agitation

THE GIFT OF GAB — ALL THROUGH THE NIGHT

Ken was always a talker and so at ease with people.  When we met that was the first thing I liked about him.  Had he been Irish I would have guessed he kissed the Blarney Stone, but he wasn’t and so he didn’t  Ken was just blessed with the gift of gab. During our marriage I sometimes wondered if he really liked people or if he liked them because they listened?  I doubt he ever analyzed himself, and even if he did what would that prove?  Possibly that he liked to talk and he also liked people; making the question and answer come to a full circle.

For years he volunteered his spare time serving as cub master, scout master, Little League coach, manager, League president, Sunday school teacher, and the list goes on.  During that time Ken was the middle-aged man working with youth and loving every minute.  How gratifying it was to see the boys, eagerness filling their young faces asking, “Mr. Romick, did you me catch that ball?”  And to see 8-and-9-year-old Cub Scouts saluting and grinning from ear to ear as they not only received an award, but words of praise as well. Whether they were eight or 18 Ken always had some special compliment for “his” boys.

It was years later when someone called out from across the street or the mall, “Hey, Mr. Romick, how ya doing?” that we realized how quickly time had passed. Looking into the unfamiliar face of an obvious acquaintance, these typical middle-aged men with receding hairlines and mid-sections telling they were well fed and cared for, were Ken’s “boys.”  We were always amazed to acknowledge that the “boys” had grown up while we were growing older.   Meeting them once again, and watching as they grabbed Ken’s hand shaking it vigorously, I became aware of the great affection these men still had for my husband.  “It’s me, Mr. Romick, Steve from Little League,” or it could be Mark from scouts or Aaron from his old Sunday School class; all of them genuinely happy to once again meet this “mentor” from the past.

I doubt Ken ever thought of himself as anyone’s mentor.  It wasn’t just about what he did, but more who he was and what he said.  How it touches my heart even now when one of his former “boys” tells me how much Ken had impacted their life, how he had made them feel they were “somebody,” and they could do anything, meet life’s challenges and reach their best potential because Mr. Romick had faith in them and said he knew they could do it.  To many, his words were a gift.

Alzheimer’s eventually robs its victims of just about everything they ever had or held dear.  Communication with Alzheimer’s patients varies, and even conversation with the same patient differs from day to day and from night to night.

In his recent book, “Adventures Of An Incurable Optimist – Always Looking Up,” Michael J. Fox tells about his sleeping experience.   Apparently, with his Parkinson’s the tremors stop when the brain is at rest.  When I heard him speak of this during an interview, I thought about the differences with Ken when he had been asleep for a time.  

I have no doubt that the disease saps energy.  For several years, Ken went to bed well before I did (except when he is extremely agitated or disturbed).  Once he was settled I knew it was my turn to get settled.  No matter what his mood swing might have been just before bedtime, or whether he knew me or not, when I climbed into bed he turned to me, barely opening his eyes and lovingly asked, “Is that you dear?”  I assured him it was me and he followed up with something like, “I love you.  Goodnight.”  For those moments he was Ken, and in retrospect, I can’t help but wonder if his resting brain, like Michael’s resting brain, might permit the tangles to relax enough for a bit of normalcy to return allowing stored and familiar memories to emerge.   As a lay person, all I can do is observe and speculate.  For me, his asking questions during those small snippets of time, and accepting the appropriate answers were good, but brief, conversations.

However, with Alzheimer’s change is constant.  After several months, I found I was no longer able to “settle in.”  Even though he still asked, “Is that you dear?” falling back into slumber within a few minutes, I learned very quickly there was more to come.  Peace and tranquility prevailed until one night our comfortable routine developed a glitch.  Ken began talking in his sleep just about the time I was dozing off.  While it didn’t occur every night, it happened often enough to sabotage a good night’s sleep.

The interesting thing about him talking in his sleep was the articulation and sentence construction, which were clear and concise; actually better than some of what we were able to experience during the day.  I sat up in bed and listened.  At first I chuckled to myself, remembering how much he loved to talk.  So here he was deep in sleep having great conversations.  Ken would make a statement, pose a question, or wait for an answer. The timing was so on target I almost expected to hear another voice.  No doubt he was dreaming, and the person in his dream furnished the other half of the dialogue.  Because of the clarity I couldn’t help but think once again about the possibility of his resting brain allowing him to even laugh during his unlabored middle-of-the-night chats.

 Nevertheless, these outbursts of talking did nothing for my period of sleep and rest.   “Shhhh,” I would whisper.”  His talking continued.  “Be quiet,” I requested, my voice becoming louder.  “Buddy, stop talking,” I commanded in the voice of his mother.  “You stop talking,” he countered.  I tried the voice of a teacher calling him Ken, Bud, Buddy, Kenneth and Hey You, all to no avail.  He always had an answer, and the answer told me he was not going to stop talking.

As the filibuster continued, I picked up my pillow, closed the bedroom door and retired to the couch in the family room, which I didn’t mind.  The couch, a warm blanket and I had been friends for a long time dating back to hot flashes and sudden awakenings of years gone by.  The silence was golden as I adjusted the pillow, snuggled into my blanket, and smiled as I thought of the noisy convention in the bedroom.

Perhaps, I mused, Ken may have managed to play a trick on the devil disease by skirting around the pitfalls of daytime consciousness, taking refuge either in the subconscious or somewhere in his resting, relaxed brain.  I don’t have any answers, but wherever he might be during those happy hours of nocturnal conversations he’s in his best element.

Originally posted 2010-09-05 06:09:56.

WINDOWS TO THE SOUL

Was it Cicero, a Roman statesman, Matthew in the New Testament, Shakespeare or that wonderful poet anonymous who said, “The eyes are the windows to the soul?”  It doesn’t matter who said it, nor does it really matter that each quote is a little different.  They all say the same thing, and each is so true: the eyes are definitely the windows to our heart, our soul and often a glimpse into who we are.

Our eyes have many gestures, if gesture is the right word to use in reference to eyes.  Or do they have a language of their own?  They sparkle, flirt, look bewildered, shocked, frightened, askance, and we mustn’t forget the eye roll, accomplished best by teens.  Of course the list is almost endless.  Interrogators watch the eyes for guilt, hidden answers, avoidance or any other clues which might lead to solving a  mystery.  Psychologists search deeply through the windows seeking answers into the troubles and mental health of a patient, and parents learn early on that the puzzling situations of family life are often solved by looking a child straight in the eyes and asking the leading question.

“Who’s been eating the Easter candy?” my mother asked glancing at my two older sisters and me.  “It wasn’t me,” they both cried in unison.  “I didn’t eat any,” I answered, the guilt building.  I was 9 and thought my pure statement would get me through.  However, my mother-turned-detective was relentless.  “Look at me,” she commanded, the word guilty no doubt flashing across my eyes like blinking lights on a theater marquee.  “Tell me the truth.”  There I was – caught with my hand in the cookie jar – or rather in a candy bag — with nothing left but confession.

Better at eye reading than all the professionals in the world are parents, especially mothers, and I learned from the master.  “Have you been smoking?” I demanded from one of my barley teen children, the barely-teen scrubbing the teeth in the middle of the afternoon while the clothes reeked of tobacco.  Even without the smell, brushing of teeth without a reminder was out of order and a bit suspicious.  Barely-teen mumbled through the tooth paste, “I dod ‘moke,” and while the reeking was helpful, the eyes told the truth, followed, finally, by the guilty voice admitting puffing one or two — but never inhaling.

“Where did you go this afternoon instead of classes?” I asked another of my teenagers. Eye puzzlement was a dead giveaway, even though the guilt was on his smile.  He didn’t care that he was caught, but marveled at my detective work and network of spies.

And when they were younger, it was their eyes telling of sickness before they spoke.  “Mommy, I don’t feel good,” mumbled Debbie, my six-year-old.  “I know Sweetheart,” I replied holding my palm against her forehead.  “I can see it in your eyes.”  “Are my eyes sick too?” she had asked.  Many people look a little glassy eyed when they are sick, but Debbie possessed the sickest eyes of anyone I knew; sparkling and deep brown in color during well times, but with illness they turned into dull, hazy marbles.

As parents we observe a troubled marriage and see pain in the sad eyes of our adult children.  We so want to share their burden, but wisely allow what is not working to end in its own natural way so they can pick up the pieces and begin anew.  Hopefully,  happiness will come again, and we will know without words of its arrival because of gleaming eyes telling of love’s return.

So as parents, wives, husbands, friends and relatives we look past what’s up front to peer inside of another’s soul or heart when there is a need; not to intrude, but to help, guide and comfort.

I have noticed with Alzheimer’s the eyes often reflect different messages:  With Rose and Nick (Ken’s parents), their eyes became vacant as the disease neared its end.  It was if no one lived inside.  Yet, my mother’s eyes danced with the wonderment of a little girl during her journey through Alzheimer’s, and flamed with excitement at  being offered ice cream in the middle of the night.  I don’t ever remember her soft blue eyes looking as if she were no longer there.

“My mother’s eyes have that vacant look,” said Marvalee, as we talked about Eva during the music-filled afternoon we all enjoyed.  “That’s something new,” I answered.  “When Ken and I saw her in January her eyes were still bright, still showing some life, some bit of recognition.”   Now that was gone.  Are the eyes saying that Eva doesn’t live there anymore?  When we can no longer find expression and answers through the eyes, when the windows to the soul become closed, what does that say? 

Often I look into Ken’s eyes, and they still tell me a lot.  Some days they appear dull, and during the dull look I find him more combative, more uncooperative than when they are bright.  Those moments when he remembers me I even see a sparkle coming from deep inside his heart.  He seems relaxed and softens as I sit with him on the couch holding his hand.  Most of the time, however, I see a jumble of ever-changing expressions and emotions:  anger, despair, bewilderment, fury, fear, seething, frustration, confusion, recognition, ridicule, revenge, hostility, and every so often love.

Yes, no matter where we are in life, our eyes are the windows to our soul, our heart, and our health.  Fortunately, or unfortunately, we learn to read one another like the best of books.  For me it’s been a priceless gift.

Originally posted 2010-08-16 07:16:34.

THIS’LL EITHER CURE YA, OR KILL YA, OR….

Remember the old black and white movies where the kindly pharmacist of long, long ago worked in his small cubicle mixing a concoction of whatever he kept in his vast assortment of apothecary jars?  Finishing the magic potion he placed the medicine in a small paper sack, slid it across the counter to the ailing customer with whom he had been acquainted since the man was a lad, and quipped.  “Here you go, Sonny.  This’ll either cure ya, or kill ya.”

Today’s multi-purpose pharmacies would go unrecognized if compared to the simple corner Drug Stores of old, small and uncluttered by racks of groceries, sweat shirts and motor oil.   Yesteryear’s Drug Stores sold drugs, with the possibility of also having the best soda fountain in town manned by an adorable soda jerk whose voice changed with every scoop of ice cream.  The modern, ultra-streamlined facilities of now often feature a half-dozen, or more, pharmacists scurrying back and forth filling your doctor’s prescriptions from bins, bottles and jars of pre-mixed pills, capsules and elixirs manufactured by America’s leading pharmaceutical companies, all of which have it down to a (excuse the pun) science.  Ideally, the connecting link between old and new remains as it did anciently: to cure, to help and to render relief for the suffering (but first do no harm) just as today’s medical people want to do likewise in making whatever ails us better, or at least manageable, including Alzheimer’s.

With many HMOs having their own pharmacy and other pharmacies being part of vast chain stores, the personal relationship between druggist and patient has nearly slipped into the past.  No longer having that special connection, I doubt any professional would quip to a departing customer, “this’ll either cure ya, or kill ya.”  However, due to a recent experience I had with Ken’s medication, I would update that old jibe and post the revised axiom under the word PHARMACY which would read, “This’ll either cure ya, or kill ya, or make you crazy.”

About 18 months ago I noticed Ken was developing a streak of agitation, touched with a bit of meanness and a small boy’s stubbornness when asked to  coöperate with me.  I made an appointment with the neurologist and mentioned to him that I was already giving him two over-the-counter sleep aids (Tylenol PM to be exact) which was making bedtime one of the more pleasant occurrences of the day.  “That’s fine,” he commented.  “For the agitation, let’s give him Seroquel, which should have a calming effect on him.  Give Ken 1/2 of the pill in the morning and the other half in the evening so the medicine level is constant, and continue with the two Tylenol PM at bedtime.”

For a long while the agitation all but disappeared.  Recently, however, it returned coupled with anger beyond belief, and his refusal to go to bed.  Suddenly he seemed energized by the evening medications instead of being calmed.  He wandered the house rummaging through drawers, cabinets and closets moving household supplies and objects (some to parts unknown) and wouldn’t settle down until somewhere between 3:00 and 5:00 in the morning, sleeping most of the day.

After three days I called the neurologist and spoke with his social worker who keeps the patient’s histories.  I told her that I had already stopped the Seroquel after reading on the internet that it wasn’t recommended for Alzheimer’s patients.  She further advised me that long-term use of any over-the counter sleep-aid may eventually cause psychotic behavior.

That evening Ken and I sat on the couch watching TV.  Never following anything too closely, even the Olympics, he was wonderfully relaxed.  I had given him no medications.  Much to my surprise, a little after 10:00 p.m., he said, “I think I’ll go to bed.”  Still in his night wear after sleeping most of the day, I was surprised when, with just a little guidance, he went to bed and slept the night through.  So did I — oh happy day.  No — oh happy night.

My point here is to emphasize that we — everyone — should pay more attention to what the medical experts have told us for years:  we need to take more responsibility in managing our health care and that of our loved ones.  Even though Seroquel helped for a while, I should have researched it more thoroughly at the beginning, and any o.t.c. sleep aid as well.  (The information supplied on the latter product is not enough, and the print is much too tiny.  However, through a magnifying glass I did read the instructions suggesting if taking the product longer than two weeks advice from a physician should be sought, which I did.)

Remember, just because it’s an o.t.c. remedy doesn’t mean it’s harmless.  Had I been privy to the possible adverse side effects early on, even though the medications worked for a time, I would have been able to consult with the doctor in weaning Ken from both treatments at the first sign of trouble and not suddenly stopping as I did.

I hold no animosity toward the neurologist in his prescribing a drug not recommended for Alzheimer’s.  (We have an appointment next week.)   In his practice I am certain that he has prescribed Seroquel to many other AD patients, and in some cases found it  more successful — all the while keeping a study of the results because every patient is different — as he will probably do with Ken’s reaction.  I’m all for doing studies, that’s how we learn, especially regarding such uncharted waters as the brain with its many dreadful diseases.

Furthermore, it is my opinion, and has been since Ken’s diagnosis, that the few FDA-approved medications presently on the market for AD treatment are little more than continuations of clinical trials.  Unfortunately, I also realize that with so few ways of treating this terrible disease what’s out there is the best the medical community and pharmaceutical companies have to offer.  As a caregiver I feel desperate to find something that will make a difference, perhaps research doctors feel the same frustration as they hunt for a cure, or at least a significant medical management for the disease.

Consequently, it is the same frustration which propels us — doctors and caregivers — to continue groping through the possibilities hoping to find help.  Personally, I will try just about anything if it offers even a glimmer of hope in helping my husband.  However, in the future I will be more involved, ask more questions and do more homework when giving Ken new medication.   Meanwhile, remembering the ancient axiom I take consolation in doubting that whatever medication suggested will kill him, most likely it won’t cure him either, but I can do without psychotic.

Originally posted 2010-02-15 07:42:32.

NIGHTMARES

“Help, help!  It’s the wolf.”  It was the middle of the night and I leaped from my bed and ran into the bedroom of our little girls.  Snapping on the light to let Debbie, our six-year-old, know that I was there to chase away the fear and to hold her close so she would understand that everything was all right. Patting her small back as she clung to me I couldn’t help but smile a guilty smile at my unwise decision to read “Little Red Riding Hood” as a bedtime story.  It was one of her favorites as was “The Three Little Pigs” who also had issues with a big bad wolf.  “Please, please,” she had coaxed handing me the tattered little book, “please read ‘Little Red Riding Hood.'”  So I relented and read the scary story before turning off the lights.

Harmless fairy tales when the sun shines, but the wolf proved a bit more menacing in the darkness of her room.   A hug and a few kisses and reassurance that it was just a bad dream; that the story was only a fairy tale and there was no wolf in her room soothed my frightened little girl.  Finally, comforted and content she snuggled down in her bed and went back to sleep.  The worrisome wolf with the big teeth “the better to eat you with,” was gone.  Such is the stuff of which bad dreams are made when you are six.

For me, the villain of my first remembered childhood nightmare has vanished, but not the terror I recall as I struggled to free myself from the grip of that frightening dream.  My older sisters had been telling ghost stories to one another and I listened wide-eyed and trembling as an eight-year-old, not wanting to hear what they were saying, yet glued to the edge of the bed as they expanded the gory details of their tale, no doubt giggling inside at their gullible little sister.

Finally awakening from the horror, the real world didn’t feel any better than the nightmare.   Wide awake I was somewhat relieved, but in the blackness of my room, the misty experience lingered, and behind every shadow I imagined some lurking “thing” which could leap out and harm me — or worse.   I buried my head under the covers and closed my eyes ever so tightly, wanting to call out to my mother, but too frightened to make even a sound.  Somehow I must have fallen asleep because the next thing I remembered the room was filled with sunlight washing away shadows and hidden ghosts — and the best part  — I was still alive.  Such is the stuff of which bad dreams are made when you are eight.

Everyone has bad dreams and nightmares for any number of reasons.  My last run of recalled mid-night unpleasantness came about because of a new prescription for high blood pressure.  They were, once again, nightmares with me as the intended victim of any number of horrible characters cloaked in black capes and hoods, demons and even an assassin where I ran and ran and ran with “it” or him close behind wielding a dagger to do the dastardly deed.  The attempt to escape from those dreams was nearly more difficult than escaping from my imagined tormentors.  The dreams finally stopped when the doctor changed the medication.   Such is the stuff of which bad dreams are made when you are a grown up.

But suppose there was a nightmare from which the victim could not awaken?   As Alzheimer’s continues to claim the mind of my husband, I often see him frightened and agitated, and I believe it’s partly fear which, at times, makes him disagreeable, uncooperative, angry, combative and downright mean.  When I see him drop into his agitated mood my heart sinks.  This particular mood, which seems a “must” occurs at least once a day, usually taking place anytime from late afternoon throughout the entire evening, and well into the night and even the wee small hours of the morning, or it can last a comparatively short period.

Introducing that mood, he seems to “mark time” barely lifting one foot then the other from the floor — kind of like a little boy who has to go to the bathroom.   This mood — this personality — this action —  this — whatever it is I dread the most.  Communication with him is at his choice, shutting me out and any of my efforts to reach him.  If he does speak to me his words are insulating or degrading.  Somewhere inside his body there appears to be a mountain of pent-up energy which requires disbursement.  At times he can be subdued with the aid of a tranquilizer* and two or three Tylenol PM tablets* in the evening.  Other times he overrides the medication and cannot be subdued.  I confine his agitation activity to the living/dining room, the hall, bathroom and our bedroom.  Every other room is off-limits to him:  locked.  I lock them not to be mean, but to keep some kind of order in the house and to make life a little easier for me.  He doesn’t need to ransack everything in every room.  During part of these moods he becomes obsessive-compulsive and spends that time rearranging whatever he touches with ritualistic exactness.   It does no good to correct him, to suggest anything to him, or to make an effort to redirect his interest elsewhere.  For most of this time he remains alone  in his nightmare world obsessing and searching endlessly for his elusive home.

I imagine him like a robot where the control panel is out of commission allowing any of the robot’s still-functioning electronics to misfire sending nothing but broken signals of confusion (much like Ken’s diseased brain).  With Ken, the misfiring sparks a jumble of emotions: love, hate, abandonment, suspicion, loss and fear, and it seems as if fear and loss are paramount.  It’s no wonder he’s frightened as he looks around in his own home where we have lived together for more than a half century and recognizes nothing.  And me?  Surrounded by confusion, he sees me as an enemy and is, understandably, even more fearful and defensive.  I am a stranger in his midst and although I am a woman — his wife — he is still afraid of me.  By watching him, I can tell when he feels threatened and as his anger peaks toward rage I know he can become combative.  Until he is able to calm himself I often walk away, locking our bedroom door, which leaves him totally alone until the agitation subsides and the anger dissolves.   It’s during these wild episodes when I think of him as experiencing the most terrible of bad dreams:  ones where no mother can give him comfort, no sun-drenched room chases away the ghosts, and no doctor can write a new prescription.  Ken’s life is held captive in a terrifying dream-like world with no way to escape and no way to wake up from this awful torment.  Such is the stuff of which nightmares are made when you are a victim of Alzheimer’s disease.

*See Blog titled “This’ll either cure ya, or kill ya, or….

Originally posted 2010-02-07 09:41:39.

ALZHEIMER’S AND A MELTDOWN

baby possum

Even a tiny possum can cause a big meltdown.

The wicked witch in the Wizard of Oz had a meltdown.  One splash of water and she was gone like my grandmother’s spit on a hot iron. Now that’s what I call a meltdown.  No, I haven’t had anything like that and I don’t mean to poke fun at an extremely serious medical condition. Perhaps I’ve wanted to collapse a few times and let them take me away. If only there had been more time, and I needed the respite.  But the days are always lacking in enough hours to get the necessities done and over.  Having a meltdown is not nor has it ever been on my to-do list. Continue reading

Originally posted 2013-10-20 04:55:06.

FALLING DOWN AND GETTING UP….

Ken fell the other night about an hour after Ben left, and it’s not the first time.  I have the evening/night shift, and usually it goes very well, but Alzheimer’s and its ramifications are most always unpredictable.

We had been watching TV and I went into the kitchen (not 12’ feet away, but around a snack bar and out of sight) to prepare a light dinner.  I looked back in a few minutes to where we had been sitting on the couch and he was on the floor.  He didn’t cry out or make any noise as he fell, nor did he appear to be hurt.  I asked him if he was all right.  Growling at me, he intimated it was my fault, but then everything is my fault.  I encouraged him to turn around and get up on his knees.  If he could do that I could help him get back onto the couch.  After making several attempts he was still in the same position on the floor with him becoming exceedingly agitated.

Knowing Ken wasn’t going anywhere, I stepped out to the front porch surveying the nearby houses to see which of the men might be at home.  Three houses down and across the street I could see Robert working in the garage.  “Sure,” he said, “I’ll be glad to help you with Ken.”

Entering the family room with Robert we found Ken sitting back on the couch.  “I have no idea how he got himself up,” I explained to my neighbor, “but he’s fine.  Thank you so much.”  Robert went back to his work and I continued with dinner.

The fact is evident: older people often fall, and people with AD often fall, which Ken has done many times.  But the full fact is that just about everyone has taken a tumble or two – or more – over their lifetime, and, usually, it’s no one’s fault no matter what the age.

I recently read an article written by a Minnesota journalist regarding the number of deaths from falling in various care facilities throughout that state.  The article was republished on the “Alzheimer’s Reading Room” blog. There were various comments below with many contributors “blaming” the inadequate care, the inadequate number of employees, and the incompetence of care facilities in general.  In my humble opinion, those kinds of all-encompassing comments are unfair.

While I have my own 20-year-old horror stories about care facilities with this one topping my list:  We found my AD mother, restrained in a chair with a fitted Snap-On lunch tray holding her in place.  Her sweaty face had turned a deep red as she sobbed tears of desperation while sitting in her own waste.  We calculated she had been ignored for at least four hours on Christmas Day while the staff partied; a perfect example of blatant neglect.  However, I don’t believe that every incident, accident or fall means total disregard of a patient, or that every care facility is filled with incompetent and uncaring workers.

Nor do I believe that the aged or infirmed, once they reach that point of no return, have much of a choice regarding their physical condition.  Obviously, aging, in and of itself, is a journey of deterioration.  I do believe, though, that many older citizens, who are otherwise free from illness, can engage themselves in some kind of preventative action.

We are all aware that as both men and women grow older, they are less active and less likely to be involved in an exercise regimen where they can improve muscle quality and practice balance movements; thus preparing for what might come down the line at a later date.  Dedication to such a practice is known to also improve bone density, which can help in many health areas including the possibility of osteoporosis prevention.

Before my mother succumbed to AD, she tripped over the spread while making up the bed.  The unexpected fall broke her hip.  Following hip replacement, she breezed through therapy at 80, and then devoted herself to an exercise program which not only strengthened the muscles around the artificial hip, but greatly improved her general wellbeing – and balance.

On the other hand my father, a tall man with large bones, surrendered to painfully arthritic knees.  Laxed in thigh and leg strength exercises, his legs could not compensate when, without warning, a knee would buckle resulting in numerous falls.  For days afterward he complained that he ached all over – of course!

One day as he watched one of our toddling grandchildren tumble to the floor after taking a few steps, then step and tumble again and again, Dad said, “If I fell like that I’d be in bed for a week.”  “Dad,” I answered, “She weighs 22 pounds and fell six inches.  When you fall, it’s about 3-1/2 feet.  That’s a long way down for 200-plus pounds to hit the floor.

My point here is that from the time we begin walking we begin falling.  Throughout our lifetime, we have all taken a number of spills: some resulting in skinned knees, elbows and hands; embarrassment and injured vanity; broken arms and legs, or worse: broken hips, and if the fall is from a good distance it might break every bone in our body – or – sadly — result in death.  But more often than not falling down isn’t always someone’s fault, but rather it can be caused by any number of reasons, even slipping on a tiny patch of ice, or the well-known banana peel.  Falling is just the nature of the beast: homo sapiens – mankind – who walks on two spindly legs can be, at times, a clumsy lot.

Certainly, I’m not referring to the infirmed, ill or elderly whose every step is often an act of heroic courage; victims suffering from pain, or any disorder, including those categorized under the Dementia umbrella.  The utmost care, concern, love and compassion must be given to these tender and fading sparks of humanity of whom we have charge with the same care, concern, love and compassion that we bestow upon the babies and children who bless, or have blessed, our lives.

Admittedly, the falling of our oldest citizens is of top priority whether care is given in the home or at a care facility.  However, even at home when care is a one-on-one ratio or better, falls happen.  Statistically, we know that in a care facility a one-on-one ratio is non-existent.  For that luxury, the cost would be prohibitive.

Unfortunately, there is no sure solution to the problem of falling other than restraints placed upon the patient.  Do we want that?  I don’t think so.  I would recommend, though, that families be selective in choosing a care facility for their loved-one.  Also, be a responsible visitor.  It is a known fact that the often-visited resident in a home gets the best care, and those getting the best of care are less likely to be victims of falling.

My main concern with this issue, though, is blame.  As a nation we are so quick to point a finger, to blame, to accuse, and, at times, to take legal action.  Terminal illness is a no-win situation marked with guilt — agonizing guilt — not only for the family believing if only they had done better……, done more……, whatever……; so it is with caregivers who also experience those same self-deprecating feelings of guilt.

It has often been said that death is a blessing relieving man from endless pain or allowing freedom from a lost and tortured mind.  Accordingly, whatever happens after a fall, circumstances need to be the first point  weighed and considered. Furthermore, we should be prudent about finger-pointing; striving first to be forgiving and kind to one another, and ourselves.  If we remember to do that, to be kind and forgiving, then once the sadness mellows and everyone involved finds their own peace, we’ll all be able to sleep just a little better.

Originally posted 2011-01-17 05:13:37.

BREAKTHROUGHS AND IMPATIENCE ABOUT ALZHEIMER’S

This morning one of my emails was titled “We will NEVER see ads like this again.”  A truer statement was never spoken with the viewer’s emotions running from a hardy laugh to severe annoyance: weight loss using sanitized tape worms; the ever-sought-after freckle cream – probably from the 1920s — a very young Ronald Reagan, Lucy and Desi Arnez, plus a couple of babies, and a few doctors endorsing some of the popular brands of cigarettes. Others ads from the 1950s demonstrated the arrogance of Madison Avenue in its view of “the little woman,” and the ultimate of ads approving male chauvinism during the peak years.  But the one that really grabbed me was a poster featuring a thin, angry old man waving his cane as a possible weapon.  Printing was simple and to the point “for prompt control of Senile Agitation – THORAZINE.”

“SENILE AGITATION!”  That was a new term for me. I thought I had heard them all.  Yet there it was in all of its stylized advertising glory; another reference to Alzheimer’s disease easily dismissed as nothing more than a confused grumpy old man. One more reminder of 50-plus years wasted when early attention to this devastating illness might have brought a cure closer.

Frustration dismissed, I wondered about Thorazine, the wonder drug to calm the irritable elder.  Was it a flash in the pan of long ago, just hype for the public, or did it have merit?   I looked it up on the Internet, and found, that indeed, it did have merit and was the first drug breakthrough for help with mental illnesses.

Developed in 1950 Chlorpromazine (CPZ) was a banner achievement for both the medical field and for patients alike.  Marketed in the U.S. as Thorazine (and Largactil in other parts of the world) it was the first synthesized drug with specific antipsychotic action.

That statement made me go “knock, knock” on the door of my memory bank recalling a time when state mental hospitals were commonplace; a last resort where desperate families unable to cope placed their “crazy” loved ones.  The state facilities, under-funded, over-crowded and under-staffed were unable to cope as well, and the hospitals became ugly and shocking “snake pits.”  Early in our marriage Ken and I saw a movie with that title: “The Snake Pit” starring Olivia de Havilland.  An over simplification of her character’s illness was, no doubt, depression which led to horrifying delusions where she saw herself surrounded by countless, slithering snakes.  I suppose it was our first awareness of ordinary people suffering from psychotic problems.  Yet, even in our youthful innocence the movie and the growing social crisis were tucked away in the back of our mental filing cabinet.    

A few years later Ken’s cousin, who was a fabulous school teacher, but suffered from episodes of severe depression tried to commit suicide — several times.  Her husband, at a loss for any solution had her confined for a short time in a state mental institution where she received electric shock treatments, better known as electroconvulsive therapy. At the time I thought how barbaric and wondered if there was no other kind of treatment.  There wasn’t – yet.

Reading about CPZ I found it was considered the single greatest advance in psychiatric hospitals worldwide and became the prototype for phenothiazine, which would later be developed into a class of drugs comprising several other agents, all for the treatment of mental illness.  Furthermore, the availability of this kind of medication began to curtail the indiscriminate use of electroconvulsive therapy and psychosurgery.   Fortified with Thorazine as an alternative treatment, the new phenomenon also became the driving force behind the movement to deinstitutionalize the nation’s mental hospitals.  No doubt those state hospitals, those snake pits, had their share of dementia-related diseases.  In hindsight we know that Dr. Alzheimer’s first case study was found in an insane asylum in 1906 where treatment and conditions were probably even more deplorable.

After reading about Thorazine and how thrilled everyone must have been at that breakthrough, I will now consider that I have been too critical of the medical community. (Although I still believe Alzheimer’s and related diseases would be sitting motionless in a dusty back room had it not been for persons of note: namely former President Ronald Reagan, Michael J. Fox, Sargent Shriver and others who brought The Dementia Umbrella diseases to their full prominence finally receiving the medical attention they deserve.)  I have been critical of precious time vanished while waiting for results from research, impatient for concrete solutions.  However, I also believe it’s easy and understandable for me to be restless while Ken continues to slip away and all I want is something to make him better, to bring him back to where he was, to where we were. I just want my husband back.  So we, the loved ones, can’t help but be anxious for researchers to find a cure, or at least a way to effectively manage Alzheimer’s and all of the other Dementia-related diseases.

Through technology, we hold unending information in the palm of our hand in an electronic device no bigger than a deck of cards.  Doesn’t it seem logical; somehow, that knowledge, information, technology and treatment for the ill should be as available as well?  The answer ought to be, “Of course,” but that’s just not true especially for those with mental problems and diseases.  I suppose the mind is like space: so much of it is yet uncharted.  We need a big breakthrough – like Thorazine — and while we are waiting for one, we tend to be impatient.

Originally posted 2010-10-02 20:01:03.

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