endalz

Operation Green Sheets

ccandido1 Passion , , , ,

greensheets

One of my favorite nonnos of all time passed last week. He was hands down the most spirited, loyal, fun-loving resident I’ve had the pleasure of serving, and he adored his wife. No matter the circumstance, he’d support her blindly. They’d dance to any song and, if separated, he was beside himself. During a brief stint in the hospital (for her), he sat in the lobby from morning until night awaiting her return. Literally, he didn’t move (except to yell into my office every hour for an update).

My “boyfriend” was also extremely headstrong, and he and his beautiful wife both lived with dementia. When she had an idea in her head, she’d rile him up and they would fixate on it. Dementia is so f’ing weird – they’d forget that they ate breakfast but despite my prayers and redirection, they’d remember every detail of these delusions. I’m cracking up at the thought and at the memory of them standing in my office, him raising his voice (& sometimes his middle finger) and her egging him on.

One of my favorite stories of Mr. & Mrs. M came to be fondly referred to as “Operation Green Sheets”. One morning, they came to alert me of a probable theft: their daughter-in-law had bought them a set of green sheets, which were now missing. Thankfully, I had a great relationship with their two sons, who were insanely understanding and supportive. I know it’s horrible to say (but I always say it anyway) – I’ve seen a lot of amazing, involved daughters, but those really good, patient, helpful sons.. they’re a dime a dozen (sorry, boys). These two are exceptional. A quick text confirmed there was not, in fact, a green sheets delivery. We laughed it off, reassured them that they were in the laundry, and hoped they’d be forgotten by morning.

To our disappointment, these were the most memorable made-up sheets in the history of fake bedding. A few days passed with constant calls, visits, and middle fingers. I was out of excuses and there was no appeasing them. I sent the boys two shades of green and by the grace of God, they picked the right color – they arrived via Amazon Prime the next morning and when delivered, my loves shouted in unison, “That’s them!”. Crisis averted, and this time without the help of the police (I’ll save that story for another post 😉).

I was only lucky enough to spend a brief time with Mr. M. However, I don’t need to have known him forever to be certain the world will be a duller place without him. I will be always grateful for his lessons, laughs, love, and even middle fingers. May he rest in the sweetest peace. ❤

HTWF&IP

ccandido1 Passion , , , , ,

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.

I Care: A Handbook for Care Partners of People with Dementia

ccandido1 Print , , , , , , , ,

41-RvX1ceJL._UY250_

No book review in over a year ≠ no books read in over a year. However, none have truly moved me enough to write about them… until I Care: A Handbook for Care Partners of People with Dementia. Though well over 100 pages, I Care is a quick, easy, engaging read that I honestly couldn’t put down. Its co-authors are well known in the field and offer not only insight and guidance, but also real-life stories of caregivers navigating the world of dementia.

One of my favorite things about I Care is the way the authors explain dementia and exactly how it can affect various parts of the brain. They’ve written in a manner that is both informative and easily understood. An awesome analogy, for example:

“[the brain] is a communication network, with neurons being the computers and phones, and the axons and dendrites being the wires and radio signals that allow them to share information.”

Why didn’t our bio professors explain it this way?! Find I Care on Amazon here.

Kiss Me Like You Mean It

ccandido1 Passion , , , , , , , , , ,

widget4

Full disclosure: I am not a PDA kind of girl. The above title is actually a direct (and frequently used) quote from a college boyfriend who was contrarily very into public displays of affection. He was super huggy and kissy regardless of where we were or who was around, and the fact that I wasn’t drove him nuts; a quick peck to appease him was clearly insufficient, hence the “kiss me like you mean it.” Don’t get me wrong, behind closed doors is a completely different story – I am beyond affectionate, playful, and even huggy-kissy. There are only two instances in which you’ll witness that side of me in public, however: with dogs (surprise, surprise 😉 ) and with my loves.

I am a huge advocate for touch. Numerous studies have proven that it’s not only essential for our development, it is also necessary for us to grow, learn, and literally survive and thrive. From infancy, touch is used to both communicate and to heal; a loving caress releases oxytocin and instantaneously boosts one’s mood, strengthens the immune system, and reduces stress. It’s not one-sided, either: there is evidence that the person doing the touching gets just as much benefit as he or she being touched. Incorporating even the simplest pats with other forms of communication increases connectedness, improves attitudes, and calms nerves. We are biologically wired to the need to connect with others on a basic physical level, and it’s something we don’t grow out of.

I’m not alone in being anti-PDA; we are a seriously touch-phobic society. The resultant touch deprivation in the elderly is alarming, especially for those who are frail or demented. Such deficiency leads to feelings of isolation, anxiety, poor trust in caregivers, a greater decrease in sensory awareness, and insecurity – the last thing they f’ing need. As if dementia didn’t leave one feeling frightened and alone enough, our lack of intimacy just kicks a nonna while she’s down, as to deny it is to deprive her of one of life’s greatest joys and deepest comforts.

It’s not just our nonnos we’re depriving, either: a study from the 1960s looked at café conversations all over the world. In France, friends touched each other 110 times per hour. Puerto Ricans beat them by 70 – a whopping 180 touches were recorded in the span of 60 minutes. In the US? Twice. In “bursts of enthusiasm,” we touched each other twice. 😐

Touch is the universal language of compassion. When words are no longer understood, there is no better substitute than a gentle hug or holding hands. In old age especially, the need for physical affection is more powerful than ever, for it is one of the only sensuous experience that remains. It is one of the few persisting methods of communicating with a nonna of limited cognitive function, and its effects are both physically and emotionally favorable. In a study that examined the impact of touch on appetite in picky elderly eaters, all participants had a significant increase in caloric intake when given a gentle touch and spoken to during mealtime. Additionally, a study on dementia patients proved that touch is calming; all residents who received hand massages presented significantly less agitated than those who did not.

Sources of proof are endless; there is no question that affection is insanely beneficial to seniors (and to the rest of us!). How we choose to implement it in our daily practice is subjective. In my own experiences, I have found that while being huggy-kissy with boys makes my eyes roll, doing so with my loves is invaluable. I greet nearly every resident with a kiss.. I don’t care if they’ve got half their lunch on their lap or if they’ve had a cold for days, I’m wrapping my arms around them and kissing their cheeks (don’t worry Dad, I wash my hands). If a nonno’s in a wheelchair, I crouch beside him and rest my hand on his knee. I’ll walk arm-in-arm with nonnas and cozy up on the edge of their recliner when we rest. I’ll sit right on that hospital bed, my fingers locked with theirs, regardless of cognizance or how tightly they grasp back. If there are tears (God, I hate when there are tears), I softly wipe them dry. I kiss them like I mean it, and honestly, the impact is immeasurable.

Dementia Village

ccandido1 Passion , , , , , , , , , , , ,

To scale the cliffs of the Amalfi Coast, to barter with street vendors at Christmas markets, to see The Pope say mass… There are a ton of reasons I book the trips I take (most involving food or scenery), but the latest was more personal. After over a year of watching prices, flights to Amsterdam dropped and my dream was within reach: in six short days, I was going to Dementia Village. “Hogeweyk” as it’s actually called (pronounced hoke-ah-waek) is a Truman Show-style village 20 minutes southeast of Amsterdam. Though seemingly ordinary, it is a constructed reality designed to cater to those with dementia. Everything about the community, from its layout and its shops to its antique décor and styles, is geared toward creating an environment that is as close to home as possible for all inhabitants. It is the currently the only one of its kind in the entire world, though others are excitedly following suit.

The purpose of this post is to paint as clear a picture as I can of the innovative, remarkable community that’s had my heart since its CNN debut. I will therefore try to keep it as simple and orderly as possible, refraining from writing too much about my feelings. 😉 As a lot of the information I’ve researched has been in other languages, some names or translations may sound funny. Bear with me as I try!

As I mentioned, Hogeweyk appears to be a disarmingly “normal” town. It’s tinier than we’re used to in the States and reminds me of a garden apartment complex or college campus. Its layout is intriguing; while secure, there are no walls or gates surrounding its perimeter. There are no locks, no guards, and no fence. Home to 152 residents, the tiny town boasts a restaurant, café, pub, supermarket, hair salon, music store, gym, lending agency for borrowing CDs and the like, various offices, and 23 “houses.” Each home is designed to match one of 7 different lifestyles:

  1. Urban/City Lifestyle: for those who were at the center of city life
  2. Homely Lifestyle: for those who value caring for their family and household
  3. Cultural Lifestyle: for those who love art and culture
  4. Indonesian Lifestyle: for those of Indonesian decent and whose daily life reflects their heritage
  5. Gooi/Well-to-Do Lifestyle: for those who find it essential to have proper manners, etiquette, and respected external appearances; for the “aristocratic Dutch” of a wealthier social class
  6. Traditional Lifestyle: for those whose pride and identity come from carrying out a traditional profession or managing a small business
  7. Christian Lifestyle: for those who live their lives according to their Christian faith

In general, each house is huge, with wide hallways, vast common areas, and personalized bedrooms. Floor-to-ceiling windows scan the length of each living room, and personal photos and art adorn the walls. Hardwood floors are found throughout, atop them beautiful furniture and antique accents. With resident reality orientation in mind, they match that which was popular in prior decades; Hogeweyk wants its environment to be virtually identical to that of residents’ past lives, focusing not only on religion and culture but also on smaller things like setup, music, style, and customs. It’s like an average US nursing home, except it’s the complete opposite. :-O

Homes cater to each lifestyle, however, and therefore differ in details and décor. The Indonesian apartments, for example, are decorated with flourishes of their indigenous culture. There are pictures of their homeland and color schemes to match. The food served is a mixture of Indonesian and Dutch cuisine, as residents identify with both cultures. Outside, gardens are planted “Eastern style” so that they’re suitable for prayer and meditation; they’re even equipped with big Buddha statues! Gooi houses, on the contrary, are super fancy; residents dine on lace tablecloths using fine glass and porcelain. Meals are brought to the table by “servants” who remain on standby out of sight. There are ornate chandeliers and formal relationships; servants (aka caregivers in disguise) are to be submissive and respectful.

Each resident’s lifestyle is determined prior to move-in based on preference and the results of a “digital lifestyle guide” via Motivaction, a research company that strives to pair people together according to their values, beliefs, and practices. You can actually go to their website and take the survey yourself; I did and it was spot-on! With an extensive wait-list, newcomers move first into an Admissions House where they’re catered to on a more individual level. Once a spot opens up in a lifestyle home of their choice, they’re able to settle in.

While residents seem to respond best when they retreat to private homes with likeminded neighbors, segregation is not maintained in outdoor life. Just as in a regular town, the streets and squares are neat and tree-lined. There are benches everywhere, as well as bikes for rent (no charge!) and pretty, calming fountains. There are no locks on any doors; all are free to roam about if and when they please, no matter the time of day. The town sits on nearly 4 acres, about half of which is actually built upon (homes are ~3,000ft2 each, with 5-7 bedrooms per home). There are tons of gardens, patios, and common areas, each with fresh flowers and one more beautiful than the next. Doors and windows are left propped open. What’s the catch, then? How is this community secured? Take a look at the somewhat confusing ground level floorplan (maybe this looks simple to you, but I’m a realtor, not an architect :/ ):

hogfirstfloor

Though lots of open space and room to wander, apartments line the entire perimeter of the community. Aside from the single main entryway, there are no doors that lead outside of Hogeweyk. They all open up to areas within the village itself. As a result, locks are unnecessary.. wander guards are obsolete.. coded elevators are foolish. Not only are residents able to go out, they’re encouraged to. HALLELUJAH!

As was the case in Jim Carrey’s The Truman Show, however, residents are monitored 24/7 via video and audio surveillance. Around the clock care is provided by 240 “villagers” who are actually trained geriatric nurses and caregivers dressed in street clothes. Staff takes care of everything from cooking meals and planning activities to assisting with ADLs and administering meds. Even those working in various Hogeweyk businesses are trained in dementia care, down to the bartenders and theatre actors. No real money is exchanged, and if someone gets lost or becomes confused, there’s always a villager nearby to nonchalantly guide them home. If a nonna forgets she’s ordered coffee and begins to leave before it arrives, a neighbor affectionately joins her and encourages her to stick around. If a nonno steps out in the cold without his winter jacket, a friend will simply bring it out for him. Met with dignity and respect, neither scolded nor corrected, residents are happy, safe, and free. A favorite line I’ve read was spoken by Janette Spiering, one of the community’s directors, who said in reference to a resident who liked to garden: “The fact that he sometimes pulls out plants instead of weeds is not a problem. They can be replaced.” WOW.

Rather than summarize Hogeweyk’s list of daily activities, I wanted to share my unbiased experience of the community and what life appears to be like there. I arrived before 9AM; my flight landed at 7:30 and I immediately picked up my rental car and sped to Weesp (literally. I got a speeding ticket in the mail this afternoon 😐 ). Most residents were still at home, likely showering and getting ready for the day ahead. I spoke with Ellie at the entryway and gathered as much information from her as I could. She was a saint, and even drew me a map to help me find my way to Amsterdam when I left. ❤ She filled me in on some logistics and answered the questions I came prepared with:

  • Similar to some communities here, there are three levels of care
    • They’re referred to as assisting level, care level, and nursing level
  • Technically, there is a ratio of ~1½ caregivers to 1 resident on any given day (~240:152)
  • Overnight, there are 5 caregivers per level of care
    • Instead of “making rounds,” they take turns watching the alarms and walking about the community, all remaining in contact with each other and allowing the residents to soundly sleep
    • Homes are only worked in if there’s a clear reason for doing so (otherwise, they’re kept dark and quiet)
    • If residents are up, caregivers may keep them company, as many prefer to just watch TV before heading to bed
  • Most residents spend a substantial amount of time outside every single day
  • Hogeweyk is open to anyone who wants to visit
    • They want the neighborhood to be as normal as possible, and since the residents can’t leave, they want and encourage others to come in!
    • There is a constant influx of visitors, none of whom are restricted to stuffy rooms or indoor common areas but can rather stroll through town, visit shops, participate in activities, and share a meal with their loved ones
    • *Side Note* nursing home residents in the Netherlands go outside for an average of 96 seconds per day and 60% never receive visitors. Here in the US, 35% of dementia sufferers leave their homes just once a week, whether those homes are the ones they’ve lived in for years or an assisted living/memory care community. Even more heartbreaking, 10% go out only once a month. Obviously, this isn’t the case at Hogeweyk!
  • The cost to build Hogeweyk was over $25 million, $22 million of which was funded by the Dutch government (and the rest by fundraising)
  • It costs ~$7,000 per month to live in the community, though “care insurance” that Dutch citizens pay into for nearly all of their lives covers most, if not all, of that expense
  • There is a perpetual waiting list to get in
  • There are tons of different clubs and various activities, performances, festivals, and markets on a daily, weekly, or monthly basis
  • Hogeweyk a pet friendly community (!!!!)
  • Residents receive the care they need but the emphasis is on normal living, not their illness
    • This method isn’t necessarily suitable for those with a heavy task-focused approach to caregiving, so they’re very selective about who they hire
    • Management is required to do things differently, too; their vision must be recognized and implemented by all, with living, wellbeing, and care all interwoven in such a way that one cannot exist without the others
  • It is important for all staff to communicate with residents both verbally and nonverbally
    • Even if one is far into the disease process and cannot actively participate in or contribute to household activities, seeing, smelling, and listening to discussions about ordinary day-to-day things helps provide meaning
      • They can still be involved and their plate of food doesn’t just appear out of nowhere!
    • Everything is done on-site in each house and it’s communicated to the residents what’s going to be done, what they’re currently doing, and what tasks were just completed; they’re involved and informed verbally and with nonverbal cues
  • Residents’ views of their caregiving “neighbors” differ according to their lifestyle
    • Those from wealthier backgrounds think of them as servants, whereas people of working class origins believe they’re extended family members or friends

A million questions and thousands of hand gestures later (her English was così così), I had my long awaited tour. As I mentioned, nearly everyone was still in his or her apartment; I was able to galavant around town like a giddy tourist in awe of my surroundings. What struck me most was the normalcy of it all: there were shopping carts outside the supermarket, outdoor seats at the restaurant, and high-top tables at the pub. There were no unsightly med carts, no people dressed in scrubs, and no pull cords in the restrooms. It was memory care heaven. I won’t bore you with the details – the photos below speak for themselves. Just know that it was everything I’d dreamt of and then some.

After 3,655 miles of traveling, I figured it made no sense to tour and run. I wanted to immerse myself in Hogeweyk and take in as much as they’d allow me to. I sat outside of the café and introduced myself to some employees. Ok, fine.. I awkwardly inquired about where I could find coffee (dear God did I need it) and nonchalantly asked a hundred questions about their jobs. Welcoming is an understatement when describing Hogeweyk’s staff; from the house cleaners to the caregivers (& of course my girl Ellie at the entrance), they were beyond incredible. I chatted for a while with a younger man and thanked him profusely for his hospitality, insight, and espresso. I returned to my seat (in the sun, of course) and began taking notes.

Within a few moments, I was greeted by a cheerful resident who was “so happy to see me again.” I’m not worried about violating HIPAA laws (or whatever the Dutch equivalent may be) because I know I’m butchering these names, so I’ll call her what I heard her introduce herself as: Will. Will, like many residents, learned to speak English in school. We chatted as though we’d known each other for years, and I reciprocated my surprise and excitement to have bumped into her again. We talked about her family and how her father owns a hotel in Amsterdam. Will believes she’s in her 20s and still resides with her mom and dad. I asked ifs he’d like some coffee, and was happy to run inside and make her a cup. Upon my return, Will was gone; she’d likely been confused or forgotten I was coming back. The nice man I’d chatted with prior, however, had overheard our conversation and warmly accompanied Will to my table. He explained to her that I’d gone to get her coffee, and I melted at her response; she must’ve mentioned five times that she couldn’t believe her nice neighbor came to tell her that I (her friend) had gone to fix her a cup. Truthfully, I couldn’t believe it either. The Hogeweyk vision was obvious first in Ellie and reinforced continuously by everyone throughout the duration of my short (but valuable) stay.

Soon, there were three of us; another resident sat beside me, followed by a fourth, a fifth, and so on. Our table in the sun was packed and I was in my f’ing glory. Will was one of the few in our group who spoke English, but all were happy to converse despite our language barriers (and some obvious aphasia). Various members of the Hogeweyk staff walked by, but none passed without a friendly hello and brief exchange. Though evident enough in their overall demeanors, Will and her acquaintances assured me that they live in an incredible community with friendly, helpful neighbors. My heart was full and my head in the clouds.. how do we bring this place home?!

The remainder of my time was spent quietly observing life at Hogeweyk, and that’s exactly what I witnessed: living. In this tiny “fake” village, I saw true, unrestricted, happy, meaningful life. The innovation lies not only within the community’s design, but also (and primarily) in its approach. Hogeweyk is busting at its unlocked seams with compassion, dignity, freedom, and love. I can only hope to be part of such an incredible movement here in our own country one day.

IMG_9928_2 IMG_9809_2 IMG_9813_2 IMG_9817_2 IMG_9821_2 IMG_9823_2 IMG_9825_2 IMG_9827_2  IMG_9831_2 IMG_9833_2 IMG_9837_2 IMG_9839_2 IMG_9841_2 IMG_9847_2 IMG_9855_2 IMG_9867_2 IMG_9870_2 IMG_9872_2 IMG_9873_2 IMG_9874_2 IMG_9879_2 IMG_9881_2 IMG_9882_2 IMG_9883_2 IMG_9884_2 IMG_9886_2 IMG_9887_2 IMG_9890_2 IMG_9898_2 IMG_9908_2 IMG_9910_2 IMG_9914_2  IMG_9918_2 IMG_9922_2 IMG_9924_2 IMG_9929_2 IMG_9930_2

Partial View: An Alzheimer’s Journal

ccandido1 Print , , , , ,

51RVXRNBKFL

It’s been too long since I’ve written a book review post! After much anticipation, I finally received former history professor Cary Henderson’s Partial View: An Alzheimer’s Journal.

Typically, one cannot receive a definite diagnosis of Alzheimer’s until they’ve passed away and an autopsy is performed. Mr. Henderson, however, was a rare exception; he had had a biopsy for something unrelated and the results confirmed he had the disease. Though no longer able to write, he used a tape recorder to track and share his thoughts. His wife and daughter eventually transcribed his footage and wrote this book, which I was able to finish in a little over an hour.

Partial View contains mostly random, unrelated thoughts; it doesn’t follow a clear path, but is nonetheless informative and definitely provides a glimpse of what an individual with Alzheimer’s is thinking and feeling. It’s a quick, easy read, and though it won’t necessarily change your life, I think it’s worth the hour! Plus, you can find it on Amazon for as cheap as a dollar.

One of my favorite quotes (he keeps you laughing!):
“I did stop going to church. The biggest reason – well, there were two reasons, one of which is that I am not really enamored of a God who creates something like Alzheimer’s and the second is I’m afraid of tripping.”