tickets are secured, the real digging begins. I find it easiest to have two tabs open simultaneously: one with a map of the country I’m traveling to and the other on TripAdvisor. Note that I specify country and not city because although I’ll only be there for a short time, it is extremely rare that I’ll stay within the city I’ve flown into (unless of course it’s Rome💙). On TripAdvisor, I’m looking for those must-see sites. On Google Maps, I’m pinning each one to see what is doable and how I’ll design my route.
  3. Narrowing down can be tough, but that’s where TripAdvisor comes in handy again. This time, however, my focus is on forums. What can I absolutely not miss in Ireland? I don’t need to kiss Blarney Stone with a thousand other tourists but I do need to sleep in a castle. What are some cool things to do in Scotland? I’m not trying to listen to bagpipes but I would be down with rock climbing along the Atlantic. Open forums are incredible resources; they allow us to ask real travelers questions and get honest, unbiased answers. They also provide tips and insights you may not otherwise come across. Websites like Lonely Planet have forums too, but I’ve found TA’s to be the best, especially when it comes to excursions.
  4. Once I figure out where I’m going, I look into the best way to get there. Nine times out of 10 I’ll end up renting a car through Expedia, but I don’t always return it to the same airport; if I’m traveling far enough away from where I begin, I’ll research quicker means of transportation to my return flight. In Norway, for example, we drove East to West across the entire country, dropped our car off in Bergen (which was our last stop), then took a short flight back to Oslo to catch our plane ride home. & yes, this was all in a weekend!
  5. Finally, I choose accommodations. I’m a huge fan of Booking.com and AirBnB. Booking offers incredible prices and options way beyond a typical hotel. AirBnB allows you to live like a local in someone else’s home. I save this part for last because it’s honestly the least important. Don’t get me wrong – we stay in awesome places, but their location is determined according to what we’re doing along the way, not the other way around. After all, as Ralph Waldo Emerson is famously said to have proclaimed, “Life is a journey, not a destination.”

Show Me the Money

It’s no secret that senior citizens can be preoccupied with money. They worry not only about what they have, but where it’s kept, who can access it, and how it’ll be distributed once they’ve passed. Those fears can heighten tenfold with dementia.

I never really got it; money is of course important, but I couldn’t relate to the fixation (…or so I thought). Recently, while volunteering in the Philippines, I caught a fraudulent charge from Sprint on my credit card. When I saw the $816, I lost it. I was on a paid-off trip with a $30k credit limit, money in the bank, and Chase promising me I wasn’t responsible for the charge, but I was beside myself. Long story short, I trolled Sprint’s Facebook page like a crazy ex girlfriend and they paid me back in full. I eventually got over it, but to say it was an eye opener would be an understatement.

My loves are billed monthly to live in our community and the rates are basically all-inclusive. They don’t need as much as a dollar on them, yet the money struggle is real. They’re constantly panicked about it in some capacity, whether they’re convinced it’s been stolen, determined to change their Will, or simply needing to know what’s left. I learned very quickly that assuring them they don’t need cash is useless, just as Chase’s words to me fell on deaf ears in January. Actually, I learned that any degree of rationalizing is impractical. Here’s what I do instead:

  • If a nonna is convinced money has been stolen, I “review the tapes.” We have cameras everywhere and I’m calling a detective. Whoever took it will be terminated and maybe even jailed, but not before that money is returned. It will never happen again. Did she need me to loan her some in the meantime? What is she up to today; did she have shopping plans? I’ve made the mistake of swearing that the cash didn’t exist in the first place, that it had not been taken. Not only was I not helpful – I became the culprit.
  • If a nonno is convinced and angry that his kids are spending his hard-earned money, I’m “going to call and give them a piece of my mind.” The audacity! It’s not theirs to spend! How many kids does he have again? Is everybody local?
  • If a nonna wants it just in case and feels better knowing that it’s there, I grab it from the safe. I “keep everyone’s money locked up in my office.” I even hold IDs! For those who need more reassurance than my words can offer, I have backup: Amazon sells double-sided play money that has been an absolute lifesaver, as has my iPhone camera for fake ID photos. What a pretty picture, by the way! I look so silly in mine.

I’ve heard countless opinions on this matter. Some say not to reassure them, not to lie. Everyone is different and no advice is one-size-fits all. The recurring theme is that I validate their feelings, and I follow up with redirection. Kudos to my CC company for doing just that as they talked me off the ledge. As for Sprint: thanks for the lesson, but I still hate your guts.