Friday, November 20, 2015
Think about it, folks!
The primary role of government is NOT to provide security or protection, as many advocates claim in regards to pulling up our national drawbridge to Syrian refugees.
The primary role of government is to ensure that our human rights are protected, and there's a big difference.
Presuming that our government exists primarily to protect us from physical harm is short-sighted at best; and at worst, potentially lethal to human rights.
After all, what good is being protected from "harm" when we can't think, act, speak, and congregate as we wish?
The Soviet Union did a good job of protecting its citizens, but who would want to live in that environment of civil oppression?
There is a growing wave of security-minded zealots in the United States who want to be able to control our population through official scrutiny and incessant oversight. We've already resigned ourselves to the fact that our government knows far more about each of us than we likely do ourselves. Our banking transactions, credit card purchases, drivers license numbers, medical records, and airline ticket purchases are all strictly monitored. Security cameras record much of our movement in public. Toll tags and cell phones track where we go, and when. And all of this data is recorded and stored by people we don't know for a length of time we don't know.
To be used in ways we don't know.
Part of the trend towards hyper-security is driven by atrocities like terrorism, but part of it also involves our government's desire to control us. Politicians on both sides of the partisan spectrum have already admitted this. So why do we keep feeding our government's thirst for control by parroting the grim hawkish mantra about physical security being our government's top priority?
After all, if we're physically secure yet unable to find privacy or think and act freely, how wonderful is that?
So the next time you hear a politician or media personality sternly reminding you that your government's primary role is to protect you, don't buy it. I want my government's primary role to be protecting my civil rights. And my civil rights extend to more than my physical safety. The government can turn my physical safety to my disadvantage if they've already taken away my right to champion my independence.
Frankly, I'm surprised at how gullible all of my evangelical cohorts are in this matter. On the one hand, we complain about our religious freedoms being taken away, and then on the other hand, many of us want to give the government a responsibility that could compromise our religious freedoms in the future. If you say that protecting us from physical danger is what Washington should be doing, how long do you think it will be before some left-winger convinces enough people that Christianity poses some physical danger to society in general?
Now do you see why "national security" is not government's primary role? For your sake and mine, I hope so.
Thursday, November 19, 2015
Sarah Palin has written a devotional.
To those who may be unfamiliar with the jargon proliferating within our vast evangelical industrial complex, a "devotional" is a book of daily meditations intended to provide encouragement and insight regarding our faith.
Many famous Christians have written at least one devotional. Devotionals are kinda like the secular world's children's books; if you're famous, or a wanna-be, it's become expected that you churn out something literary, and devotionals are the easy projects in Christianity that children's book are for Hollywood celebrities.
Palin, of course, has already become an established writer within evangelicalism, which probably says more about the literary standards of evangelical readers than Palin's literary talents. She's written a book defending Christmas, in addition to a couple of autobiographies. But adding a devotional to her resume builds her theological credibility in a political party that apparently believes there's no such thing as too much patriotic hermeneutics.
(Hermeneutics, by the way, is the process of studying literature, like the Bible.)
Indeed, Sweet Freedom: A Devotional makes no pretense of being anything other than a celebration of Palin's belief that God votes hard-line Republican. Just listen to any of the many interviews she's been giving recently as part of her book's publicity tour.
On Mark Levin's show, for example, Palin won a questionable endorsement from her self-proclaimed Jewish radio host, who casually tells his listeners that they don't need to be a Christian to enjoy Palin's devoutly-American devotional.
A devotional you don't need to believe in Christ to enjoy? To what kind of Christ has Palin devoted her book, then? Well, perhaps unsurprisingly, it's a devotional celebrating Christ as a proud supporter of things like open carry.
Indeed, in the several interviews of hers that I've reviewed, one of the first things she trumpets about her devotional is her discovery that Christ encouraged His disciples to bear arms. And she's not talking about the toga look of their day.
Now, please understand: I'm no gun-control person myself. Guns don't scare me, as long as they're owned by people who respect them and are trained in their proper use. Considering how lethal they can be when used improperly, I think gun owners should have permits for their weapons. But I don't see the merit of placing legal limits on the number and types of firearms an individual can or should own. Why not? Because the people who want to commit crimes with guns probably won't abide by any laws controlling the number and types of guns they own in the first place.
But a lot of conservatives love their guns. And speaking of hermeneutics, conservatives tend to read a lot more into the Second Amendment than is actually there. Combine that propensity for gun worship with a savvy politician who knows her target electorate, and is willing to boldly misinterpret the Bible as a divine homage to America's ethnocentric exceptionalism, and perhaps it was inevitable that Palin would pen a devotional enshrining everything it takes to keep your name in the fickle political press.
Consider what Palin told talk show host Dana Loesch:
"In the Bible it says Christians are going to be persecuted. You know, don’t we wish that it said ‘mmm, we’re not going to be persecuted’. But we are. But that doesn’t mean that we have to sit there and suck it up and just accept it all. No, we have to fight back. It tells us in the Word - in the Bible - that we are expected to arm ourselves. Luke 22 says Jesus told his disciples, 'Hey, take up your arms. Sell you cloak or whatever it takes to go buy a sword and arm yourselves and don’t wait for somebody else to do it.'"
Okay, now let's look at the actual passage of Scripture, and see how accurate Palin is. Here we are, from Luke 22:35-38:
And he said to them, “When I sent you out with no moneybag or knapsack or sandals, did you lack anything?” They said, “Nothing.” He said to them, “But now let the one who has a moneybag take it, and likewise a knapsack. And let the one who has no sword sell his cloak and buy one. For I tell you that this Scripture must be fulfilled in me: ‘And he was numbered with the transgressors.’ For what is written about me has its fulfillment.” And they said, “Look, Lord, here are two swords.” And he said to them, “It is enough.”
Hmm. Two swords are enough for 12 men. Is that a ringing spiritual endorsement for the Second Amendment? And let's not rip this idea out of context. A few verses later, when one of the disciples (the Apostle Peter) cuts off the ear of a soldier who's come to arrest Jesus, the Messiah - almost apologetically - heals the soldier instantly. If that isn't a rebuke about our appetite for lethal weaponry, I'm not sure what it is.
Several other fallacies exist between this one excerpt from Palin's imagination and actual Scripture, not to mention some complex prophetic themes buried in the thick allegorical tone of this passage that neither Palin nor I are qualified to explain. But you get the point.
Besides, there's this other verse, from another, parallel account of Jesus' arrest in the Garden of Gethsemane: "He who lives by the sword dies by the sword."
So, would Christ advocate for the Second Amendment if He were bodily living in the United States today? I won't be like Palin and presume to put words into His mouth, but from the passage she's picked to argue her point, Luke 22, I'd say that Christ seems a lot more interested in what we do, rather than whether we have the legal right to amass a large number of tools with which to do it.
Meanwhile, I can't help but be drawn to Psalm 20:7, which reminds us of where our trust is supposed to lie - and it's not in weaponry. "Some trust in chariots, and some in horses, but we trust in the name of the Lord, our God."
Yup, Sarah Palin has written a devotional. But in her hands, the pen really isn't mightier than the sword.
Wednesday, November 18, 2015
ISIS is winning the public relations war in the United States, and they haven't even bombed us yet.
From governors playing to fears from their citizenry about welcoming Syrian refugees, to right-wing websites almost enthusiastically predicting future terroristic events, the one battle that almost never reaches a battlefield or courtroom is being quickly won.
That battle is the PR battle - the fight to control how people think. And ISIS wants us Americans to shiver in fright and quake in dread of the misery and mayhem they represent.
ISIS wants us to fear them, and fear them completely. If they can't convert us to their brand of Islam, they want us to suffer for not converting! They want to destabilize us and subdue us. They want to undermine whatever religious or political solidarity can still be found in America. ISIS wants to dominate our consciousness, fill our airwaves, and be relevant no matter the topic. Sports? ISIS. Rock music? ISIS. Air travel? ISIS.
Drones? The Pope? Disney? Oil? Christmas? All touched by ISIS, at least according to this afternoon's Drudge Report.
All this frenzy, and ISIS has yet to perpetrate anything concrete on American shores.
It's not like ISIS doesn't like all of this negative attention. This is what they want. So far, America's mighty media machine - and, ironically, America's right-wing media machine - is playing right into ISIS' hands. ISIS wants us second-guessing. They want us blaming fellow Americans, and contemptuously taunting those fools still self-righteous enough to think welcoming refugees is some sort of goofy humanitarian gesture.
ISIS doesn't want Syria's refugees to enter the United States any more than most conservatives do. ISIS wants as many people to schlep through these dark days in as much agony as possible. Sure, to ISIS, we're all infidels worthy of death, but they can't kill all of us. Yet, anyway. So why not do the next worse thing, and make as many of us as scared, conflicted, and vulnerable as possible?
While ISIS may have a surprisingly robust budget, and a remarkable ability to recruit soldiers online, they don't yet have the worldwide network of operatives and jihadis to efficiently foment large-scale panic. So they've taken the liberty of letting hawkish right-wingers do some of that job for them. And of course, it helps when the arch-enemies of conservatives, those flaky liberal patsies, have nothing but a stale old "compassion" argument to keep chirping into the gale of hysteria over refugees. There's nothing that stokes one's indignation quite like being told you're too hard-hearted to think of the plight innocent Syrian civilians are facing.
Of course, for many conservatives, being "hard-hearted" is considered a badge of honor. But we ain't seen nothin' yet when it comes to hearts being hard.
And that, my fellow Americans, is what ISIS is banking on.
Monday, November 16, 2015
Science teaches that with one key trait, we humans can distinguish ourselves from all other animals.
That trait involves our ability to process information in a rational way. We don't just react; we have the capacity to apply a range of intellectual resources to improve a particular situation.
Therefore, just because a group of humans may choose to express their emotions in a vulgar, bestial fashion, the rest of us have the option - and indeed, the obligation - to meet that inhumanity with something better.
Last Friday, a rogue band of Muslims went on a killing rampage in Paris, France. Initial clues regarding the identities of those terrorists indicate at least one of them may have been a refugee from Syria's ISIS-dominated civil war. So it hasn't taken long for many right-wingers across Europe and North America to call for an immediate end to the acceptance of refugees from Syria and the Middle East.
Indeed, the refugee crisis from the Syrian conflict has already proven to be a financial, political, and logistical nightmare for Europe, whose liberal immigration policies for war refugees have come under unprecedented strain as hundreds of thousands of displaced Muslims from across the Middle East and northern Africa flood the continent.
Syrian refugees have begun trickling into the United States as well, with increasing numbers predicted to arrive as Europe reaches its breaking point.
Before that trickle turns into a torrent, however, an easy way to try and prevent a repeat of Paris' Friday-the-13th on our soil would be to immediately stop welcoming Syrian refugees. At least, that's what knee-jerk reactionaries say.
Even if two or three terrorists can get through amongst an overwhelming tide of non-violent refugees, that's two or three too many. Right?
Or... if we're going to be smarter than a horse or an ant, don't we have to think deeper about this? Are provincialism and petty patriotism good expressions of intellectual resources?
First, we need to understand why last Friday night happened. Was Paris merely a soft target, or is its cosmopolitan reputation more symbolic of hedonism in general? Were the terrorists primarily exploiting the refuge crisis?
Maybe we can deduce those answers at this early stage in the aftermath. But there are more questions. And harder ones. For example, how much has America's botched militarism within Islam contributed to the radicalization of Muslims across the world?
After all, it's impossible to argue that Iraq was less stable before the US-led invasion tied to 9-11. That's been the Bush family's worst legacy. The Obama administration's amateurish indulgence of the "Arab Spring" has been almost as disastrous. And it's impossible to argue that any Western force has been able to tame Afghanistan. Can we really expect that none of these debacles will have consequences?
This isn't merely about politics, or even humanitarianism and compassion.
Consider what might happen if all Western countries immediately closed their doors to Syria's refugees. What are all of those displaced people going to do? At this very moment, there is a flow of homeless people surging across the Middle East and Europe. This isn't a theory, or a hypothetical situation. People with blood like yours and mine are literally fleeing their homeland. This means that they've made a critical, bitter decision based on immense conflict. They're not just on vacation, or taking a tour. If anybody has an intrinsic right to act on animalistic instincts of self-preservation, isn't it these folks?
The word "desperate" comes to mind when describing them.
Now, when anything flows, that flow doesn't usually just stop without causing some sort of ancillary action. Usually, if something stops a flow, there is a build-up of energy that eventually amasses enough strength on its own. Then what happens with that mass of energy?
There is a simplistic logic in the presumption that keeping Syrian refugees out of the United States - even if it creates a logjam of human misery in Europe - could also confine any further violence to Europe. But in our age of communication, travel, and technology, how can we be sure? Besides, as America's current problem with illegal immigration shows, our borders are already pretty porous. Only law-abiding people respect international borders - it's what many right-wingers already say about migrants.
The raw reality is this: Syria's refugee crisis represents human kinetic energy created by deeply flawed politics both within Syria and across the political spectrum. It is the result of not only domestic problems within Syria, but diplomatic bumbling and machinations from the White House to Downing Street to the Kremlin. Fear ISIS and Islamic jihadists by all means, but we can no longer pretend that modern-day Muslim-backed terrorism has been fomented in some desert vacuum.
Politicians look for simple fixes, and it sure sounds simple enough to close borders and prevent refugees from getting in. After the media saturated our consciousness with the horrors from Paris, people who desperately want to feel safe will be tempted to react in short-sighted ways, rather than peek across the broad train-wreck of factors that contributed to last Friday's attacks.
What really needs to happen is for the situation in Syria (and much of the Arab world) to stabilize enough for refugees to return home. That will not happen overnight - if it happens at all. And it will mean that we sanctimonious Westerners need to relinquish our notions of imposing Judeo-Christian and Greco-Roman democracy on Arabic cultures. We've never been able to convert any Muslim country from even the most liberal interpretations of Sharia law. Indeed, as the West marches incessantly towards secularization - a reality for America many evangelicals are only now beginning to fear - many Muslim countries have been vilifying secularization, especially as modern communication technology exposes more of their people to it.
This all means that the Syrian crisis isn't going away anytime soon, so we need to be smart, not scared.
With so many moving parts to this conflict, how is it possible to latch onto one aspect of it - the movement of refugees from a marginalized, war-torn country to more stable and prosperous ones - and expect to diffuse it without addressing its causes?
Meanwhile, there remain those humanitarian and compassionate considerations that could go a lot farther in diffusing some of this crisis. Sure, the cynic in me is aware of the uncomfortable chance that "no good deed goes unpunished." But even at the rates of refugee acceptance we're talking about for America, the numbers would not be large. Our portion of refugees to welcome would be a token, considering the millions who are displaced. Surely the integrity we would demonstrate on the human level would be of greater value than the provincial security our refusal wouldn't guarantee anyway.
That's not being cavalier when it comes to security. But if security is all that America is about these days, how are we any better than marauding lions?
(By the way, in western Africa these days, lions are an endangered species.)
Tuesday, November 10, 2015
For Part 1, click here.
For Part 2, click here.
For Part 3, click here.
19. Shoes and Socks
Some dementia patients seem to develop a peculiar obsession with their shoes and socks. I've already told you about Mr. Laurel, the gentleman at Autumn Leaves who wears mis-matched shoes. And never with socks!
The bank CPA hardly ever wears shoes at Autumn Leaves; she walks the halls all day long either in her stocking-feet, or bare-footed. Or, often, with one sock on, and the other sock left hanging neatly on a hallway hand rail at the other end of the building. Or simply placed on a couch, or dropped onto the floor. One of the secretaries keeps a bin behind her desk for all of the stray socks the CPA - and several other residents - leave behind for somebody else to find.
The lady with Lewy Body dementia can't do a lot of things, but one task she can deftly perform is removing her shoes and socks! The staff will put on each sock, and then her slip-on shoes, and practically as if by magic, she'll wiggle her feet, and they'll be bare! It is uncanny. She, the CPA, and several other women don't regularly take off any other garment except for whatever is on their feet. (There is one female resident who frequently unbuttons and removes her button-up blouses; why do staffers continue to dress her in such a top? Because her husband refuses to admit that his wife shouldn't wear such garments, and he insists that her wardrobe be dominated by them, because that's what she used to prefer pre-dementia.)
In our experience, men don't seem to have the same fixation with bare feet. But Dad did eventually forget how to tie his lace-up shoes. Laces also become a trip hazard, so we took the decorative leather strings off of his rubber-soled house slippers and let him go with the strapless look.
20. Going Home
Where is home for you? It's where you're living right now, correct? When you're at work, and you say you want to go home, you mean you want to be at your current place of residence.
Granted, if where you live now isn't as comfortable or nostalgic an environment for you as the place where you grew up, it's common to say that the prior, primary location of nostalgia for you is your "home."
So, when a dementia patient tells you they want to go home, what "home" do they mean?
During his early years of dementia, Dad could remember his home address with ease. He could recognize our neighborhood as he pulled into it off of the main street. He could identify our house as he approached its driveway. He knew where "home" was.
However, things began to get tricky when Dad would be safely inside the house in which he'd lived since 1978, and ask us when we were going home. He'd be tired, or confused, and he wanted us to take him home.
He'd stand at the sliding glass door, looking out onto our wide patio and the backyard he'd mowed for three decades, and ask whose apartment he was in. Was this in Brooklyn? Our expansive, suburban property sure didn't look like the dense urban environment of his childhood!
That's when Mom and I realized Dad was spending more and more of his mental time in his far earlier memories of New York City. At first, we deduced that Dad was "living" in his former home at 755 42nd Street, in Brooklyn, where he hadn't lived since the early 1960's. As his dementia worsened, Dad "moved" himself back even further, to 832 42nd Street, where he grew up. Several times, he was back to his preschool days, on 41st Street - where home had been for him over 80 years ago.
Where is home?
I've already mentioned the resident at Autumn Leaves who frequently waits in a hallway for the evening bus to Maysville. This resident's wife told us Maysville was a town close to where he'd grown up in rural Oklahoma.
Shirley, the nonagenarian resident famous for her red sweaters, constantly pines for Tahlequah, Oklahoma, where she grew up, raised four children, and buried two husbands. Her daughters say she hasn't been to Tahlequah in over half a century, but she can recall details of the place that sound pretty accurate to us.
The bank CPA appears to have no idea where Arlington, Texas, is (the city in which she's lived most of her life, and where Autumn Leaves is located), but whenever Mom or I mention "Maine" to her, the state where she was born, she usually lights up with a big smile.
Last fall, Dad began what would become a regular ritual of his, mostly in the late afternoons and evenings, during that dreaded "sundowning" exhibited by most dementia patients: "I want to go home."
"When can I go home?"
"I'm going to go home."
Yet he was home. He just didn't recognize where he was as his home. It quickly became extremely upsetting to Mom and me, realizing that Dad didn't know where he was. The one place where we usually feel safest and most secure - our home - had been taken from him by his own brain.
And it wasn't just that he didn't recognize his own home. He began to accuse us of holding him hostage, so he couldn't go home. There were times I'd stand before the closed front door as an obstacle to keep him from walking out into the chilly night air. We installed a buzzer on the front door (he never tried to "go home" through any other door in the house) to warn us whenever he'd try to leave.
One winter afternoon, while it was still light outside, I finally let him "go home," just to see what would happen. I followed him as he stalked down the driveway, got the street, and began arguing with me about going home. But he didn't know which way to go! He had no idea where "home" was anymore. It was so pitifully sad to watch. He simply argued with me, as if I was delaying his escape to his home.
If this happens to your loved one, don't be surprised if it breaks your heart. Their desire to go home is something that most dementia patients seem unable to control. And you can't control it, either. We had a big framed poster of Sheepshead Bay, a coastal neighborhood in Brooklyn, hanging over the fireplace, so I took it down and hid it in a closet, thinking the Brooklyn reference was tricking Dad's memory. We stopped closing the drapes at night, and I turned on the backyard lights when it got dark so Dad could see his patio and lawn and understand he wasn't in somebody's high-rise apartment. Mom and I took Dad on tours throughout his own house, hoping that by pointing out pieces of furniture, paintings, and family photographs, he'd recognize where he was. None of it worked.
We finally figured out that "home" for dementia patients isn't a geographic location. For dementia patients, "home" is a state of mind, a place of peaceful refuge from the confusion and anxiety of severe memory loss. "Home" to a dementia patient may look an awful lot like the place where they grew up - back when, as a child, their responsibilities were far less demanding, and their lifestyles far less complex. But "home" isn't really Brooklyn, or Maysville, or Tahlequah. "Home" is that elusive cocoon of serenity and placidity that most all of us probably desire for ourselves, but which doesn't really exist for any of us.
For people of faith, like Dad was, "home" eventually seemed to become a reference to Heaven. For a long while, Dad's speech remained the most lucid when he prayed, and he had a deep faith that Jesus Christ loved him and heard every word he prayed. Even during his stay at Autumn Leaves, Dad would almost plead with God to be taken Home to Heaven. The Bible teaches that Heaven is the eternal Home God is preparing for all of us who believe that Christ is His holy Son. It is a place of perfection, peace, health, and wholeness.
And Mom and I believe Dad really is now finally Home. He knows he's Home, his memory has been restored, he knows who he is and who we are, and he is at peace in the literal presence of his Lord, the God Who allowed dementia to ravage him in the first place.
So, why does God allow people to suffer awful diseases like dementia and Alzheimer's? It's a question that has haunted me for years, and even now, I can't claim to have found an utterly irrefutable answer. But I have come to understand in a better way how profoundly evil our sin nature is to God. In the same way that dementia thoroughly destroys a human brain, sin thoroughly destroys the purity God desires each of us to have. After all, the Bible teaches that God can only look upon purity. That's the whole point of Jesus Christ, His Son, coming to Earth and dying for our sins. Christ' perfect sacrifice purchases our salvation from sin, so God can receive us as His holy people.
Often, I'm tempted to gloss over the heinousness of sin, or the damage and destructiveness sin can wreak upon us physically, mentally, morally, spiritually, socially, politically, and emotionally. Yet now, for me, dementia reminds me almost constantly of how vile and wicked sin is in God's eyes.
Back when I was a youngster, my dear Dad explained to me who Jesus is, and ever since then, I've believed that Christ provides me salvation from my sins. But it's been during these past eight years, as I've had a front-row seat through Dad's journey with dementia, that I've been forced as never before to evaluate what I believe about God, Christ, holiness, sin, salvation, and eternity.
Now that I'm on this side of that awful journey with Dad, I can say that I'm more convinced than ever before that I am not in control of my life, just as Dad wasn't in control of his life. And you aren't in control of your life, either. So who is in control of our lives? It must be God, right? That's what the Bible teaches. Which means God is holy, Christ is His Son, sin is real and really evil, and that salvation from that sin is essential in determining where I spend eternity.
Not that I understand all of this completely, or have yet found perfect peace in the wake of Dad's "Homegoing." But I believe that I have re-discovered my reason to hope in God.
Indeed, it's the same reason any of us have to hope. The reason is that God truly is sovereign. Which means I am not! Yet He loves me anyway, even more than my dear Dad did.
Monday, November 9, 2015
For Part 1, click here.
For Part 2, click here.
For Part 4, click here.
18. Activities for Dementia Patients
What activities can you do with dementia patients? Guess what - this is not an easy question to answer, either! If you're looking for a bullet-point list of activities to try, that's not the place to start. Like everything else with dementia, you're going to have to work harder than finding a list of suggestions.
Why? Well, like many things about dementia, this is a question whose answer depends heavily on the individual patient. Variables include the stage and type of dementia being exhibited by the patient, their overall disposition and competencies before their diagnosis, other physical limitations they may have, and however robust their attention span is.
Indeed, a dementia patient's attention span plays a critical role in how and what they can accomplish. An attention span relies almost exclusively on memory, and what's the hallmark of dementia? An ever-declining capacity for memory, right?
Why is attention span so important? There are many residents at Autumn Leaves who can only remember simple instructions for simple tasks for literally a second or two. I'm not kidding. So, if they can't remember what they're doing, or why they're doing it, the best activity in the world will be fruitless. You'll be spending so much time reminding the dementia patient of basic procedures and reasons, it won't be a positive experience for you, and your aggravation likely will be negatively sensed and processed by the dementia patient.
Sometimes, for example, staff members have to repeatedly remind residents of a task like "sit down." One lady who can't walk will try to stand up out of her wheelchair, and the staff will say gently, "sit down, please;" and she'll obediently say "okay," and sit down. But as soon as her bottom touches the seat of her wheelchair, the resident will begin her process of trying to stand up again. The staffer will say gently, "sit down, please," and she'll say "okay" in the same obedient, monotone voice, and sit down. Yet this process can go on numerous times until a staff member wheels the resident to another room. Is the resident being intentionally belligerent? No, she simply cannot remember the request for more than a second or two. Meanwhile, the staff has discovered that placing her in a new environment - even just another room - usually is enough to "redirect" her attention span to something else, instead of wanting to get up out of her wheelchair.
So when it comes to activities for dementia patients, you will need to factor in the length of time a dementia patient can literally remember what they're supposed to be doing.
Plus, their ability to remember what they're supposed to be doing correlates with their ability to remember how to do it.
During the early years of his retirement, my father used to paint with acrylics and watercolor, work crossword puzzles, draw, read, mow the lawn, and listen to classical music. It wasn't long after his diagnosis of dementia that Mom and I noticed him painting less and less. Finally, he'd become so frustrated in his growing inability to paint what he wanted to paint that he completely stopped what had, for a long time, been his favorite hobby.
Crossword puzzles lasted a little bit longer, but I noticed they became more and more incomplete. Drawing stopped. Dad continued to read his Bible up until the time we finally had to place him in Autumn Leaves - but by then, it seemed as though he spent more time staring at his open Bible than actually reading it - and who knows how much of what he read he could comprehend.
He mowed the lawn up until the spring of 2014, even though the quality of his mowing had already gotten pretty bad. He'd leave gaps of tall grass across the yard, a sloppiness due at least as much to his forgetting to wear his glasses as much as his overall mental decline.
And classical music? Over the years, Dad had amassed a collection of dozens of CDs, cassette tapes, and over 100 old LPs, but about two years ago, we noticed that he never listened to them, or to the all-classical radio station in Dallas. Occasionally, he'd ask me to find WQXR on his Bose radio, but that was one of New York City's classical stations, and he didn't understand that Dallas' station was all his radio could get here in Texas.
So how did Dad spend his days? Well, he spent a lot of time staring at his Bible, dozing, asking Mom and me the same questions over and over, and rummaging through the drawers of the desk in his home office, rearranging all of the pens, pencils, 3x5 cards, nick-knacks, small hand tools, paper clips, and other whatnots countless times. In fact, rearranging his desk drawers, his office closet, his bookcase, and his collection of music CDs soon became his primary activity.
At Autumn Leaves, the staff will give high-functioning residents some repetitive tasks so that the residents will be occupied but also get a sort of sense of purpose and accomplishment. Things like folding letters, stuffing envelopes, folding towels, sorting M&M's by color. They're things "healthy" folks consider monotonous; yet monotony is a valuable, soothing, and healthy thing for dementia patients.
One of the most engaging activities they hold at Autumn Leaves involves a big balloon that a staff member, in a room full of residents, will toss at somebody, and then encourage them to bounce towards somebody else. Even weak and lethargic residents can at least tap the balloon, or let it hit an arm or leg, and thereby make the balloon move. And with a balloon - softer than the softest sports ball - nobody gets hurt. Balloons also move through the air at a slower speed than any other ball, so dementia patients can more easily watch it and visually track its movement, giving their brain and muscles time to coordinate and react to however the balloon is moving.
Some residents could paint quite artistically, and a professional artist with training in coaching dementia patients through crafts was brought in monthly to host a painting workshop. They took Dad in to paint in one of those workshops, however. The artist had cut up bits of scrap wood and drawn a bird on each one that the residents could then paint however they wanted. Dad had scrawled a weak line of yellow paint across his bird, and could do no more. Mom and I almost cried when we saw it, and what it represented: the complete absence of his former proficiency in painting.
So, in what ways can you creatively engage your dementia patient? Be realistic about what you want to accomplish. Even at Autumn Leaves, the number of residents who participate in daily exercises, sing-alongs, "this day in history" activities, and cooking activities represents a small portion of the facility's overall population. Some of the higher-functioning residents get taken on short excursions out to eat or even to the zoo, but those require a high degree of planning and execution so everybody is kept safe and accounted for.
We let Dad do at home whatever he wanted to do, and that was predicated on what he'd wanted to do back before dementia. But your loved one's interests and abilities will decline, and there's little you can do about it except adapt to each new low. Dad used to enjoy fixing his own lunch, for example, but when we caught him trying to microwave something wrapped in aluminum foil, we had to start warming things up for him ourselves. He used to go down the steep embankment to the creek behind our house to feed the turtles, but when we realized his balance was getting bad, Mom simply stopped giving him bread to take down there. And he forgot to ask.
Fortunately for us, Dad was often content to merely sit under the massive magnolia tree in our backyard and watch jet airplanes circle about overhead in the afternoons. But again, his balance was so bad, I'd often go out with him, just to make sure he didn't fall when setting up or closing up his camp chair on the grass.
I'd also sit with him out there so that when he'd ask me whose backyard we were in, I could reassure him that it was his.
Friday, November 6, 2015
For Part 1, click here.
For Part 3, click here.
For Part 4, click here.
15. The "Bad Guy"
Some dementia patients seem to single out one of their loved ones or caregivers to be some sort of "bad guy." Dementia patients can get quite frustrated with their declining memory, and even if they can't figure out what is wrong, they know that somebody must be to blame for something.
And who do they see most often? Probably a loved one, right? Particularly if that loved one is a frequent caregiver. So one of those loved ones may become a target for their anger and confusion.
Remember, logic is one of the first things to get muddled by dementia.
With Dad, for example, I was the one who wound up getting blamed for all sorts of things, from petty misunderstandings with which I wasn't even involved, to Dad's general forgetfulness. At first, it was difficult for me, having Dad lash out against me so. But I came to appreciate the fact that, at least, Dad was lashing out at me instead of Mom. That could have been an even more troublesome scenario.
At Autumn Leaves, we became friends with a devoted husband whose wife, a victim of Lewy Body dementia, would rarely talk with him during his visits. Granted, his wife can barely talk in the best of circumstances, but she would sometimes softly banter with me, or become fairly animated when her grown daughters would visit; yet she'd be strangely silent when her husband was around. And from all accounts, they'd had a very affectionate relationship before her dementia set in.
It seemed that, for whatever reason, this doting husband had become his wife's "bad guy." And there didn't seem to be anything he could do about it.
Another resident at Autumn Leaves has three children; two daughters and a son, and the two men used to do everything together. After his dementia set in, however, the father has become inexplicably brittle towards his son. Another family we know of has a mother slipping into dementia who seems to be systematically vilifying a grown son of hers whom she used to deeply admire.
As far as we can tell, there's nothing any of us "bad guys" should have done differently to keep the full affections of our dementia-stricken loved ones after their memory changed. Meanwhile, plenty of residents at Autumn Leaves don't seem to have singled out any particular person as a "bad guy," so it's not a universal phenomenon in the dementia world.
Nevertheless, if the same thing begins happening in your family between your dementia patient and a close loved one, don't presume it's anybody's fault. Simply chalk it up to yet another manifestation of dementia's bizarre cruelty - or even as a perverted reminder of the closeness you've shared with your loved one all of the years before.
After all, it doesn't seem as though dementia patients pick as their "villain" somebody they haven't deeply loved in their past.
16. Giving Up Driving
When should a dementia patient give up driving? Wow - big question, isn't it? This is a particularly tricky situation, since for many Americans, driving is the quintessential representation of independence.
It's not just a question of the age at which our elderly drivers should relinquish their car keys. Some dementia patients, such as my Dad, did not exhibit the delays in reflex that can make old-age driving dangerous. Indeed, some "normal" drivers tend to have worse road manners than people struggling with dementia!
Yet, beyond independence, the main issue about driving is safety, right? Safety for the driver and their passengers, and for other people sharing the public roadways. Yet how many children are concerned about safety? The reason I ask is that since dementia patients are regressing into their childhood, you likely won't be able to bank on the safety factor for logic in helping a dementia patient give up their keys.
Nevertheless, once your loved one has been diagnosed with any form of dementia, it is imperative that they no longer drive alone. You now have the responsibility of ensuring your loved one's overall safety, and it is blatant irresponsibility to let anybody with memory problems drive anywhere by themself. As hard a task as that likely will be, it's one of those new realities that simply must be enforced. It's for your loved one's good, as well as yours, should they ever get lost while driving alone.
|Dad and Mom at Autumn Leaves, May 2015|
(photo taken with my old flip phone!)
Indeed, the blow to your loved one's independence can be cushioned if they can still drive well enough with you or another responsible adult in the vehicle with them. As far as our family's experience goes, if the dementia patient can maintain a suitable safety record, and as long as you're utterly comfortable riding with them as they drive, foregoing the ultimate showdown over their keys could be a kick-the-can-down-the-road issue.
Let me explain. For our family, realizing Dad had a dementia problem all began with a simple afternoon task in 2007. Mom sent him on a routine errand to a grocery store five minutes from the house. Several hours later - after a panicked evening for Mom and me, trying to figure out where he was - we learned he was at a grocery store half an hour away from home. He'd never been there before, he didn't know where he was, and he didn't know how he'd gotten there.
Fortunately for us, an employee at the grocery store noticed Dad was a bit confused. The employee asked Dad if they could call his home for him, and thankfully, Dad could remember his home phone number (a number he'd known since moving to Texas in 1978).
The very next day, Mom called their doctor, and we officially embarked on Dad's eight-year journey through dementia.
It wasn't until he was seven years into his journey, however, that Dad himself decided not to drive. For a long time, we let Dad drive within a very tight radius around his home, to the bank, grocery store, post office, and church. And either Mom or I always - always! - rode with him. It likely helped enormously that in his career, Dad did a lot of driving to sales calls, so for a long stretch of his life, he'd developed road safety skills that stayed with him long into his dementia journey.
Indeed, being so used to driving, it now bugged Dad that he couldn't just drive off by himself, but he seemed to realize that something was wrong. "I can't wait until I can drive by myself again," he'd often mutter as he and I got in his minivan. But I wouldn't say anything, knowing that he'd never be able to drive by himself ever again. We wouldn't let him get on a freeway, or go outside the approximately one-mile perimeter where all of Mom and Dad's regular destinations were. We never announced that someday we'd have to take away his keys permanently. And when, in the spring of 2014, he told Mom out of the blue that he didn't feel like driving that day, we didn't make a big deal out of it. And he never asked to drive again.
You probably won't experience such a drama-less scenario with your loved one when it comes time for them to relinquish the driver's seat. But as long as you're willing to ride with your loved one as they drive, and establish other rules, understand that a diagnosis of dementia, in and of itself, isn't necessary the time to take away the keys. This will likely be one of those areas where you'll have to play it by ear.
Actually, the fact that Dad, even six or so years into dementia, could distinguish himself as a better driver than far younger folks on the road, probably says more negative things about the way other people drive these days.
17. Sloppy Word Association
Learn how to creatively process your loved one's increasingly sloppy word association. Dementia patients who can talk (many lose their ability to speak) can still experience difficulty in arranging the things they say into a conventional grammatical sequence. They can also spit out words that don't seem to make sense. They'll substitute words that aren't specific to the topic, but if you work at it, often you'll discover that those words may be pretty accurate - if you can figure out how they're related.
For example, the last time Dad verbalized a greeting to Mom, his wife of 50 years, he blurted out, "Hello, Pete!" Peter is the name of his youngest son. So, okay; at least Dad used a family name; the name of a beloved person for him. He didn't get the "Eileen" part, but he associated Mom's presence with somebody very close to his heart, and his brain flipped out my brother's name instead. Oftentimes, that's as good as it's gonna get. Simply take it and move on. At least your loved one can still talk. As I said, many lose that ability, and can merely moan, stutter, become literally mute.
One resident at Autumn Leaves, the former bank CPA who now spends her days wandering around clutching pillows, surprised us all one morning. Usually, this CPA mumbles a series of one-syllable words - usually words that begin with the same letter of the alphabet - and that's simply the extent of her talking. But this particular morning, she was standing with her husband, who was visiting like Mom and I were. We were chatting with one of the facility's activity directors, who was expecting her first child, and had begun putting on weight. And the CPA's husband cracked a fatty joke.
The former bank CPA wheeled around, a scowl immediately clouding her face, and she shook a skinny index finger in her husband's startled face. "NO!" she proclaimed loudly and firmly. "Not my husband!"
She knew that her husband had make a joke at somebody else's expense, and she didn't like it.
Her chagrined husband willingly acknowledged his error. "Fancy her taking this moment to be lucid," he sighed.
Monday, November 2, 2015
For Part 2 in this series, click here.
For Part 3 in this series, click here.
For Part 4 in this series, click here.
Dementia: The Raw. The Real. The Poignant.
There are many awful ways to die. But dementia is one of the worst.
While I'm no expert on the subject, dementia has become a part of my life. At least, as a person who's had a loved one stricken with it. My father fought dementia for approximately eight years, the last nine months of which was spent in a professional memory-care facility called Autumn Leaves.
Even though Dad was the patient, my entire family ended up fighting his dementia along with him. And if you or a loved one has been diagnosed with dementia, that battle will quickly become yours too, whether you're the patient or not.
Here are a few things I've learned from my family's experience that may help make your battle a little less surprising:
1. Explaining Dementia and Alzheimer's
Alzheimer's disease is a form of dementia, just as leukemia is a form of cancer. Dementia is the broader diagnosis, and Alzheimer's is the most common type of dementia. The distinction is important because not everybody with dementia has Alzheimer's. Alzheimer's can literally kill, whereas generic dementia does not.
2. Dementia is More than Alzheimer's
Other types of dementia include Lewy Body disease, which particularly affects muscle control, and even Parkinson's disease. These are potentially-lethal medical conditions whose causes generally have nothing to do with mental capabilities, emotional health, or other psychological considerations. People with dementia are not "crazy," although many dementia patients develop forms of depression in association with their dementia.
3. General Forgetfulness is Not Dementia
Dementia is not simply a problem with one's memory. Forgetfulness is not, by itself, a precursor nor a symptom of dementia. Forgetfulness is a normal part of the aging process. Dementia, on the other hand, is not a normal part of the aging process. It is a severe, abnormal decline in one's memory caused by as-yet-undetermined medical factors in the brain.
4. Can a Person Be Proven to Have Dementia?
How can you tell if you or a loved one has dementia? That's for a doctor to decide, but even then, the only way to prove a person has a disease like Alzheimer's is by an autopsy of the patient's brain.
Dad's process through dementia began with a medical diagnosis of senile dementia (senility) with short-term memory loss. Many doctors today consider "senility" to be a dated or obsolete diagnosis, but others use it as a convenient term to describe a moderate level of dementia. For years, his neurologist insisted that Dad had a generic, moderate dementia, but not Alzheimer's. It wasn't until Dad's last visit with his neurologist this past December that the doctor finally used the "A" word.
6. My Dad's Final Diagnosis
What finally convinced Dad's neurologist to diagnose him with Alzheimer's? It was a combination of factors Dad had been increasingly exhibiting for several months, including severe emotional aggravation, paranoia, difficulty with keeping his balance, and extreme forgetfulness. He'd be inside the home in which he'd lived for 30 years and not recognize anything about it. There would be several extended periods of time each day when he didn't know who Mom and I were. He was particularly belligerent, and a physical danger to himself and us. Combining all these behaviors, and considering Dad's seven years of continuous mental decline, his neurologist was convinced to make his final diagnosis. And it was the only cause of death listed on Dad's death certificate.
By way of information, we're told that Alzheimer's does not usually cause death. Usually, some other health condition, from cancer to heart disease, will be considered the leading cause of death. In Dad's case, however, he had no other health ailment. In layman's terms, his brain simply fell apart inside his skull, and eventually compromised his entire body.
Just as each dementia patient is a unique individual, the ways dementia manifests itself in each patient are also unique. Dad's journey through dementia was affected by his physical make-up, his original personality and emotions, his background, his childhood, and all of the various environments in which he'd spent significant amounts of time during his life - such as Brooklyn, the Army, being a husband, being a son, attending church. It's the deep uniqueness of each human life, and how that uniqueness conditions that patient's battle with dementia, that makes it a difficult disease to diagnose and treat.
8. There is No Cure. Period.
And when I talk about "treating" dementia, make no mistake: there is no cure for dementia. There are medications Dad's neurologist prescribed that seemed to regulate some of dementia's worst symptoms, but nothing reduced or reversed those symptoms. Mom and I would consider Dad to have "plateaued" if a particular symptom seemed to stabilize for a while. But we never let ourselves be seduced by the possibility that Dad was being healed by those medications.
Hey - think about it: If there was some effective medication, procedure, mantra, poultice, lifestyle change, exercise, faith, or mystic out there that could cure dementia, don't you think somebody by now would have figured out a way to mass-market it?
What were the medications Dad took? I'm not going to tell you, because I don't want people running to their doctor with new ideas and medication brand-names to try. If your doctor is good, they'll already know what treatments out there may work best for your loved one.
I will say that Dad was on a popular patch for years, and he went through all of the successive upgrades in dosage available until his doctor at Autumn Leaves finally concluded that they'd ceased to provide any benefit. However, like all other medications, the patch has side effects that I've heard some patients can't abide. It just so happened that for Dad, those side effects did not present themselves.
10. No Proof Dementia Can Be Prevented
Oh, and by the way; just as there's no cure for dementia, there's no proven way to prevent it, either. All those people who say you need to exercise your brain? Don't count on it. Dad did crossword puzzles every day for years before his first neurologist visit. After he retired, he taught himself how to paint with watercolors. He took a class at a local college for painting with acrylics, and his artwork hangs all over his former office at home. He frequently drew little freehand sketches, wrote out Bible verses long-hand on 3x5 cards to help himself memorize them, and learned how to surf the Internet and send e-mails when in his 70's.
And that's not all. One of the gentlemen at Autumn Leaves right now is a member of Mensa, the prestigious high-IQ society. Most of the women at Autumn Leaves are former schoolteachers. There's a CPA, a lawyer, several small-business owners, and a number of high-ranking military veterans at Autumn Leaves. These are all people who used their brains their entire lives. Except for now.
Well, it's no secret that we are what we eat. And I personally suspect that many of the chemicals we put into our bodies from all of the processed foods we eat are exacerbating our chances for developing dementia as we age. However, the head nurse at Autumn Leaves is from Kenya, and when I asked her about the rates of dementia in her home country as compared with the United States, she said that while dementia is rare in Kenya, so is old age itself! In other words, we Americans - with our processed foods - have a much longer life expectancy than people in those parts of the world with fewer processed foods. So don't bet on diet as your salvation from dementia.
12. Some Manifestations of Dementia
As for the various ways dementia expresses itself, consider that the Mensa member now unzips and urinates wherever he wants to - or needs to. The CPA now wanders around mumbling incoherently, carrying decorated throw pillows from one part of the facility to the other, all day long. One of the small-business owners waits at the "bus stop" (part of a hallway near the lobby) most evenings for the bus to Maysville, Oklahoma. And the lawyer? I won't tell you what I saw him doing with an eager female resident one evening in the atrium.
One resident claps instinctively whenever she hears music (including the lobby's doorbell chime), but she almost never talks. Another used to be an accomplished pianist, but even in the short period of time she's been at Autumn Leaves, we've seen her distinct decline, from playing often and quite proficiently, to barely being willing or able to play her favorite piece, "Walking in a Winter Wonderland." One short, petite woman who looks like she'd be a sweet grandmotherly type can curse worse than a sailor. Actually, when they're riled, most of the residents at Autumn Leaves - even my dear Dad - spew vulgarities without the slightest inhibition. Indeed, propriety and decorum are some of the social controls that dementia permanently disables in its victims, often with awkward and embarrassing effects.
13. When is Professional Care Advisable?
When should a dementia patient be placed in professional care? Well, obviously, that depends on the individual patient and their family. Some facilities offer "senior daycare," but changing the schedule and environment with daycare arrangements for dementia patients can compound their problems instead of alleviating them. Particularly in the early years of their dementia, patients need stability, normalcy, consistency, and as much of a continuation of the best environments of their past existence as possible. Another factor complicating senior daycare is "sundowning," which happens late in the afternoon as daylight begins to dim. Mornings may be one thing, but changing the environment of a dementia patient at the end of your workday could present a host of challenges that will make senior daycare unworkable.
For seven years, Mom kept Dad at home, and during that time, it was not only the most affordable option, but logistically, and considering his mental and physical health, it was the most logical one. Of course, some dementia patients have nobody at home to care for them. Some dementia patients who have been highly social during their pre-dementia lives intrinsically benefit from the stimulation of being around lots of other people, even if they're all stricken with dementia.
What you want to avoid is placing a dementia patient in an environment where they could either be ostracized by other residents for having dementia (such as a conventional assisted-living or nursing home), or where they could be preyed upon by younger, stronger, more psychotic residents (such as most Medicaid facilities, which along with prisons have become America's new psych wards). After all, dementia doesn't mean you've got mental problems; it means you have memory problems. There's a big difference.
I developed my own rule of thumb after watching a room full of dementia patients eat: If your loved one can complete a meal in a dining room with other dementia patients, then they're a suitable candidate for living in a memory-care facility.
For years, Mom and I were able to re-adjust ourselves to Dad's steady decline as he reached each new stage. However, last fall, his belligerence and paranoia became significant both in terms of their profundity, and how long each episode would last - sometimes three or four hours at a time. His lack of logic was confounding. He refused to cooperate during showers, for example, stretching a 5-minute task into a 45-minute-long ordeal, with temper tantrums that baffled us even more than they saddened us.
Then there was his paranoia. At least twice, he became convinced I was about to murder him. He'd verbally pray to God a sort of prayer of committal for himself, quivering in utter fright as I tried to assure him that I had no intention or desire to hurt him in any way. Sometimes he didn't know the way around his own home. We had the police out to the house - on his orders! - three or four times last fall, because he said he only trusted the cops. However, when he began to argue with and threaten the officers, that's when we stopped calling them.
Finally, the neurologist told Mom that for her own sake, as well as Dad's, it was time for us to place him in professional care. And moving him from home wasn't easy for us. One of the major deciding factors to do so, however, was that since Dad really didn't know where "home" was anymore, an unfamiliar environment like Autumn Leaves didn't have the impact for him that it would have had earlier in his dementia journey. I would say that when you've reached that point - where they don't know where "home" is anymore - you've come to another benchmark where professional care may be the better option than family care.
14. Dementia's Ugly Process
Throughout your family's journey with dementia, you'll learn very quickly how things that may seem to make your life easier will not do so if they don't make your loved one's life easier! One of the hardest lessons to learn about dementia is that everything soon centers around the dementia patient. And that's not something the dementia patient shrewdly contrives, no matter how selfish a person they might have been pre-dementia.
Dementia is a process by which an adult becomes like a child again; it's development in reverse. Complicating matters, of course, is that the dementia patient can't learn anything; their current behavior is almost completely predicated on their past. A child should be able to build a successive pattern of behavior based on learned outcomes of past behaviors. Meanwhile, a dementia patient operates solely on what they can remember as being habitual - something they've already learned years before. But an increasingly malfunctioning memory is the hallmark of dementia. Therefore, just as you ascribe more autonomy to a young person as they become an adult, inversely, you have to assume more control over the care of an adult stricken with dementia.
For example, the CPA's husband had an expert gauge her mental ability, and the expert figured the former accountant, who spent her career at a major national bank, currently has a brain functioning at the level of a two-year-old. Meanwhile, biologically, she's in her late 60's. And she's had dementia for approximately 10 years, meaning her husband discovered she had it when she was in her late 50's.
That's pretty young, isn't it? That's one of the scariest things about dementia in general, and Alzheimer's in particular. Of all the 47 residents at Autumn Leaves, I'd guess their average age to be somewhere in the high 70's. Not the 80's or 90's, as one might expect, seeing as how dementia is generally considered to be an "old person's disease." One resident, yes, is in her early 90's, quite spry for her age, and able to carry on a fairly logical conversation, at least if the topic is something with which she's been familiar most of her life. Then there is the CPA, who can barely talk at all, or another resident in her late 60's who softly cries most of the time.
Then there's Vivian, a former Navy WAVE, a proud veteran of World War II. Although now in her late 90's, she's as saucy as a wheelchair-bound dementia patient can be, thanks likely to her years of military service in her youth.
The first time we met Vivian was a Sunday afternoon, and Mom and I were visiting Dad in the TV room at Autumn Leaves. The thing about Vivian is that one usually hears her before ever seeing her - Vivian's voice is shrill and distinctive. That Sunday, she was invisibly bewailing her state as a resident of this home with too many hallways. Eventually she pulled herself along in her wheelchair, around the corner, and into the TV room, where some men were dozing as a football game played itself out on the big screen appliance.
"You spend all your life, working hard for your money, getting stuff, and then they put you here, and take it all away!" Vivian was hollering to nobody in particular, although everybody heard her.
Oddly enough, considering how much Mom was paying for Dad's care at Autumn Leaves, Vivian's point was true and accurate. I told Mom later: "that Vivian is a lot more with-it than people give her credit!"
Of course, it was the wheelchair-bound Vivian who, every time I saw her in the dining room, threatened to climb up onto one of the tables and dance.
"Oh, she's always saying she's going to do that," one of the resident schoolteachers would playfully scoff, "but she never does... thank goodness!"
That's another thing I've learned about dementia: You've gotta take those meager reprieves from its horror wherever you can find them.
PS - Here's the real deal: Perhaps you've discovered those smiley-faced soothsayers online or in self-help books who coo about all of the wonderful strategies you can use to combat various negative behaviors exhibited by dementia patients. Well, you can try all of those cute ideas, and maybe some of them will work on some patients.
But here's the down-low, dirty, nitty-gritty reality of dealing with dementia patients:
If they don't want to take a shower, or change their clothes, or get out of bed, or brush their teeth, tricks and gimmicks likely won't work. That's not being negative or depressive, that's simply stating reality. Don't blame yourself as a caregiver for not being able to cajole a dementia patient into doing something they truly don't want to do. Often, you'll either have to wait out the patient, change your own schedule, or otherwise accommodate the patient rather than yourself for a period of time.
Those self-help folks who come up with handy tips for frustrated caregivers are actually only adding insult to injury. "See, it works for Mr. X; you should try to make it work for Mrs. Y." But dementia care doesn't work that way. What's the easiest solution? Come to the realization that you're either going to have to force (gently, yet firmly) the dementia patient to do something they don't want to do, or you're going to have to come up with an alternative arrangement yourself.
This is why caregiving for dementia patients is so stressful.
Basically, the rule of thumb involves the degree to which the task at hand directly impacts the patient's comfort. Not their health; their comfort. For example, should you try to force dementia patients to consume medications that don't correlate with their physical comfort? Why not talk with their doctor instead, and ask why non-comfort medications are still being prescribed for a dementia patient, since dementia is an incurable prognosis?
Other tasks appear to be negligible when it comes to their comfort, but peek behind the scenes, and consider the impact not performing a certain task may have further on down the road. For example, with my Dad, he had such bad teeth, if we didn't make him brush his teeth and gargle with Listerine, he'd have soon developed significant problems in his mouth that would have become very painful for him. No, he could no longer draw the simple correlation between proper dental hygiene and a comfortable mouth, so we'd have to maintain that correlation for him. Sometimes that meant skipping the brushing and trying to get him to gargle (without swallowing it all). Sometimes it meant offering the unpleasant alternative of having me brush his teeth for him - something Dad's stubbornness wouldn't abide. After some meals, his teeth got neither brushed nor rinsed, his attitude was so bad. But we tried to make sure that happened as little as possible.
In my opinion, the objective of proper caregiving for dementia patients is for the caregiver to be suitably confident that they're doing all they can for their loved one. Nevertheless, caregivers need to remember that dementia is going to win this battle in the end, so they must be realistic about it.
It's an arduous, miserable, perplexing, morose, sad, and exhausting business - caring for a loved one with dementia. There are no shortcuts. About the only way you'll know you're doing a good job is if you're having to give up parts of yourself in the process.