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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.

MEAN MR. NICE GUY AND GAL

During her recent visit and before Marvalee sang her songs for Ken, she and I talked about the two people we loved, their Alzheimer’s and where it had taken them.  “Mama has become so mean,” Marvalee lamented, saddened by her statement.  “I guess deep down inside, she had a mean streak in her personality.”  I understood why she might reach that conclusion.  It’s hard to watch these people who have led such rich, full, and often charitable lives become less than who they were, eventually becoming virtual strangers.  Strangers we often don’t like.

“Oh Marvalee,” I said, “You mother didn’t have a mean bone in her whole 105 pounds.”  I remembered Eva strumming her ukulele and singing, dressed in a colorful muumuu, a flower decorating her dark hair which flowed free as a girl and as a mother of four was styled into a bun.  Even after the band, led by her talented husband Ed dissolved, she put on her muumuu, placed a flower in her hair, picked up her ukulele and spent the day at rest homes and care facilities entertaining the patients.  “Your mother was a kind, gentle woman,” I told my troubled guest.  “She isn’t a mean person, nor is Ken – at least not in their hearts.”

I recounted an afternoon when I had taken Ken with me to buy a new refrigerator shelf for one of our rentals.   It was a parts store where we had become frequent customers.  Tony, the associate looked up our needed replacement chatting as usual, almost bantering to Ken as he had in the past.  Silence prevailed, and being puzzled Tony glanced at me.  “Alzheimer’s,” I mouthed.  Puzzlement changed into dismay as he said, “I’m so sorry.  He’s the nicest guy in the world.”  I nodded in agreement as Tony wrapped the shelf and volunteered to carry it to our car. 

 “Let me tell you who the mean ones are,” I continued, recalling an accident of many years ago when the four-year-old son of our mutual friends ran between two parked cars and was struck down.  Slammed onto the street by an oncoming car, Robert was seriously hurt.  At the hospital, he lay unconscious, the doctors doing all they could possibly do to stabilize him while his parents hovered nearby wondering if he would even survive.

“Before I finish Robert’s story, let me remind you of my own son ,Kevin, who, at 18, also suffered because of a disastrous automobile accident.  Not like Robert’s accident, but badly injured when he was thrown from a little VW onto a highway in the middle of Idaho.  But like Robert, he too lay unconscious while the doctor in a very small town hospital worked to save his life.

“So what did these two accidents have in common?” I asked.  Marvalee listened while I continued.  “With Robert stabilized, but still unconscious he called out words like, ‘shut up,’ and ‘stupid.’  Words which his parents had told him were not nice words to use.  To a four-year-old, they were profane.

“Years later when my 18-year-old lay unconscious, he too called out profanity.  His naughty words, however, were much more advanced than those of Robert, and typical of a young adult male. As concerned as we were about the seriousness of his condition,” I explained, “Ken and I were a tad embarrassed as Kevin blurted out all the cuss words he knew turning the air in the hospital a bit blue.  ‘Don’t be embarrassed,’ the doctor counseled, ‘that’s base man calling out.  He’s hurt and he’s angry, and he’s venting.’  Robert had done the same thing with his words of ‘stupid,’ and ‘shut up.’  Even though he was just a boy, base boy was angry, hurt and venting.”

Summing it all together as best I could I assured Marvalee that the meanness was not some long-suppressed personality trait of Ken or Eva, but base man and base woman.  There are times when they are not only confused, but angry and no doubt frightened; both of them locked away in a mad world of nothingness.  Their meanness allows them to not only defend themselves, but being mean is also a way to vent.

 “Of course,” I concluded, “the application of base man and base woman as part of the Alzheimer’s disease is only my opinion.  But I take comfort in believing that both Ken and Eva are not fundamentally mean, but have always been two of the nicest people in the world.”

Originally posted 2010-08-11 07:30:26.

GRATITUDE PRAYERS

A few months ago while still healing from major injuries, I browsed through a stack of magazines, mostly untouched. However, as I shuffled through the pile, I noticed my church magazine, the pages already dog-eared, was opened to an article intended to be the next read. Interesting, I thought picking it up and noting the eye-catching title, “GRATITUDE,” then asking, “Was this a message for me?” Certainly, I felt gratitude. After all I was alive and recovering, and yet I was nudged at times with, “Poor me.  Angry me.  Why me?”  Perhaps I needed to ponder about gratitude a bit more deeply.

Written by a practicing psychologist who had researched the use of gratitude interventions in promoting well-being, he found that by interceding at appropriate times during counseling, thoughts of gratitude were helpful in treating depression and other problems. The doctor also advised that acknowledging thankfulness would be helpful to everyone’s mental health no matter how grave their situation. As a result of being grateful, we could all lead richer, fuller lives.

He also defined gratitude: a positive experience when we recognize gifts or blessings and feel thankful.  It sounded so overly simplistic, yet I continued reading.  Soon I began to reflect on this later portion of my life concentrating on the positive rather than the negative.

In my own defense I counceled me that I have always been prayerful.  As a child, my teachers of faith described prayer as like a sandwich:  a top and bottom piece of bread, or better known in addressing Diety as a beginning and an ending.  Inside of the prayer sandwich we were to express our thankfulness first.   “Before we ask our Heavenly Father for anything,” he explained, “we must always remember to thank Him for what He has given us.”  That could be the peanut butter portion of the sandwich.  The teacher followed giving thanks with permission to ask — the jam or jelly.   As an adult I have wondered if this pattern for prayer was a bit irreverent, but it is such a good pattern, one which I have followed all of my life, and long ago I put aside any thoughts of peanut butter and jelly when making supplication.  Perhaps now, I needed to be more outreaching in my gratitude. 

I recalled from the past that Oprah devoted the better part of a year’s programming to gratitude and journal writing. At the time, I too was caught up in the thought process of making myself more aware of blessings, but never kept a specific journal. Recently, in her magazine, Oprah admitted that through the years she had become so consumed with work there was no time left to write about the good happenings of each day. Reading from an old journal she recognized those great years from before, and commented on how happy she had been.

 The author of the “GRATITUDE” article encourages keeping a Gratitude Journal as well, with the purpose of recording several remembrances each week, but not just in list form. He suggested describing the experience, recording thoughts and emotions for the purpose of savoring and reliving what you had experienced.

In reviewing the past six years of struggling with Alzheimer’s, battling the war which is never won, I remember my friend, Madalyn, who had also battled the same war, until her husband, Darwin, died three years ago. “It wasn’t all bad,” she would tell me, and we often laughed about some of the funny things Alzheimer’s victims do and say. She reminisced about trips they had taken, visits with family which brought joy to her and momentary pleasantries to him. Her happier times with Darwin were similar to mine with Ken. These were all positive experiences: gifts and blessings recognized and thankfulness felt: gratitude.

When I came to the paragraph titled “Express Prayers of Gratitude,” I decided that would be my new beginning. As I continued my recovery in the quietness of my daughter’s home I reflected on being grateful for little things:   One at a time I could lift each foot, place it on the opposite knee and tie my own shoes, I could shower alone and I was beginning to feel confident once more. I wasn’t searching for big, dramatic epiphanies.   Deliberately, I looked for small things to appreciate because there are so many, and small blessings are often overlooked.  Every morning before I struggled out of bed I would look up at the ceiling — still wearing my neck brace and unable to kneel in formal address to Diety — close my eyes and offer a prayer of gratitude without pleading for any favors. (The favors could be requested in later prayers.) My morning prayers would be only of gratitude. I was amazed by the multitude of gifts taken for granted  for which I had to be grateful.

I have been home now for more than two months and my gratitude list grows each day. Ken’s Alzheimer’s is getting worse, but because of his caregiver, Ben, I have a sense of freedom. If I write for a few hours during the day, I know Ken is all right. Ben is with him, and I can nap undisturbed because Ben is here. I am grateful for Ben and for his relief, David. I am grateful for each new day, and my growing ability to actually help Ben with Ken. I am eternally grateful for family and friends. I won’t say I’m grateful for Ken’s illness, because I am not.  I detest this dehumanizing disease and how it has robbed us of so many good years. However, I am grateful for my coping mechanism, my compassion and awareness of others who suffer from Alzheimer’s and other devastating illnesses. I am grateful that through my writing I may help someone else; letting them know they are not alone in their struggle. I am grateful for Ken and the wonderful years we have spent together. Every so often, I see a spark in his eye and a smile. For a moment he is the man I married. Feeling gratitude and offering thanks each morning for all of this and more gives me strength.  Each day I can and will go forward into our daily battle, beginning with a prayer of gratitude.

Originally posted 2010-07-25 07:18:33.

Sometimes It Just Takes A Good Cry

This should have posted previously. (March 10, 2010) I wrote it just before I left, over a month ago. I post it now, so that others will know caregiving, like life has many different kinds of moments. None last very long. You just have to go with the flow. – Debbie Schultz

This morning the sun shines gloriously after a hard rain. Surrounding me the world is bright green, and sparkling blue, with sun glinting on the delta from my son’s backyard.  All seems right with the world. I will be on my way home in a few days; back to Utah and my mountains. The snow is gone from the streets and spring is peeking through, or so my husband says. These last few days I have really been homesick and it feels good to say that Utah is my home, an ambiguous phrase that I couldn’t say before I left a month ago.

Taking care of my Dad has been one of the most challenging experiences I have had in my life.  I did the best I could, and I could not have done anything else. Whether the systems I have set up work remains to be seen.  He has good, kind people caring for him in his home. They may not be able to meet his needs if he continues to get more combative and difficult to keep clean. Unfortunately another one of the evils of this disease is the patient is often his own worst enemy.

Before I cared for my Dad, I thought families who put loved ones with Alzheimer’s in institutions were somehow copping out. Now I know that each family makes their decision based on their own resources and abilities. For some it is an easier decision to make than others. I don’t know what my father was like right before the accident, I just know that caring for him has been really difficult. I cannot, however, excuse the treatment of turning people into vegetables, hoping they die quickly. I feel he was treated that way in the hospital: sedation, catheterization, tube feeding or no feeding. The will to live is given up very easily in those circumstances.

What the answer is, I don’t know. I feel a huge responsibility in leaving. I know when I get home I will worry about how he is getting on. On how both of my parents are coping. If the caregivers work out and can handle both of my parents? Will my mom be able to heal while still worrying about my father? I know I will be back soon, but I am not independently wealthy and I have a family and business to run in other places.

So yesterday among all of these conflicting feelings, and burdened by the enormity of everything, and the difficulties continually surfacing regarding my father’s care, I had a good, hard sobbing cry. And then I watched some tender movies and cried even more. Like this morning’s early rain I now feel cleansed, and I’m ready to continue forward doing the best I can, while trusting in a God who sees the whole situation and will someday answer all of  my questions.

Originally posted 2010-04-28 03:54:10.

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.

ALZHEIMER’S, HEALTH AND ANGER

Angry man

Anger is a part of Alzheimer’s, and is present in both caregivers and AD victims.

April 20, 2012 — Do Alzheimer’s patients get angry?  Absolutely!  However, I see Ken’s anger is more of a defense mechanism – a reaction to an immediate situation he can’t control: he growls,  hisses, grumbles, or shouts profanity and can be combative as part of the anger he spews upon me, Ben or Crizaldo when he feels threatened or doesn’t understand what’s happening, and then it’s quickly dismissed – usually.  He doesn’t hold onto it because his anger isn’t the same anger he may have felt when he was well, or even in the mild cognitive stage of his Alzheimer’s. Continue reading

Originally posted 2012-04-21 05:34:14.

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.

MEETING DOTTY AND COMPARING

I met Dotty last week.  Dorothy is the mother of Bob DeMarco, writer and editor of The Alzheimer’s Reading Room, and his topics appear to be endless.  To cover all the bases he is a prolific writer, sometimes invites guest bloggers to contribute, quotes from many sources, and all in all probably supplies the best variety (including professional articles from medical people) of AD information on the internet.  Bob has written 1,810 articles while caring for his 94-year-old mother who has been a victim of AD for approximately seven years.  Bob is devoted to her.  He is also striving to be the best caregiver possible.

Dotty met her admirers through a short video Bob made for the Reading Room.  I was impressed.  Ken having been diagnosed with Alzheimer’s about the same year as Dotty, I expected them to be comparatively close in their journey.  I do have to admit that Dotty is ten years older than Ken which makes a tremendous difference in their physical condition.  While Dotty appears to get around with “hurtful knees,” Ken still has good upper body strength, but does have a little trouble keeping his balance and when he walks there is some shuffling.

What did impress me with Dotty was her ability to carry on a comparatively good conversation with Bob.  In the video Bob spoke of ice cream.  She knew about ice cream, appeared to remember ice cream, and when it was offered expressed excitement in getting some.

Ice cream is Ken’s favorite dessert.  My freezer is never without it.  Before his illness I could count on him going to the garage and bringing in a container.  He wasn’t content to get a bowl and serve himself a helping; rather he would sit down and eat from the carton.  Even though it was just the two of us, I felt annoyed at this somewhat inconsiderate practice.  “Don’t worry,” he would counsel, “in a few days I will have eaten the whole thing leaving no germs for anyone else.”  Then he would laugh knowing I didn’t approve, nor did I have a snappy comeback except maybe, “Oink, oink.”

When I serve him ice cream now, I have to tell him it’s ice cream.  He takes a bite and says, “This is good.”  However, he never says, “I would like some more ice cream,” or “May I have some ice cream.”  He no longer remembers the name of his favorite dessert or that he even had one.

I also listened to a recording of “Dotty in the morning.”  She is conversational; touching on the weather, the day, her knees hurting, and even sends a verbal jib to Bob in a form resembling sarcasm.  She was also a little cranky, which is permissible at 94.

I suppose what I am doing here is making a comparison.  Even though there is that age thing, both Dotty and Ken have had AD for approximately seven years.  I also suppose it’s a natural thing to do when there is a similarity in a problem; in this case an illness.  I once asked my good friend Madalyn a few “when” questions.  Kindly, she said, “Everyone is different.”  Even though I am convinced of that I found it interesting to do a little comparing with Dotty and Ken, concluding that Ken’s disease has ravaged his brain much more than AD has ravaged Dotty’s.

Within our immediate families we have Ken’s mom and dad, his sister, my mom and Ken, that’s five.  Outside of our immediate family, and still counting, we have close friends and cousins who have been stricken with AD and the list is growing.

Still my search for answers continues.  With each dear person I tend to make comparisons – as I have done with Dotty – and as I compare I am filled with more questions.  Uppermost being (which has no answer), what is it that allows the disease to ravage some victims very quickly, and others more slowly?  The following are other questions always on my mind:

1,  Is there recognition?  Their children?  Spouse?  Brothers and Sisters?  Friends?

2.  Can they still carry on a conversation?  How far into AD did they lose that ability to communicate in what might be considered a normal conversation?

3.  Are they combative?  If so when in their AD did it begin?

4.  Are men more combative than women, or is it an individual thing?

5.  Can they still feed themselves?

6.  Can they attend to their private needs?  If not when was the change noticed?

7.  How long does AD last?  (I know that answer from the people at Alzheimer’s Research.)  Victims can live with AD for 20 years or more.

8.  After watching and listening to Dotty I could ask, “Why is Dotty able to communicate better than Ken even though their time frame is similar?”

Another case in point is Loretta, Ken’s older sister.  They are very much alike in their digression, although she was stricken a few years before Ken.  Their decline has had a separation of about three years which is their age difference, making it all the more interesting.  I have often said that because this sister and brother are so much alike they could have been twins – identical twins – which is impossible.  Still, I have always called them two peas in a pod.  So much alike during their lifetimes, and also is their AD journey.

Both of their symptoms resemble those of their father, Nick, rather than the symptoms we noticed about their mother.  During his AD illness, Ken’s father was stubborn, angry and I believe could have been combative, but we don’t know.  His mother was meek, submissive and depressed during her husband’s illness.  In private care, with her own AD she continued being meek, submissive and depressed, but she was also grateful, friendly and kind.

My own mother regressed back to a little girl.  I watched her lose memory of my sisters and me (she knew I was someone, but didn’t know who).  At one point she though of herself as a young adult wanting to meet people her own age so she could get married and raise a family.  She even asked my father if he could introduce her to other young people in the community.  Continuing to regress, she became a little girl who believed I was her mother saying one day, after spending hours with me in the car, “I was with my mother all afternoon.”

People have said to me that Alzheimer’s is an interesting and fascinating disease.  Then they apologize because of their supposed lack of sensitivity.  “Don’t apologize,” I answer, “I thoroughly agree.”  Although I am completely immersed in the caregiving aspect of the disease, and feel downhearted at times, I also find AD fascinating.  I suppose that’s why I am so curious and plagued for answers.  I will continue to search and compare Ken with other AD victims in my own quiet way.  Perhaps it will help me gain more understanding about my assignment as a caregiver.  Like Bob, I would like to be the best I can be.  I do know that reading of others who share in this journey helps me to cope.

Meanwhile, I hope to become a more compassionate, caring and empathetic person — and caregiver.  Nevertheless, as I search for answers I must remember the sage words from Madalyn and accept the fact that “everyone is different,” including Ken and Dotty.

Originally posted 2010-12-05 04:26:47.

WHERE AM I? AND A PROMISE KEPT

Our first visit to the neurologist was January of 2004.  He examined Ken, talked with me, and then both of us together. His findings were inconclusive and I mentioned that I would like to avoid the “A” word even though there was a high probability Ken’s future was headed in that direction.  The doctor prescribed Aricept advising it might help.

Near summer’s end we decided to take a road trip through the southwest seeing people and places we would doubtfully visit again.  Ken drove having just renewed his driver’s license in June passing the tests with flying colors.  His reflexes were still good and he was an alert and safe driver.

Our trip was wonderful as we managed to see everyone and everything we had on our agenda.  But twice as we drove along some of the older, more scenic highways Ken would say, “I don’t have the slightest idea where we are or where we are going – where am I?”  I told him not to worry.  “We’re on vacation heading west on the old Highway 40 and it’s okay because I’m the navigator and know exactly where we are and where we’re going”  When in doubt, I would give him directions.  Furthermore, I drove through the cities to eliminate any confusion.  He trusted and believed me.

The following year in early spring he was requested to retest at the DMV.  He failed the written test so badly they disallowed any further testing.  Regardless of how well he had done the year before new tests were required following January’s firm diagnosis of Alzheimer’s.  Conclusion: driver’s license revoked.  More and more obvious signs of memory loss and confusion were beginning to appear even though most of the time; he was “so” Ken.

Over Labor Day weekend in 2006 our daughter Deborah and her husband Mark joined us on our property located in the Sierra-Nevada foothills, where we kept our trailer.  They also brought a group of young women from our church to enjoy the splendor of fall’s beginning and some outdoor camping experience.

We had purchased the land in the mid 90s with a country-retirement home in mind.  The site overlooked a valley of greenery and lakes, and in the evening we could sit where the house would be and watch the sun set.  With a septic tank, well, graded site and roads most everything was ready and waiting for the building to begin. The trailer was intended to be a weekend vacation place, a mini home where we could stay during construction, and for family to enjoy when we weren’t there.

We added an attached screened porch, doubling the floor space, and a deck under the trees.  It was our getaway while the county offices insisted on plan revisions, PG&E scheduled us for the 12th of never, and we encountered enough red tape to outfit the local high school’s marching band.  Then, once again, we began to notice the ever-increasing signs of Alzheimer’s.

That Labor Day with Debbie, Mark and the young women was the last weekend we spent in the trailer.  As the sun dipped out of sight and the merriment from the group of girls reminded me of other times and other camp outs with own family, twilight brought further confusion to Ken.  After dark he became extremely disoriented.  “Let’s go,” he urged.  “We’re here,” I told him, “we’ll be spending the night right here in our trailer.”  I reminded him of all we had done to make it comfy and cozy, and how our sons Keith and Kenny had enclosed the area with split-rail fencing to keep the cattle away.  Nothing I said sparked a memory.

We unfolded the built-in beds and covered the mattresses with sleeping bags.  “I don’t want to sleep here,” he complained.  I made every effort to assure him that we had spent many nights in the trailer, our home away from home, but he remained unconvinced.  Finally, he accepted the fact that I was going to stay and, unhappily, he climbed into bed.  I could see in his face he was worried and a little frightened with his accommodations saying, “I don’t even know where I am.”  “You’re with me in our trailer,” I told him.

His disorientation had been a night thing.  The next morning he arose finding himself very much at home enjoying the group of young women, the country and our children, but I was certain the previous evening’s experience must have been terrifying – to be lost and not know how to be found.  Time in the country used to be invigorating and restful, but no more.  I guess it wasn’t/isn’t always a good idea to bring such an unfamiliar change to an already confused mind.

Up until recently any confusion about where he was could be easily set aside with a few comforting comments, but as his Alzheimer’s worsens familiar things and places seem to be vanishing before our eyes.  “Where’s the bathroom?” he will ask. “Is this my house? My backyard?  Where am I?” he questioned getting out of bed.  I reassured him, “You are home.  This is your bedroom, your backyard.”

Ken’s decline since February has been dramatic which I measure from month to month while others who don’t see him as often are surprised at how quickly he has digressed down from one plateau to another.  Alzheimer’s takes its victims to that place of no return one step at a time.  Even though it’s his journey, I walk beside him, and there are times when even I ask myself, “Where are we on this road that leads him to nothing?”

As unsure and as slow as he is, his health is fairly good; his upper body is especially strong.  Still, with Alzheimer’s there is no way of calculating life expectancy.  Former President Reagan suffered with the disease for 10 years, and according to an Alzheimer’s research letter, people can live with it up to 20 or more years. Without being maudlin I sometimes think about the “Where” question with application to another venue, “Where are we?” as we drift aimlessly along life’s conveyor belt asking yet an additional question, “What’s next?” For some questions there appears to be no answers.

In the beginning when Ken and I talked of his disease, it was with a lot of trepidation, but he said, “We can get through this together.” At the time, I agreed with him asking if he would promise me just one thing, “Always believe and trust me.”  Eagerly and with the same true sincerity as his wedding vow he answered, “I promise.”  It was, however, a promise he is no longer capable of keeping.  Sometimes, I will extend my hand asking if I can help.   Usually, he waves me aside wanting no interference from a stranger. But occasionally I am surprised when he reaches out accepting me and my help.  Holding tightly he pulls and pushes himself from a chair, continuing to hold my hand.  Briefly, he is kind and grateful.  For me, in those moments, it’s a promise kept.  My husband believes and trusts me even if it’s only a fragment of time.  If he were to ask, “Where am I?”  I would answer, “With me.”

Originally posted 2010-10-23 18:59:34.

THE INHERITANCE

There’s seems to be one strong emotion that remains in the psyche of Alzheimer’s patients long after many of the others are gone.  Well, actually a few.  Of course, anger is there – front and center – demonstrated often when Ken is frustrated or confused, but that’s not the one I have in mind.  I’m not certain if he experiences or even understands happiness or sorrow at this point in time.  Nor am I very sure about love even when he knows me he is reluctant to be close.  He might allow a quick kiss or let me to hold his hand once in a while, but there are no hugs, no passion, no embraces spurred by memories from long ago, and there appears to be no tenderness or compassion.  Outwardly, he seldom laughs, which is sad, because he was a great laugher and truly enjoyed a good joke. Even watching “America’s Funniest Videos” he sees no humor.  There are times, however, when he chuckles while talking to himself, or at night when he talks in his sleep he might chuckle again. What he does possess more than anything is feeling independent, and I’m not even sure if independence is considered an emotion.

He often refuses to do something just because it’s been requested.  “Ken, come and have breakfast.”  “No,” might be the ready reply followed with, “I’m tired of you telling me what to do.”  So I try another approach, showing him the plate filled with food asking him if he would like to eat.  Not waiting for a reply, choices follow.  “We’re going to put your breakfast on the table and you can eat it or not.  It’s your decision.”  Then I step aside, but ready to help if the need arises.

It’s usually Ben or David preparing the meals, but when I hear him demonstrating his stubborn streak I step in making an effort to help and encourage Ken to do what is best for everyone, and whatever works.  We all like to be independent, to make our own choices, to master our own ship so to speak.  That kind of tenacity for freedom, that self-determination doesn’t necessarily wait to appear in old age.  Often it begins with a baby’s first step – or before — or anytime thereafter.

The first word out of the mouth of our granddaughter Elizabeth was, “NO!”  I wasn’t there but I imagine her first sentence might have been, “Me do it.”  From the time she managed to wiggle into a tee shirt and pants she insisted on dressing herself, not only dressing, but choosing the clothes.  The haphazard combination of choices pulled from her drawer was often laughable, and worn any which way — inside-out or backwards — or both.   Elizabeth’s original “look” would never appear in a fashion layout even for most avant-garde of children’s wear.  Her selections were adequate for home and playing in the backyard sandbox, but there were times when Mom and Dad wanted this beautiful tow-headed child put together like someone cared.

Waking from her nap one afternoon, Mom already had the outfit laid out.  “Here,” said Mom, “put these on.”  “NO!” came the quick answer as Elizabeth ran to the dresser pulling out whatever came first. “We have to hurry,” advised Mom.  “We’re going to your brother, Sean’s, Little League game.  Let me help you.”  It was a tussle, but Mom won.  Elizabeth was not happy.

At times you don’t try to reason with a three-year-old, you just firmly do what needs to be done.  Into the car filled with waiting family Elizabeth continued to cry grabbing at the tee shirt and shorts, “Dod like deeze.”  Minutes later she was still making a fuss as they pulled into a parking space at the ball park next to the stands.  “Let’s go,” instructed Dad, “everybody out.”  “No.  Not going,” the child protested with tears and sobs still evident.  “Let her cry it out,” instructed Mom.  “Elizabeth knows where we are.  She can see us and we can see her.”

The game had started: fouls, tips, a few hits, dropped balls, over-ran bases and lots of outs with the crowd cheering as only Little League parents can cheer.  Suddenly the rooting stopped and the air was filled with laughs, giggles, and a few ahhhhs. Leaving Mom’s choice of clothing in the car Little Miss Independence had stripped down to her birthday suit and was on her way to sit with the family wearing a smile and exactly what she chose: nothing.

I often think of Liz and her I-can-do-this-myself attitude when it’s clean-up time for Ken.  Not that independence is something new for him.  After all, he left home to join the Merchant Marines at age 15, sailing the South Pacific in a sea-going tugboat towing portable dry docks during WWII, but that was then and this is now.  A little less of that self-sufficiency would be a good thing for the caregivers.

It’s a two-person job, and our previous care helper, Mel, was fortunate enough to find full-time work.  Good for him, but not good for me and Ben.  However, I felt sufficiently recovered from the accident to take Mel’s place as helper.  Ben does the hard part, while all I do is hold his already restrained hands to keep him from clubbing Ben with his fists if he’s in a combative mood.

Once Ben gets him into the shower Ken is content.  Unrestrained, the water runs over him like warm rain, and he often admits, “That feels so good.”  Handing him a towel he looks for arm holes and a place for his head.  “No, no, not a shirt,” Ben instructs.  “It’s a towel, dry yourself.”  Eventually Ken gets the idea and dries himself finally wrapping the towel around his waist, tucking in the end to hold it in place; a guy thing and something he has done all of his life.  Handing him a sweat shirt, Ben continues, “This is your shirt.  Put it on.”   Stubbornness kicks in once again and he throws the shirt into the hall.  “This is not my shirt, and I’m not going to wear it.”

True, it isn’t the type of shirts he wore in the past; the ones with a collar and buttons down the front, but the sweat shirt is practical for the caregivers; easy on, easy off and easy to wash and dry.  So the uniform for most days is sweat clothes.

Eventually he accepts the shirt looking at it as if for the first time, he asks, “Is this mine?”  “Yes,” we both agree, “put it on.”  That he can do all by himself, but requires help with the rest of the clothing: “underwear,” baggy, high-water sweat pants, white socks and moccasins.  His glasses were resurrected from the past: heavy horn rims from another era replacing his newest ones lost in the accident.  The big ugly ones are held in place with a thick red elastic rope coming from the ear pieces to the back of his head.   He doesn’t look at all like the suave Ken, tall and slim with a flat stomach, who wore Wranglers, a good-looking shirt, real shoes, and totally cool glasses.  “Grandpa looks a little dorky,” comments Kristina, who lives with us.  “I agree,” I tell her, “but there are times when we have to settle for sensible.”  However, I wouldn’t be at all surprised if one day he grabbed at the dorky clothes and said, “Don’t like these!”

And Elizabeth?  From one sailor to another, Grandpa would be so proud of her.  Liz has been grown up for a number of years, finished her education and is now sailing the Mediterranean as part of the crew on a private yacht.  Tall and graceful as a willow wand, she still has hair the color of golden flax, puts herself together like a fashion model, and remains Miss Independence to the “nth” degree. You might say she inherited that from her grandfather.

Originally posted 2010-10-16 18:00:31.

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