Things to Know About Dementia

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.


5.  Senility

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.


7.  Uniqueness

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?


9.  Medications

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.


11.  Diet?

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.

Dad's No Longer Confused

Dad and me at Autumn Leaves, his Alzheimer's facility, this past June.

One week ago today, my dear Dad passed forevermore into the presence of his Savior.  Thanks be to our gracious and merciful God.  Dad is no longer confused, and he's in his right mind.  His memorial service was this past Friday here in Arlington, Texas.  Following is the remembrance I gave of Dad at his service:

As you can imagine, considering the agony of his eight-year battle with dementia, it is difficult to remember Dad in his other, healthy life.  Dementia truly is “the long good-bye.”  But while dementia robbed Dad of his memory, let’s not let it rob ours as well when thinking of him.

Dad was a proud native of Brooklyn, New York, and held a particular fondness for the Brooklyn Dodgers and Coney Island.  He tinkered with photography and roamed Manhattan’s fabled Radio Row back before it was razed for the original World Trade Center.  Once, he drove out to California and back, just to see the rest of this America that New Yorkers often forget exists west of the Husdon River.

During the Korean War, he served as an Army medic in post-World-War-Two Germany.  When he took two severe falls this past year, and was taken to the ER, he made a point of telling everybody who came into his room - every time they came into his room! - that he’d been an Army medic, so he’d know if they bandaged him up properly or not.

It took him 13 years of night school to graduate from Pratt Institute in Brooklyn.  During that time, he helped lead the youth ministry of his childhood church in Sunset Park.  He also worked for a company called Richmond Screw Anchor that developed new ways to hold concrete construction components together.  It would be Richmond Screw Anchor that first sent our young family to Upstate New York from Brooklyn, and then here to Arlington, Texas, where Dad would complete a 42-year career.

He and Mom met as leaders at one of the summer youth camps in Massachusetts to which he’d take teenagers from his church.  They married in 1965 and this past summer, during a fleeting moment of lucidity, Dad told Mom that he didn’t ever regret one day of their life together.

He was a loving father to my brother and me.  He led me to the Lord when I was a child, and he’s prayed for all of us - my sister-in-law and his five grandchildren included - multiple times every day, up until the last year or so.  That’s when he began his most severe decline.  Several times every day, Mom would tell him he had five grandchildren and each time, Dad would gasp in amazement.

At Autumn Leaves, the dementia-care facility where he lived for his final nine months, we’d show Dad photos of his grandchildren, and he’d rave about how good-looking they are, even if he couldn’t match names with faces.

I can’t tell you how appreciative we are of the care Dad received during these past months.  Head nurse Jackie Lomosi and the dedicated staff at Autumn Leaves became like family.  In his fits of paranoia, Dad fired each of them countless times, yet they kept coming to work and tending to his needs.  I’ve seen what they do, day in and day out, and if anybody is underpaid, it’s they.

And there are others I want to recognize publicly at this time.  I’d like to thank Reverend Wes O’Neill and the members of Arlington Presbyterian Church for their care of Mom and Dad.  In particular, we’re grateful for Ron Stockton, an elder at this church, who spent a considerable amount of time in our home last December while we grappled with Dad’s extreme paranoia.

I’d like to thank my pastor, Reverend Mark Davis, and the benevolence committee at Park Cities Presbyterian Church for their extraordinary generosity.  Then there are our family members in Maine and Finland, and friends both here in attendance today and others around the world, who have prayed for us and walked with us during what has been a painful and arduous journey.

It has been through this journey of Dad’s dementia that his one and only wife has personified the virtues of God’s marriage covenant, and it has been through watching Mom’s utter devotion to Dad and his well-being that I have witnessed selflessness and faith in Christ’s promises.  For better or worse, for richer, for poorer, in sickness and in health, as long as they both shall live, Mom jeopardized her own retirement to make sure Dad received the best care possible.  She was and remains convinced that God will supply her needs, even as He supplied Dad’s.

Dad was not a singer, but he was proud of having sung in the mass choir during Billy Graham’s historic 1957 crusade at Manhattan’s original Madison Square Garden.  And of that event, one of Dad’s fondest recollections was of famed blues singer Ethel Waters and her rendition of the 1905 Gospel song, “His Eye Is On the Sparrow,” written by Civilla Martin and Charles Gabriel.

Would that all of us claim these lyrics as our own:

Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heav’n and home,
When Jesus is my portion? My constant Friend is He:
His eye is on the sparrow, and I know He watches me;

“Let not your heart be troubled,” His tender word I hear,

And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;

Whenever I am tempted, whenever clouds arise,

When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches WE.

Mr. Laurel's Style

During the past nine months, I've met a number of remarkable people.

They're all unique, of course; as people are.  But at the same time, these people I've met tend to be remarkably similar, even though they've been born in different places, have different ages, and have done a variety of different things during their lives.

One similarity these people share is their address:  the dementia care facility where my father has lived for the past nine months.  I've already written about a couple of them, and friends have encouraged me to write about more of them.  Yet I've held back, realizing the more I get to know these dear folks, they're still human beings of dignity.  To a certain extent, they're entitled to the same privacy we should extend to anybody who isn't aware that their daily actions are being recorded for strangers to learn about later.

When Mom and I drive up to Dad's Alzheimer place, I'm frequently struck by how anonymous a building it is.  From the outside, it could pass for a rambling single-family McMansion.  Within its brick-and-stucco walls, however, are 43 residents representing a vast panoply of life experiences, yet who can barely remember any of them.  There's a whole community within these walls, from nurses and cooks to janitors, and residents who are quite affluent, and residents whose families - like mine - are spending down their life's savings to spare their loved ones the ordeal of state-funded care.

Meanwhile, you could drive down the street, past this facility, and have no idea the significance of what's inside - or who's living inside.

I've already introduced you to Shirley, she of red sweater fame.  But she's one of the better-functioning members of this curious community.  Most of these patients, like Shirley, are white, but there are several black residents as well.  One of them, Mr. Laurel, has been particularly interesting to get to know.

Mr. Laurel is probably in his late 70's or early 80's, with a head full of dusty-gray hair.  He is extraordinarily tall and enviously thin.  Although his two cloudy eyes tend to aim in different directions, he has a handsome face, as well as a disarmingly cavalier disposition.  And like an aristocrat from another generation, he always dresses for dinner!

Oh, boy, how he dresses!

Let's start with his feet, which are long and often quite swollen, and crusted white from poor circulation.  Mr. Laurel rarely wears socks, because of his puffy ankles, which roll down from under pants that are always far too short.  He also rarely wears the same set of shoes at any one time; almost always, he's got mis-matched shoes on!  Usually they're at least the same color, but one may be a lace-up, while the other is a slip-on.

When he wears his slippers, however, he wears a tan one and a black one.  At least when he's wearing his slippers, though, he also is wearing his elegant silk bathrobe... neatly tucked into his pants.

Yesterday, he was wearing his pants wrong-way around.

And I couldn't count the number of shirts he was wearing.  But they were all smoothly tucked into his back-side-to pants, and the collars of each shirt were methodically folded over the other, like birds' feathers.

Indeed, when he shows up in the dining room, no matter the meal, he's a sight to behold!

One day, he appeared fairly normal, albeit in a thick wool sportshirt, which seemed a bit uncharacteristic for him.  Most mealtimes, Mr. Laurel will sport one of his tailored suit jackets - meticulously turned inside-out.  How he can wear his clothes in ways they were not constructed to be worn - yet also look so neat and tidy - baffles me.

At any rate, I commented to him that with his thick sportshirt, he appeared uncharacteristically under-dressed for dinner.  At least, by his own standards.

"I'm not under-dressed," Mr. Laurel happily countered, grinning broadly as he turned up the cuffs of his thick sportshirt to reveal its quilted lining.  It was like a padded hunting jacket that folks way up north wear when it's freezing outside.

"See?  This here's BLACK!" he exclaimed emphatically, pointing to the shimmering satin quilted lining that, to him, offered the requisite degree of panache.

For the posh folk, of course, black attire is always proper dinner etiquette.

One element of style with which Mr. Laurel is hardly ever without is his ballcap, a black Navy-themed number with colorful embellishments around the U.S. Navy logo.  When I first introduced myself to him, he shook my hand with his long, bony fingers, and then immediately removed his cap.

"This here cap has something on it that will tell you everything you need to know about me," Mr. Laurel promised confidently.  "Let me see... where is that?"  And he fumbled with his cap, mumbling quietly as he inspected all of the stitching and graphics covering it.  Finally, he found what he'd been looking for.

"There!" he exclaimed proudly.  "This is all you need to know about me!"  And his bony index finger was jabbing at a patch with one word on it that read, "Retired."

"Retired!" he laughed in his raspy, tired voice.  "I'm retired Navy! That's all you need to know about me! I survived the Yoo-nited States Navy!"

Hey - good enough for me, right?  If he survived a career in the US Navy, which by many accounts is an admirable feat in and of itself, isn't he entitled to wear whatever he wants to dinner?

This Faith I Need

You know what I need?

I need a faith that is stronger than America's church culture.

I need a faith that is stronger than money, and what we expect it to do for us.

I need a faith that is stronger than music style, preaching style, and celebrity Christianity.

I need a faith that is stronger than race, ethnicity, culture, and nationality.

I need a faith that is stronger than anecdotes, sermon illustrations, and chit-chat before and after worship services.

I need a faith that abides in the pit of my soul, where it needs to flourish among and conquer everything else that I never tell anybody about.

I need a faith that meets the rawness of my emotions and psyche with truth, not platitudes.

I need a faith that responds to sin with truth, not arrogance.

I need a faith that concedes nothing, confesses boldly, confronts gracefully, nourishes lavishly, and persists consistently.

I need a faith that gives me sustained joy, not bursts of happiness.

I need a faith that provides contentment, not mere resignation to that which seems inevitable.

I need a faith that fosters peace, not trepidation.

I need a faith that does not fear.

I need hope.

I need all the things I've heard preachers say Christ can give to His people, but that our church culture seems to strip away and replace with personalities, programs, and processes.

I need Christ in me.  Not America's culture of church.

Sitting Down - an attempt at poetic verse

And now, for something completely different... some attempts at poetry from the opinionated layman.  In this installment, we contemplate one of life's luxuries when living in New York City:

The subway, back when I was a kid.  For everyone today who never knew the subways to be like this,
count your blessings!

"Sitting Down"

Luxuries come in small doses

In New York City.

Down below

Where the scent of urine lingers in fetid air

Where a sliver of concrete is an island

Populated by dozens – even hundreds of people

For only a collection of minutes.

But it can seem much longer than that

When there’s only so much space

On that dirty concrete sliver of an island.

Trains come screeching into and out of the station

Blowing dust and debris and trash

Thin aluminum doors jerk open

And human beings of all sorts pop out.

Some pushed, some stumbling like they were leaning on the door before it opened

Most just rushing, rushing, rushing.

Only when a train is put out of service do people leave a subway car slowly
Reluctantly, wistfully

As if not wanting to leave what a minute before
Had been someplace from which they otherwise would have preferred to escape.

(“Sick passenger” is one of the things you don’t want to hear as a subway passenger

because that means your train is automatically going out of service

and there’s nothing you can do about it.)

So all ashore that’s going ashore

Having bolted from the train

But there’s no pause, no interlude... nope!

Even before the last person exits, others are pushing through the doors, clamoring inside

An intricate weave and bob and dance

As some rush out, and some rush in

Through the same little openings in an aluminum tube.

And let’s not forget the bags

The shopping bags of all sizes from stores posh and plain

The hand-held briefcases with their hard corners

The enormous backpacks with their swinging straps

The diehard travelers with their rollable luggage

Crazy moms with their strollers

Musicians with their trombone and violin cases

The Chinese immigrants with their bags of raw vegetables, meat, and fish

The corporate women with an impressive number of designer leather bags hanging from both shoulders…

Back in the 80’s, punks boarded trains with enormous black boom-boxes perched on their shoulders.

Older women in faded London Fog topcoats boarded trains with a flimsy wire basket on two bent wheels.
Everybody's got something to haul, it seems.

“watchthedoorswatchthedoorsHEYwatchthedoors”

cautions the conductor in a bleak voice that betrays the frequency of the warning

And whether you were able to hear the conductor or not, the doors suddenly spring shut

Whether you’re ready or not
Whether people are nearly sliced in two by the closing doors or not.
After all, the pace of the city can’t stop because you might miss your train

Although some people will give it a try

And push their briefcase between the closing doors

Or their arm, or hand

Sometimes the doors pop right back open as sensors detect the obstruction

Or sometimes they close hard

Or sometimes, to the amusement of those inside the car

They slam open and closed in rapid succession, pounding against the stubborn briefcase (bodily appendages have already been pulled away) like the doors are beating the obstruction into submission.

If they’re quick, the briefcase’s owner can dart onto the train

And everyone can proceed.

And all this within mere seconds.

Life happens fast in New York.

And there – ahhh! – in the middle of the car

But preferably at the end of a row

Or maybe in a corner

There it is

The prize of the subway rider

The throne of the victor, the patient, the weary

The orange square that heralds relief:

An empty seat!

Luxuries come in small doses in New York.
And most subway seats are colored orange.
Which makes orange the subway rider's color of reward.

The rules for the empty seat are at once complex and simple.

If the car is mostly empty, everyone can sit in complete freedom.

If the car is SRO, people may stand out of rare deference to others

Or because theirs is the next stop anyway

Or because they’ve been sitting all day at work
Or because personal space is also a valuable commodity in the dense metropolis.

Obviously infirm people

Wobbling on crutches or with a cane – are oftentimes given a seat

In a magnanimous gesture not wholly forgotten in the City

And obviously pregnant women are given seats too

But that’s about the limit of subway rider generosity.

Its that orange square, however

Gleaming from its plastic frame

That is the prize

People scope the car quickly

Their eyes darting throughout the car even as they dash inside

In an instant, calculations are made

Evaluations of the neighbors of the orange square

Is that guy drunk? Is that woman too obese that she’ll lean on me?  Might that kid mug me?

All up and down the car

And then, in competition with the others who have just entered this microcosm

You make your move, stake your claim,

And

Sit.

Triumphantly

Or sometimes in exhaustion

Or sometimes defiantly….

And then
You think… 

...What’s that smell...?

Honest Abe - In His Own Words

"President Lincoln and Family," an engraving by A.B Walter in 1865
and published by John Dainty, Philadelphia;
from my family's private collection of vintage Americana

 

The following is an essay I wrote last year for Abraham Lincoln's birthday.  I thought it was appropriate to revisit the legacy of our Civil War president as, today, America roils over the legacy of its Confederacy and its most notorious flag:

"I am not, nor ever have been in favor of bringing about in any way
the social and political equality of the white and black races." 
- Abraham Lincoln, September 18, 1858

On this day in 1809, in a tiny Kentucky village, the 16th president of the United States was born.

For all of his modest beginnings, however, Abraham Lincoln would become one of the most pivotal figures in American history.  And after his assassination in 1865, his life would develop a legendary status of almost mythical proportions.  At least among Northerners and minorities, anyway.

For many white Southerners, Lincoln was and has remained a man of tyranny at worst, or duplicity at best.

It has been said that a war's victors get to write its history, and that has indeed been true of America's brutal Civil War.  Although Southern whites have long protested the saintly virtue and stoic resolve that has been inscribed into Lincoln's epitaph, such protestations have been met with derision by a country eager for heroes and anxious to move on from those awful, bloody war years.

It's not that racism didn't - and doesn't - exist in America's North, or that all Southerners were - or are - racists.  The factors that contributed to our Civil War, and its legacy, are far more complex than racism.  There were - and are - raw economic factors, and Constitutional questions, and plain old desperate politicking.  Warring amongst ourselves for four years proved to be the most bitter scourge we've inflicted upon our country to date, and every year, it seems, Lincoln's birthday, or some commemoration of his presidency, increasingly rubs salt into those wounds.

You see, the Lincoln that was wasn't the Lincoln many Americans want him to be.

Ever since I moved to Texas as a teenager, I've heard that the Civil War wasn't about slavery.  It was about states' rights.  Federal officials from the president on down had no right to dictate to states the manner in which they should modernize their economy, which in the South, according to conservative Southerners, was a topic that included slavery only in the context of a labor force.

When I was in college, I heard that the Civil War wasn't about states rights, but about economic prosperity.  The South, thanks to cheap labor from slaves, had become mired in an agrarian economy, while the North was rapidly expanding, thanks to the Industrial Revolution.  The bit about slavery was, more or less, the straw that broke the camel's back.

Yet when I was a small boy, growing up in rural New York State, in a region near Syracuse that was, during the Civil War, a hotbed of Abolitionist fervor, Abraham Lincoln was practically deity.  He won freedom for the slaves because he valued their humanity.  And throughout almost all of my life, I've held to that notion, even if states rights and economics were valid components of the Civil War.  More than anything, I'd been taught that Lincoln was the great emancipator, and I assumed people who claimed otherwise were simply poor losers, or blatant racists.  I never idolized Lincoln, or worshiped his legacy, but since most of the grumblings against him were coming from Southerners who seemed preoccupied by the Civil War, it was easy for me to assume that Lincoln provided them a better scapegoat than their venerated general, Robert E. Lee.

Perhaps, however, it's inevitable that tides turn, even in political history.  Because recently, it seems that more and more questions are being raised publicly about how we should view Lincoln and his role in civil rights.  In 2009, which was the 200th anniversary of his birth, several controversial books about the president were published, and one of them seemed to sum up what many of them were saying.  It was entitled Big Enough to Be Inconsistent: Abraham Lincoln Confronts Slavery and Race, by George M. Fredrickson, and it dared to revive a debate between historians about the level of Lincoln's own personal racism.

Wait, you say - somebody's saying Lincoln was a racist?

Well, actually, it's simple deduction, based on Lincoln's own speeches and writings.  When he was running for the United States Senate in 1858, he mentioned more than once that he did not believe blacks and whites should be socially or politically equal.  He once scoffed at the notion of "negro equality," claiming that only fools believed such a thing.  Even after delivering his Emancipation Proclamation, he was trying to negotiate with some Central American countries to deport America's blacks.  In fact, if he wasn't assassinated so soon after the end of the Civil War in 1865, who knows if Lincoln would have succeeded in his clandestine deportation efforts?  Like John F. Kennedy, who was assassinated before he had the chance to irreparably damage his own reputation, Lincoln died at a sort of zenith of his presidency, before his true beliefs about blacks could have been codified into whatever post-slavery laws he might have pursued during Reconstruction.

To be sure, Lincoln opposed the institution of slavery, but not because it involved the commoditization of human beings.  Lincoln opposed slavery because it provided the South an unfair economic advantage in the eyes of Northern industrialists, who had to hire their employees.  Lincoln also desired to preserve the Union, believing that both the North and the South created a far more formidable nation together than they could as separate entities.  But in terms of black people having the same intrinsic rights, qualities, and humanity that whites have?  No, Lincoln's writings and speeches prove that he did not believe that at all.

So where does this leave us today, as we've come to equate emancipation with civil rights?  The same civil rights that Lincoln, were he alive today, would likely want to deny non-whites?

Some people give Lincoln the benefit of the doubt, rationalizing something about him "being a product of his day," where, for example, it was practically inconceivable even in the North for a black person to marry a white person.  Lincoln's viewpoint, supposedly, contrasts with the progress we've made as a society, where today, racists may frown on interracial marriage, but that doesn't keep it from successfully happening.

Is that enough?  Is taking what's left - Lincoln's practical opposition to slavery on economic grounds - a sufficient redemption of his legacy?  Or might it simply help to explain why many Southerners seem to still be fighting the Civil War, with their continuous refusal - that is often mocked - to embrace the leader who proved militarily superior?  Remember, since them ol' Yankees were the ones who wrote the war's "official" history, it was in their best interests to let their hero's faults slide into the dustbin of inconvenient memories.

For better or worse, a politician like Lincoln likely wouldn't have survived very long in today's world anyway.  Not with our sound-bite news organizations, insatiable social media, and on-demand information technology.  When people now ask where all of our great leaders are, perhaps it's more accurate to wonder how great our past leaders would have been had they been forced to endure the same deep scrutiny our leaders today endure.  Then again, perhaps Lincoln really was a visionary for his day, and the progress he made towards equality - even though he didn't believe in it personally - was as good as could have been made in 1860's American society.  If he were alive today, Lincoln might have navigated our current political waters with the same duplicity many other modern politicians do.  He said what he said back then to win elections.  That's all politicians do today.

What we can learn from all of this is that national leaders can't necessarily be extracted from the day and age in which they lived, and examined by a different era's standards.  This is particularly true in a democratic republic, where a society, as they say, elects the leadership it deserves.  It's one of the reasons why I bristle when right-wingers try to romanticize America's past, and put our Founding Fathers on pedestals.  It's easier to fashion our own nostalgia than it is to wrestle with facts for which we may have to dig.  Or facts which cause us to relinquish long-held beliefs and assumptions.

We're learning that Lincoln wasn't the saint many of us were taught he was, and that he might have even been more of the villain many Southerners have been grousing for generations that he was.  Is that enough to revoke his tenure as one of America's greatest statesmen?

Probably not.  Despite his disappointing shortcomings, he was still a pivotal president, upon whom hinged the direction of a country that hadn't even reached it's centennial when he was assassinated.  He was a racist, but he sought the survival of the union of a country that has come to identify his faults for what they are.  That counts as progress, doesn't it?

Our modern leaders can only hope to approximate such an imperfect legacy.

Beware of Happiness as a Validator

How are things going for you today?

If you are happy, content, or feeling as though things are going well for you, is this optimism really enough to prove that you're in the center of God's will for your life?

Does the lack of deep stress or hardship in your life necessarily indicate that your present happiness is based on the principles God expects His people to embrace?

The reason I ask is that, by default, we often presume that our circumstances have a direct correlation to the quality of our spirituality.  In other words, when our circumstances are oppressive, don't we tend to doubt God's goodness, or that we're doing what He wants us to be doing, or that we're anywhere close to being in the center of His will for our life?

Isn't it in times of great upheaval and dismay that we most often question our faith, or doubt God's goodness, or second-guess His faithfulness?

To be sure, when we make bad decisions, or intentionally sin, the negative consequences we will invariably endure testify to our poor choices.  But is "living the good life" automatically an endorsement from God of our decisions?

Don't plenty of evil people enjoy the luxuries of our world?  And don't plenty of earnest saints face oppression, pain, and grief?

How often do we pause and evaluate our own actions and motivations when we see our lives are going well?  Why do we automatically presume that the good things we experience are coming directly from God because He's blessing our choices?  After all, good things come to some dreadfully horrible people who have no business presuming God is blessing their sinfulness.

And when bad things happen to us, don't we usually recoil in confusion, fear, and doubt?  Meanwhile, perhaps, in some of these bad experiences, God may be wanting to display His mercy and love to us in ways we'd never appreciate if life was floating along all perfect and according to plan.

Might the misery God sometimes allows His people to experience be for us something more valuable than the good things we easily perceive to be blessings?

Not that we should necessarily feel guilty when good things happen to us.  But the good times might not represent for us the validation of our choices and actions that we think they do.

God allows the sun to shine and the rain to fall on both saints and sinners.  It's His providence that sustains His people no matter the weather.

Woe to those who are at ease in Zion, and to those who feel secure on the mountain of Samaria, the notable men of the first of the nations, to whom the house of Israel comes.  Pass over to Calneh, and see, and from there go to Hamath the great; then go down to Gath of the Philistines.  Are you better than these kingdoms?  Or is their territory greater than your territory, O you who put far away the day of disaster and bring near the seat of violence?  Amos 6:1-3

Not that I am speaking of being in need, for I have learned in whatever situation I am to be content.  I know how to be brought low, and I know how to abound.  In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need.  I can do all things through him who strengthens me.  - Philippians 4:11-13

Who among you fears the Lord, and obeys the voice of his servant?  Let him who walks in darkness and has no light trust in the name of the Lord, and rely on his God.  Behold, all you who kindle a fire, who equip yourselves with burning torches!  Walk by the light of your fire, and by the torches that you have kindled!  This you have from my hand:  you shall lie down in torment.  - Isaiah 50:10-11

Quality of a Life with Dementia

After seven years of helping my father cope with his senile dementia, I've learned a lot about the disease.  But after just a month of having Dad in a professional Alzheimer care facility, I've been learning even more.

Up Side of Down

For example, I've learned that an upside-down brain may bring some sort of comfort to Alzheimer patients.  At least two residents at this facility seem to derive significant relief from contorting their bodies so their heads are upside down.  Why else would they bend over so much that their bodies are actually folded in half, with their torso parallel with their thighs, so their ears are level with their ankles?

I've seen one woman hold that position more than once, sitting on a sofa, with the top of her head brushing the carpet on the floor, and frankly, I don't know how she does it.  Or how she can sit in that position for as long as she does - at least 15 minutes at a time.

Yesterday, I saw one poor man splayed feet-up across an upholstered chair, so that his head was propped just above the floor, his face burrowed in the chair's fabric skirt.  He'd figured out how to balance himself in that position so he wouldn't slide off head-first onto the floor.

Converse - Ation

I've also learned how fragile speech can become for dementia patients.  At least two residents who are staying at Dad's facility simply cannot speak coherently most of the time.

It's not that they're babbling or deranged; they appear to be trying to communicate normally.  They pronounce words correctly, and string them together into sentences.  They speak these sentences with a normal cadence, and if you didn't know the English language, it would sound like they're speaking in conventional sentences and paragraphs.  But the words they speak literally have zero relationship to each other.

For example, they could say "blizzard chair coming bathroom Chrysler soup," and look at you as though they're trying to say "it's a sunny day."

So I simply nod and reply, "yes, that's interesting," or something like that.  I've tried to find some thread of meaning that might be running through the words, but there's little point.  Theirs is merely another example of trying to function, but being deprived by dementia of the ability to do so.

One day, Dad was having a conversation with one of these residents - she kinda looks like Mia Farrow - who cannot speak coherent sentences, and I discovered that their entire vocabulary consisted of the word "yes."  Back and forth, between the two of them, with only one word.  Dad can still speak normal sentences, so I'm not quite sure what he thought he was doing, saying "yes" all the time, in response to the other resident's "yes."  Yet somehow, they seemed to have some purpose in their exchange.  Otherwise, why continue to say "yes" back and forth?

Actually, many dementia patients have an extremely limited vocabulary.  There's one tall, slender woman who silently walks around the Alzheimer facility all day, every day, patting on the handrails that line the hallways, and patting on people's shoulders and arms as she passes them.  I call her "Patricia."  You can be a complete stranger, like I used to be, or a fellow resident of hers, and she'll softly pat you without saying anything.  In fact, I'd never heard her speak, but one day, she tugged at a belt loop on my pants, finally murmuring that it must be a "tear" in the fabric before she walked on.

That's still the only word I've heard from her.

Not that Patricia can't communicate well, however.  One afternoon, I went into the secretary's front office to ask her something, and Patricia was sitting, motionless, in one of the chairs facing the secretary's desk.  The secretary explained that earlier in the day, she'd accidentally hit Patricia's foot while pushing a wheelchair-bound resident, so Patricia was spending the rest of the day in the secretary's office, glaring silently at her in protest.

"I keep apologizing to her," sighed the secretary remorsefully, "but this is my punishment."

Red Dress

Red seems to be an important color for dementia patients.  I've already told you about Shirley, and her ubiquitous red cardigans.  Well, one day last week, the normally cheerful Shirley was uncharacteristically glum.  A daughter of hers was visiting with her in the lobby, and I heard her ask her mother why she wasn't wearing her customary red sweater.  I don't know if there was a correlation between Shirley's sour mood and the fact that she wasn't wearing her red sweater, but the next day, the red sweater was back, and so was Shirley's good mood.

Some studies suggest that dementia can affect the color spectrum of a patient's eyes, which makes the color red particularly recognizable to them.  It's been said that red tableware helps finicky Alzheimer's patients eat more, and putting water in red glasses helps them stay better hydrated, because they'll more willingly drink from red containers than clear ones.

At Dad's Alzheimer facility, Patricia once tried to take my raincoat, which is red.  She started patting it and stroking it as it lay across my arm, but then she started pulling insistently at it, without saying anything.  I gently told her that I was going to need the coat when I went back outside, so she finally relented.  Another time, Mom was wearing a red coat, and another resident picked at it, raving admiringly yet incoherently about it.

Otherwise, nobody seems to care what we wear.  In fact, none of the residents seem to care what they wear, either.  One poor lady, who can't control the awkward stretching her arms and neck force her to do at inappropriate times, usually wears a thin nightgown no matter the hour.  Another woman - who must have early-onset dementia, since she's probably in her mid-50's - wears pajamas most of the time.  As long as residents are modestly covered, the staff of this facility, along with the residents' relatives, don't make much of a fuss about the time of day certain items of clothing are usually worn out in the "normal" world.

The staff does the laundry for all of the residents, and sometimes, clothing gets mixed up.  We'll find Dad wearing other peoples' shirts and pants, but he doesn't realize it.  I'm not even sure he realizes he wears a fresh change of clothes every day.  When he was at home, however, he'd get furious with Mom when she'd ask him to change out of the shirt and pair of pants he'd worn every day of the past week.

Among the residents, the concept of private property ownership is taken loosely anyway.  Residents commandeer wheelchairs and walkers whenever they need them, regardless of who actually owns them.

One lady has a fondness for Dad's four-footed cane, yet she doesn't know how to use it.  She'll wander around holding the cane horizontally in both of her hands, like she would a baton.  Maybe she was a cheerleader in her younger days.

Canes seem to be frowned upon in the Alzheimer care world, since they're inferior at preventing falls for users who aren't aware of their brain's inability to judge balance.  Dad is the only resident I've seen with any sort of cane.  Many ambulatory residents have fancy wheeled walkers, but Dad can't figure out how to use them.

I think we're expected to provide Dad a wheelchair for those times when he needs one, but so far, the residents trade out their equipment so freely, Dad's been able to get his occasional ride without any fuss.

Going Home

Unfortunately, Dad fusses about more serious things.  Like wanting to leave.  Just yesterday, as we arrived for our afternoon visit, we caught him at an emergency exit door near his room, having already tripped an alarm by trying to escape into a fenced side yard.  As two staffmembers came running to corral their charge, Mom and I herded Dad back to his room, with Dad mumbling crossly about all the fuss we were making.  "I was just reading the directions on the door," he fumed.

Sure enough, on every emergency exit, there are big signs required by city safety codes with detailed explanations about how the door works.  It's the ideal recipe for encouraging escapes:  take a bunch of people who don't understand why they're being kept confined, and mix in some doors with bold instructions about how to exit through them.

"Just because these people have Alzheimer's doesn't mean they can't read," an exasperated staffer once told me, as her co-workers were running off to yet another open-door alarm in the building.  The owners of the facility have tried reasoning with city officials to make the doors less straightforward for their residents, but to no avail.  As long as a resident can wait the 15 seconds the signs say it takes for the door to open - and the alarm to sound - they'll keep doing it.

Homeward Bound

Indeed, as diverse and individualized as each resident's case may be, they all share at least one common trait:  nobody wants to stay there.  Sure, not everybody gets to break out into the fenced side yards; many have degrees of dementia so debilitating that they can't figure out how to work the emergency doors.  Others are confined to wheelchairs.  Yet if they all could leave, I suspect they all would.

Where would they go?  It depends, of course.  But they may not want to go where you think they would.

When Dad still lived in his house, where he'd lived since 1978, he'd nevertheless be pining for "home."  We learned that "home" often meant one of two apartments in which he'd grown up in Brooklyn.  Alternatively, "home" also came to mean Heaven, since Dad's strong faith tells him that when he dies, he'll immediately be in the presence of Jesus Christ.  I've come to understand that for a dementia patient, "home" becomes anyplace where they'd be free of the prison that their dementia is building for them.  And in Dad's case, he still seems to know from decades of trusting in Christ that the only true freedom for which he can hope will come through his physical death.

Not that dementia patients have the capacity to strategize their own suicide.  We often say that only crazy people kill themselves, but dementia patients aren't crazy; their memory has simply short-circuited.  You'd think that, since all forms of dementia eventually lead to death, suicide might be a popular escape for dementia patients.  For those of us still in possession of our mental faculties - relatively speaking, of course - the act of suicide is at least something we can conceptualize, even if we'd never consider it for ourselves (read an exception to this rule here).  For dementia patients, however, suicide seems to be one of the many things about which they've completely forgotten about.

Except for our friend Shirley.  During that uncharacteristically gloomy day of hers, Shirley told me she wanted a pistol so she could shoot herself in the forehead.  Of course, Shirley is one of the most verbal and animated residents at this Alzheimer facility, so she's hardly representative of her fellow residents.  And Shirley's mood didn't last, either.  Sure enough, after a staffmember overheard her and calmly purred that "nobody's shooting themselves here today," Shirley let the idea slide.  At least for a while.

The longer I'm exposed to this place, the more I see how it's not just a job for the people who work here.

Although my Dad and his fellow residents are staying at a for-profit memory care facility, there's more to this side of the healthcare industry than simply money.  There's a whole philosophy about how sacred life is.

At least two residents at this facility are completely bed-ridden.  They can't move; their faces, arms, legs, and hands appear to have frozen into odd contortions.  I've never even seen one of these profoundly immobile residents blink their eyes.  Staffers must have to give her some medication to keep her eyes moist.  Each of these patients simply lays there, their mouths open or closed, their eyes not focused on anything.  Yet the staffers wheel them about the building on mobile beds, making sure they're included in the day's various activities, and otherwise treating them with respect, dignity, and purpose.

Indeed, life isn't over until it's over.  And while none of the lives being lived out in this Alzheimer's facility display cognitive attributes anybody would desire for themselves, there exists a persistent degree of reluctance to admit that the battle for life's sanctity is over.  Nobody seems willing to admit that these people have become so burdensome to society, so unnecessary, so impractical, and so unlovable, that their mortality should be terminated.

Statistically, the bitter reality is that an average stay at this facility is two relatively short years.  And those two years comprise the final two years of a patient's life.  Sure, companies make profits off of dementia, and the cynic could say that it's only when somebody can figure out how to make money out of an illness, that care is provided for the people who suffer from that illness.

Still, there is a remarkable difference between an empty room at this Alzheimer facility, and a room with even one Alzheimer patient in it, fast asleep, or so lost in the haze of dementia that they don't even know you're with them.

And that difference, of course, is life.

It's not just a cliché.  In our performance-oriented society, dementia's victims may appear to be anachronistic.  Something far less than productive, or worthwhile.  Nevertheless, dementia's victims still possess a quality worthy of our respect:  life itself.

Meet Shirley, in the Red Sweater

We met her coming in the front door.

We were coming in, and she was going out.  Or, at least, she wanted to be going out.

Mom and I were visiting Dad at his new Alzheimer facility, and we'd just opened the front door, for which a security code is required.  Entering the facility's airy lobby, we immediately encountered an elderly yet sprightly woman wearing a red cardigan.  Mom and I hadn't even closed the door when she began to speak.

"My husband has gone out to get the car, so before you close the door, please let me go wait for him," the red-sweatered woman requested.

She looked normal enough to me.  The sweater, her crisply-tailored slacks, her curly hair done just so, her pink nail polish and makeup properly applied; Dad had only been at this Alzheimer place a day, yet I'd already realized that just about everybody living there displays an appearance varying from modestly disheveled to unnervingly bizarre.  This woman, however, looked fine and healthy, and she spoke without the slightest hint of deceit.

Mom, nevertheless, wasn't convinced.  "I think we need to shut the door," she whispered.  So I did.

A few moments later, we met a staffmember of the facility at the other end of the lobby.

"So; you've met Shirley?" he grinned.*

Apparently, Shirley stations herself by the front door most days, and spends her time sizing up the people coming in and going out, trying to figure out who she might be able to bluff into letting her out.  "She thinks she runs the place," another staffmember joked to us, since even when she's not at her usual post by the front door, she takes upon herself the role of mother hen for her fellow residents who are far less socially proficient.

One morning, while strolling the quiet hallways searching for Dad, Mom and I met a female resident wearing a Maine t-shirt.  She was walking the halls with her husband, who is not an Alzheimer patient.  Mom grew up in Maine, and we learned that this resident also came from Maine.  Immediately, they began chatting about the towns, lakes, and regions of their childhood memories. 

Shirley happened to be around the corner; out of our sight, but not out of earshot.  Apparently, Shirley heard people talking about land and property, and she couldn't help herself:  She burst around the corner, interrupting the conversation with offers to sell her farm to whomever wanted to buy it.

Mom, this other resident, and her husband were confused.

But I burst out laughing.

I already knew a lot about Shirley's farm.  On an earlier visit, when Dad was resting in his wheelchair in the lobby, Shirley had given up her post near the front door and come over to chat with us.  Of course, having lived with a dementia patient for seven years myself, I've gotten used to filtering everything they say with skepticism, since their version of reality and history can be unintentionally distorted.  Nevertheless, Shirley was convincing in her tale of once owning a large farm, parts of which flanked both sides of a country road.  After her husband passed away, Shirley had sold the part of the farm on the other side of the road, even though the house on that piece of land was newer and modern.

"I liked the older, bigger house," Shirley explained, referring to the farmstead's original domicile, "even though I didn't need all that space.  Besides, that part of the farm was blackland, which is real good for crops.  I wanted to keep the blackland."

Made sense to me.

"Did you see my car outside?" Shirley anxiously inquired, instantly switching the subject.  "I have that brand-new Cadillac, but nobody ever drives it!  I've got that Cadillac just sitting out there!  It's still there, isn't it?"

I hadn't seen a Cadillac in the small parking lot out front, but neither did I see any harm in playing along.  "Nobody's moved it," I assured her.

"That's good," sighed a relieved Shirley.  "I've got two daughters, but they hardly ever come to see me.  Everybody's so busy nowadays. I hate having that Cadillac just sit out there with nobody driving it."

Late yesterday afternoon, Mom and I had just come through the front door into the lobby.  Our red-sweater friend had been taking another breather from her place near the door, standing instead across the room near the fireplace, and when she saw us, she came across the lobby.  At first, I thought she was going to greet us, but she walked right by us, without acknowledging us.

"My girls are coming to see me!" Shirley happily announced to nobody in particular.  "I see my girls!"

And sure enough, right behind us came a middle-aged woman and a man who was apparently her husband.  Shirley greeted the woman affectionately, but barely acknowledged the man.  By the way both the woman and man acted, Shirley's daughter and son-in-law were no infrequent strangers to the facility.  With dementia patients, however, the discouragingly short duration of their attention span denies them the comfort of knowing that loved ones are with them more often than they remember.

Dad's been at this facility for a little less than a month, and so far, Shirley is the only other resident who regularly talks with us.  Several residents are ambulatory, or can navigate their own wheelchairs, so they're moving about the facility every time we've been there, and the place is by no means deserted.  Still, the atmosphere, hijacked as it's been by Alzheimer's, is decidedly unique.

I've never before been around so many people whose brains are literally closing them off from interpersonal communication and interaction.  This facility has programs and activities that try to get its residents to participate in things together, like meals, sing-alongs, and question-and-answer sessions where residents call out words that begin with certain letters of the alphabet.  Yet only a couple of women ever verbalize their answers during the quizzes, and the sing-alongs are mostly muted mumbles by - again - just a couple of the ladies, in a room of maybe a dozen people.  And mealtimes?  From what I've seen so far, they're eerily quiet, too.

Today at lunch, for example, there was an elderly man slouched in a wheelchair alongside a dining table demanding "where's the food!" like that lady on the old "Where's the Beef?" commercials.  But otherwise, everybody was sitting quietly, and still; their faces displaying the trademark blankness of dementia.

At first, you'd be tempted to appreciate such model patience, but it didn't seem to be that they were being patient.  Being patient implies that one is exercising a certain measure of grace and tolerance while somebody else gets their act together.  No, with the exception of the one rowdy gentleman, these residents had some sort of mental button that had been set to "pause" while staffers bustled about them.

Patience is a virtue.  Blankness is simply sad.

Indeed, it's not just because of her ubiquitous red sweater that, within this sheltered tableau of crushing social dysfunction, Shirley stands out.  And to me, at least, she provides some much-appreciated relief.

Even if she herself cannot disguise her own struggles with dementia.

"I'm going to visit my mother this afternoon," she cheerfully told Mom and me the other morning.  "She's 400 years old!"

"Four hundred years old?" Mom exclaimed.

"No - she's four hundred and ten," Shirley corrected herself, as if at Mom's prompting.  "Yes - 410!  Shame on me for not remembering my own mother's age!"

"Wow," I marveled, "She's sure lived a long time, hasn't she?"

"Yes!" Shirley replied, beaming with pride in her mother's longevity.  "She's got a lot of get-up-and-go in her.  And so do I!"

And with that, Shirley grinned broadly, with a twinkle in her eye, raising a well-manicured fist into the air, like she was charging off to battle.

If only she could slay the enemy that is destroying her brain.
_____

* "Shirley" is not her real name.

Longing for Yesteryear

When was your yesteryear?

Was it several years ago, when your children were younger?  Was it a couple of decades ago, when you graduated college, or got married?  Was it half a century ago, when the world seemed to be a far simpler place?

My yesteryear was two months ago, back when my father's dementia was merely stressful.  My yesteryear is the beginning of November, when Dad could still recognize me as his eldest son.

Before he began accusing me of being evil.  Of being Satan.

My yesteryear is even before he began to believe I was going to kill him.

Starting on Thursday evening, and every night since then, Dad has prayed out loud to God for peace as he prepared for me to murder him.  Every evening, in what is called "sundowning" (the process in which dementia patients react in disturbing ways to nightfall), Dad now lives in profound fear.  Fear of Mom, fear of me, and fear of what he thinks we're going to do to him.

He shakes in agony, his voice cracks, he sobs without tears.  He whispers disbelief at how his life is about to be stolen from him.  He prays to God defiantly so I can hear that however I kill him, as he truly expects, I'll know I can't kill his spirit.

You don't see any of this on the Alzheimer websites.  You see lots of information about walking with Alzheimer patients through their earliest memories, but there's nothing about how to handle a loved one who believes you're about to murder them in cold blood.

My yesteryear is the time - about three weeks ago - before Mom began getting so afraid of Dad, and what he might do to himself and us, that she began calling 911.  She's called them three times now, and each time, the police come out and quietly try to diffuse our situation.  The first two times, it worked:  Dad calmed down and his fears subsided.  Saturday night, however, he began arguing with the cops, and I finally encouraged them to leave, since no progress was being made.

Yesterday afternoon, we experienced the earliest onset of Dad's sundowning, with the questions and fear beginning at about 5:00.  He'd scowl at Mom, asking for her identity.  He'd glare at me, disbelieving anything I told him.  I found one of his CDs of hymn music and played it, watching his face sink into his hands, as if in prayer.  Mom and I looked at each other, smiling to see him asking God for peace in the midst of his confusion.

Then he raised his head and looked defiantly at both of us.  He declared that he was ready for whatever harm we were about to inflict upon him.  We then realized he'd been praying for the faith and courage to face his imminent death.

Mom choked back tears.

I silently chided myself for being so gullible as to hope a simple thing like playing soothing music could intercept his worsening dementia.

My yesteryear was when Dad merely forgot that his sister no longer lives in Brooklyn, where they had grown up.  Every time they spoke on the phone, Dad would ask her three or four times where she lived, since the experiences she told him about her day had nothing to do with the old neighborhood.  Last night, for the first time, he angrily told her she was lying to him, and tried to hang up the phone.  Mom grabbed the receiver from him and commiserated with my aunt over what had just happened.  Dad had turned on his own sister, the last person alive who can relate to their family's childhood experiences.

My yesteryear was an almost unbelievable one or two inches ago, back around the beginning of November, when I couldn't wear several old, old pairs of denim jeans.  I fit comfortably into them now, thanks to all the weight I've suddenly lost.  Because of my constant anxiety, my appetite has shriveled up, and so has my waistline.  I'm still hungry, but I can barely brace myself for whatever new hell we're going to face each evening with Dad's condition.

My yesteryear was when Dad refused to go to church because he didn't want anybody to see that he needed to use a cane.  On Sunday mornings, after breakfast and before the time he and Mom usually left for their church, he'd feign an illness, such as being too tired or dizzy.  But then, as soon as I announced that Mom had left for church alone, suddenly he was chipper and professing that he felt fine.

My yesteryear was when Dad fought with Mom and me for trying to help him take a shower safely.  It could take half an hour to coax him into the bathroom to take a 5-minute shower.  And those strategically-placed handrails Mom paid some contractor a ridiculous amount of money to install in their bathroom?  He would disdainfully use them only after I'd repeatedly remind him of their obvious presence.

My yesteryear was back when Dad didn't fear me as his potential killer; he merely considered me the bad guy in our household; the person upon whom most of his anger was directed.  Mom and I had learned that because of the confusion and anxiety dementia patients experience, they tend to direct their resulting anger towards one of their caregivers.  Usually, that unfortunate target of their anger is their spouse.  Yet in our case, since I'm living at home with them, as the overweight, underemployed son, I caught most of Dad's vitriol.  And that was okay, since it usually spared Mom from even higher levels of stress.

But those days appear to be over, and long gone.  When sundowning begins, both Mom and I are equal-opportunity targets for his scorn, vitriol, and outright ugliness.  Some experts say we should nurture Dad's childhood memories and walk through his version of reality with him, validating his humanity despite his confusion.  Unfortunately for us, however, Dad's childhood was irreparably scarred by an alcoholic father.  There is little in his earliest memories that is good.  Years ago, during one of his extremely infrequent mentions of his father, Dad told us that the day he came home from work to find his father dead in their apartment's foyer, there was such profound relief in his family, it took a while before anybody figured they should call somebody to remove the body.

Fortunately for us, there's an elder at Mom and Dad's church who has willingly come over on each of these past few nights and helped to calm Dad down.  This elder, Ron, has a remarkable knack for chatting through topics to find nuggets of relevance that can engage the person with whom he's talking.  With Dad, his only really good childhood memories involve watching Dodgers baseball games at Ebbets Field, and Ron, having grown up as an improbable Dodgers fan himself, despite being raised in rural Texas, can talk to him about the old players.

In my yesteryear, Mom once had me research and print off some information on the old Dodgers and their legendary players, but Dad read just a couple of sentences of it and then filed it someplace.  We haven't seen it since.

Ron is an engineer.  He was also military pilot, and has worked in several different industries, so he's accrued a broad and diverse history from which he can draw stories and anecdotes that touch on Dad's history in the military and employment in the concrete construction business.  Meanwhile, the life histories Mom and I each have are inextricably tied into Dad's.  And since he doesn't know who we are, he doesn't trust us when we talk - especially about experiences it's apparent he should remember along with us.  Mom and I try to talk with Dad like Ron does, but invariably, Dad becomes suspicious, and before long, he's denying what we're saying, and getting agitated.  I suspect that Mom and I are too close to him, even though he can't remember why we're close.  People like Ron are removed from his life just far enough so that there's a certain casualness to their relationship.

Chalk it up to one of the difficult ironies of dementia.  Dad would cheerfully chat away with telemarketers and willingly offer up his credit card information if we let him.  Yet he's fearful of us.  He convinces himself I'm going to murder him, yet he'd shuffle out the front door, off to who knows where in the black of night, if we'd let him.  He enthusiastically welcomes Ron into his reality, but he bitterly accuses Mom and me of holding him hostage.

In my yesteryear, I wasn't a hostage-holder.  I wasn't Satan.  I wasn't about to murder my precious Dad.

I want my yesteryear back, and everything it stood for.

In God's holy providence, however, even today's misery will soon become a yesteryear for which I'll likely pine as we descend ever lower into this netherworld called Alzheimer's.
_____

Update - Sure enough; it's 4:09pm on Monday, and Mom and are getting ready to take Dad to the hospital, where his neurologist has arranged for him to be admitted before his inevitable placement into a nursing home.  As you might imagine, this is very hard.  Very.  Hard.