alzheimer’s

Operation Green Sheets

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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. ❤

Face Value

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When caring for a loved one with dementia, you’re often faced with situations that don’t seem logical; they’re far from “normal” and can be downright confusing. In fact, most lack “common sense” altogether… at least at face value. Working in the field, one of the most important lessons I’ve learned is that nothing is as it seems. Today, for the millionth time, it was reiterated by one of my favorite nonnos.

In the senior living world, the word investigation is part of our everyday vocabulary. Unusual behaviors? Investigate the unmet need. Frequent falls? Investigate environment, meds, and other risk factors. As time consuming as they can be, investigations are also super practical, especially when faced with puzzling scenarios. There’s a level of formality we associate with them that isn’t always necessary or applicable. Sometimes an open mind, creative thought, and a little digging are all you need.

There have been some concerns about the hygiene of the nonno I mentioned. Other residents have been complaining that he stinks and he always looks unkempt. Though in the earlier stages of dementia, he is fiercely independent and doesn’t let us help him with anything; we can’t so much as lay out his outfits in the morning without a fight. Oddly enough, when by the grace of God he lets us do routine skin checks, everything looks good. His hair and beard aren’t oily, either, but the odor he emits is pungent. He swears he showers regularly, but how could that be?!

Cue investigation mode. I thankfully have a good rapport with my sarcastic, headstrong love, so I felt comfortable being honest with our concerns (in an extremely kind, empathetic way, obviously). It was immediately apparent that his clothes were filthy. He admitted to keeping them on for a few days and thinking nothing of it, which is not uncommon with dementia. When I affectionately offered to pick out a fresh outfit for dinner, though, I discovered the most pressing issue: he has nothing to wear. Aside from a pair of cargo shorts and a ripped, medium-sized t-shirt in his closet (he’s an XXL), there was next to nothing to choose from. In his mind, however, that didn’t matter – he had clothes on his back and, thankfully for him, a poor sense of smell & self-awareness.

A pep talk, some hand-me-downs, and a phone call to his POA later, I left him with the agreement that he’d continue bathing regularly and change his clothes every day. I held my breath for the rest of the afternoon until I heard him roll out of the elevator. To my most pleasant surprise, he changed for dinner! Had we continued to take this situation at face value, I’m confident that it would’ve gone an entirely different route.

The fact that this nonno never mentioned his dilemma makes no sense, but with dementia, nothing does. Whether he was too embarrassed to bring it up or just flat out unbothered is irrelevant; what’s important is that we gave him the benefit of the doubt and dug deeper. We nixed face value and investigated, and I can confidently say we’re all better off for it.

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.

Little Mamma

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As if it wasn’t already evident from previous posts (and my Instagram bio), I am a huge dog lover. I worked through undergrad and grad school at the most incredible kennel, and I grew up with Shepherds and Labs. I’ve always hoped to somehow combine my love for dogs and seniors – to do meaningful work that involves both. This weekend, I took the first step toward doing just that: I rescued a three-month-old puppy. I know, I know…I work 65+ hours a week, I’m never home, and to say I travel often would be an understatement. I promise there is a method to my madness.

It’s no secret that the effects dogs have on people of all ages are immense. Within an instant, they can make us feel happy, loved, and safe – simultaneously excited and calm. Physically, they keep us active and in turn help our hearts. Dogs reduce stress (except during the housebreaking stages perhaps) and teach us lessons. For seniors especially, they can be pivotal in decreasing loneliness and improving mood; dogs live in the here and now. They don’t worry about tomorrow, and according to Dr. Jay Granat, tomorrow can be very scary for someone who is elderly:

“Having a pet helps the senior focus on something other than physical problems and negative preoccupations about loss or aging.”

And focus on them they do. That goes for both physical impairments and cognitive ones. Individuals with dementia (particularly in earlier stages) tend to be extremely stressed, and understandably so; they recognize that something’s wrong but can’t necessarily distinguish it from what is right. They’re not only confused, but also frightened and embarrassed. Here’s where my little mamma comes in:

“I sort of think that anybody with Alzheimer’s could benefit by a friendly little dog. Somebody they can play with and talk to – it’s kinda nice to talk to a dog that you know is not going to talk back. And you can’t make a mistake that way. … My dog knows things about me before I know them myself. … The one thing I know is that the dog is with me, and when she’s with me I at least have some solace, even if I don’t know the way.”

– Cary Henderson, Partial View

Rosie, that’s your cue. Introducing the newest member of our team and family:

 

The impact this little girl has had on our residents in three short days is immeasurable. I’m completely blown away. I have no doubt she will continue to amaze me. She is, after all, a dog ❤ one of the only beings that will ever love us without condition or complication. Mamma, we are so thankful for you already.

Is Honesty Really the Best Policy?

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Last week, I sat beside a client in the hospital and reminisced of days gone by. Though her short-term memory is shot, she’s able to recite stories from the past as though they took place yesterday. She shared one in particular that’s stuck with me for a few reasons: 1) it was hilarious and 2) it hit really close to home. This nonna (who I’ll call Lo) and daughter (D) recalled one summer at their country home, where they took in a baby raccoon that had been abandoned by its mommy. Four-year-old D affectionately named him Rakki and they bonded instantly; she dressed him in tiny outfits and turned a bottom drawer into a bedroom.

September approached and so did the inevitable: it was time to part with Rakki. Obviously D was heartbroken, but in true mom fashion Lo stepped in and made it better. Uncle Eddie lived on a farm full-time in Pennsylvania and was happy to adopt his furry nephew. Perfetto! The story doesn’t end there, though. Lo and D outlined the rest of Rakki’s thrilling life, including marriage, kids, and a subsequent (yet civil) divorce. Lo got a kick out of filling me in, especially when she revealed that they did not, in fact, ship Rakki to PA – he went right back where he came from (the back yard). We could not stop laughing.

The Rakki tale hit close to home because my parents told a similar lie to me: after finding that an egg had fallen from its nest and opened prematurely, I was panicked. We were on our way out, but my mom assured me that if I scooped the baby up and put him by the Virgin Mary, my dad would rush him to the vet when he got home from work. As far as I knew (until my mid-f’ing-twenties), he did just that: Dr. Wilson patched him up and sent my tiny bird to live on a farm in Pennsylvania. Was the PA farm anecdote a Jersey parent thing?! Was it so that we wouldn’t ask to visit? Regardless, the elaborate fibs our parents told were not simply for their own amusement, nor were they to hurt us. On the contrary, they were for our own best interests – to protect our little hearts.

D didn’t find out the truth about Rakki until adulthood, just as I was kept in the dark about the bird. It makes sense considering as kids we’re taught that lying is both awful and unfair. On top of that, we learn to never lie to our parents or to people that we love. Being dishonest with someone with dementia, then, logically sounds appalling. In reality, it can be essential:

“Those with dementia often struggle with logic, rational thought, sequencing, and emotional control. Therapeutic fibbing may be may be appropriate when telling the truth would cause pain, anxiety, or confusion, or when the person with dementia is experiencing life in a different “time zone”.”

Sometimes, a fib may be the kindest thing you can say to your loved one with dementia, though it’s easier said than done:

“To varying degrees, many of us as adults still feel that our parents are parents and that we, the children, are less assured, less capable, and less “grown up.” [We feel guilty for being untruthful.] The trouble with guilt is that it can keep you from making clear-headed decisions and doing what is right for [your parent] and the rest of the family.”

– The 36-Hour Day

Remember that the fibs you tell are not intended to hurt your parents, just as theirs were not to you. Shake the guilt and be creative; adaptation is the key to success. There’s no one-size-fits-all when it comes to this stuff. Accept the illogical and embrace absurdities. If your nonna insists her car’s outside and she’s got somewhere to be, remind her that “it’s in the shop.” Show her it’s not out front and offer her a ride. Validate her feelings. If nonno needs an aide post-fall but is too prideful (and too cheap), confirm that it’s just temporary and covered by insurance. Empathize with him: a guest at home is not ideal but the doctor wants him stronger (plus it doesn’t cost a thing!). Think outside the box and go with it. After all, they did the same for you.

How To Drive Yourself Crazy Caring for Your Loved One with Dementia in 5 Easy Steps

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Books, open forums, support groups, blogs: there are numerous platforms that offer advice on what to do when your loved one has dementia. A simple Google search alone yields over 1.5 million results in half a second. While often helpful and insightful, I’ve come to find that there’s a benefit to learning what not to do, as well, especially when given relatable examples that might just sound familiar. As promised, below are five easy steps to drive yourself crazy when caring for your loved one with dementia:

  1. Orient them to reality: Due to the nature of her disease, your nonna may revert back to another period of time in her life that she now believes to be the present. It’s possible that you’ll find her worrying about her parents who reside nearby, not in Heaven, or a job she’s still committed to, not retired from. When such situations arise and anxiety and confusion persist, comfort her by bringing her back to reality. Firmly remind her that it’s 2017, she’s 96 years old, and obviously completely losing it.
  2. Argue: On a similar note, once you’ve explained to your nonna that she does not, in fact, have to catch the 5:00 bus, listen to her rebuttal. Consider the points she’s made and quickly call attention to their absurdity. Laugh at the ridiculousness and respond accordingly, reminding her that she hasn’t lived in Hoboken in 35 years and her place of employment is now a parking garage. Oh, and the mom and dad she’s worried about? They’re dead. Duh!
  3. Repeat yourself: When brought back to the present, it’s not uncommon for your nonno to voice concerns. After all, he’s living in a totally different reality than that which was just described to him. He’ll have some questions, surely, and your answers are important. If and when he’s still perplexed, simply repeat yourself: seriously, say the exact same thing you just stated as if he didn’t hear you. Works every time!
  4. Rush them: Patience is to be practiced on naive children, not seniors who should know better. If your nonno seems to be having a difficult time following through with trivial, everyday tasks like getting dressed, try a tough-love approach. Put some pressure on him: set time limits and outline strict consequences. Stress can be a motivator, too!
  5. Expect them to be who they’ve always been (and take it personally when they’re not): In the same breath, keep in mind that older people are set in their ways. Not only does your nonna know what she’s doing, she’s also got a motive behind her actions. Know the games she plays and don’t feed into them; make it clear you’re not down for nonsense and encourage her to get it together or else (nursing home, anyone?!).

Seriously, I cringed just typing the above. Unless you simultaneously hate your nonno and love self-harm, please don’t practice anything on this list. In fact, do the opposite. My examples may read humorous and even a bit extreme, but it’s not uncommon for caregivers to find themselves in similar, equally frustrating situations. Always keep in mind that what you’re now experiencing is the disease, not the loved one you once knew. Be patient and be kind. To keep yourself from truly going crazy, just go with the flow; dementia’s demons foster arguments you will never win and changes you cannot control. The only one whose outlook can be altered is your own.

TSA, It’s Me Again…

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Hemingway was so wise. The above is one of my favorite excerpts from “For Whom the Bell Tolls,” and it’s a lesson of which I’m constantly reminded when spending time with my loves. Many of them were not as fortunate as I am to realize the validity of that quote at such a young age. Some, however, possess an inspiring “better late than never” attitude.

I met a woman this week who toured my community on behalf of her dad. I knew she had just returned from a European vacation, but it truthfully came as a surprise to hear that it was one her father not only attended, but booked and planned for his family.  At 87 years old, this determined nonno is simply not willing to leave items on his bucket list unchecked. He realizes now more than ever that the clock is ticking; if he doesn’t see the places he’s dreamt of now, he may never get to them at all. A bigger motivator/quasi-roadblock (depending on your outlook): he has dementia.

My spirit animal nonno (I’ll call him J) is in the earlier stages of the disease process. He sadly knows there are changes happening to his mind, and he’s terrified of their consequences. As is common in diseases like Alzheimer’s, short-term memory loss is one of the earlier symptoms one can recognize:

“The hippocampus takes our immediate thoughts and impressions and turns them into memories. Alzheimer’s attacks the hippocampus first, so short-term memory is the first thing to fail. Eventually, new memories become impossible to make and learning is a thing of the past. Without knowing what just happened, it’s difficult for people to judge things like time, place, and what’s going on around them.”

–The Forgetting

In his case, J is constantly misplacing things. He’ll store his online banking passwords somewhere safe, for instance, only to be on the phone with his teller a day later to reset what’s now forgotten. Even more alarming IMHO: he’s lost his passport three separate times. His angel of a daughter has expedited new ones, knowing how important that document is to her wanderlusting father.

J is on a race against a clock with unmarked intervals. Dementia lays no clear path and gives no notice as it changes course. Imagine how terrifying it is, then, to know your days are numbered.. to recognize that sometime soon, you won’t be truly you anymore. How debilitating that fear must be:

“Alzheimer’s is a lot of stress, mainly because you know what you have been earlier and you know very well you’re not that good now and it’s real hard to reconcile. … We really do want to be like human beings. We have so many fears: the fear of forgetting things, the fear of tripping over something. Our speech is not too clear sometimes and our feelings are hard to sort out many times.”

-Cary Henderson, A Partial View

This month, J killed it in Europe. He walked the cobblestone streets of Rome, ate French bread in a Parisian café, and gambled in Monte Carlo. He was happy and he thrived. God willing, if he’s still able, he’ll visit Japan and Cuba next. Without a doubt, he’ll fiercely battle this disease and fight for what he loves – as long as that next passport’s expedited.

What Time’s Supper?

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This afternoon, one of my loves frantically stopped me in the hallway as I passed her apartment: “Chris, can you help me? Please, please help me for a minute?!” She was visibly panicked as she reached for a notebook and pencil from her rollator. Shakily, she wrote down 4:45. “Supper is at 4:45. 11:45 is lunch.” She repeated and re-wrote, “4:45, 11:45.”

While this behavior was without a doubt concerning and definitely out of character, I can’t say that I was completely surprised; yesterday, I affectionately reminded her of my 3PM program, to which she replied, “I just have to get to supper first, then I’ll be there!” A little strange, but I assumed hoped she was having a late lunch and simply slipped and called it dinner. To my (and her) disappointment, she was shooed away by the wait staff – supper was not for another two hours. Oh, and to be clear, this nonna is not a dementia resident. 😦

With a lump in my throat and a heavy heart, I spent the next half hour drawing clock faces and timetables. She was able to without hesitation read me the time displayed on her watch, yet she had no idea what those numbers meant. She confidently (and accurately) explained which hand was for minutes and which for the hour, and repeated her seating times and the meals served at each. When it came to tying the two together, however – that clear number and its obscure meaning, she simply was not able. Understandably so, she was an overwhelming mixture of scared, upset, confused, and mortified.

It’s pretty widely understood that people with dementia have a warped sense of time; their reality orientation may be off by several years. In other words, they might think they’re decades younger than they actually are, in turn mistaking adult children for siblings or a frightening, unrecognizable mirror reflection for someone else’s. We also get that they lose sense of the passage of time, therefore experiencing a shorter attention span and not comprehending how long it’s been since some event occurred. Seemingly less implicit, however, is the fact that the ability to read a clock may be lost early in the course of the disease: Even when a person can look at the clock and say, “It is 3:15,” he may be unable to make sense of this information. Could you imagine? Obviously, my love was distraught today, and I don’t blame her one bit:

“Not being able to keep track of time can worry the forgetful person. Many of us, throughout our lives, are dependent on a regular time schedule. Not knowing the time can make a person worry that he will be late, be forgotten, miss the bus, overstay his welcome, miss lunch, or miss his ride home. The person who has dementia may not know just what he is worried about, but a general feeling of anxiety may [occur].”

– The 36-Hour Day

There’s no one-size-fits-all when it comes to these difficult situations; everyone is unique and will respond differently to your approach. In our case this afternoon, I felt a new watch was a solid first step. It took just minutes to find one on Amazon with daily alarms and a large display. She’ll be alerted every mealtime and, given her current cognitive state, should hopefully make her way to the dining room with less anxiety and much more confidence. And if she arrives at 11:45 for lunch but calls it supper, I’ll *still* consider it a win and cheerfully escort her to her seat.

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

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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.