Author’s note:  These long-ago personal essays on my Dad’s demise from Alzheimer’s were never published.  A lifelong friend’s recent loss of his mom to the disease has now reawakened those deep-seated feelings of loss, and I believe that any articulation of such feelings helps drive meaningful conversations at all levels.   The following then are two essays I wrote about both mine and our immediate family’s confounding experience. Some of the data points quoted are of course out of date, but the emotional impacts remain the same to families across the world who live the experience.

Has anyone seen my Father?

A Family’s Introduction to Alzheimer’s

James A. Olson 12/10/96

Effective July 8^th, 1996, my family and I joined a fraternity of American families numbering four million strong.  The members of this association will face the protracted pain of losing the same parent twice to senile dementia of the Alzheimer type.   The twice losing of the parent, my father in this case, is realized in life, and again in death.  Death becomes an embraceable hope while the living loss takes it toll.

As is the case with most mainstream families, as the children grow older, we take for granted the continued health of parents in tangible terms.   We identify the aging process as physical.  Unless faced with the mental degradation of a loved one, rarely does mainstream America take time to focus on what I now realize as an all too common, and underpublicized terminal condition.

Prior to this disease’s invasiveness into my family’s life, my knowledge and expertise of this dementia was derived from the countless jokes and comments Alzheimer’s commands.  Those same jokes and comments are now enough to bring tears of sorrow quicker and deeper than any of the tears of laughter previously drawn in my lifetime.

As a matter of introduction, dad was a poster child of the pre-boomer generation.  He was a non-drinking, non- smoking, hardworking,  Army-Veteran,  father of six (adopted) children who worked for the phone company for 43 years, as well as other side jobs as money demands dictated.   As the quiet disciplinarian of the parenting duo, it was more painful to see his disappointed look than any corporal punishment brought to bear.

Dad was a “techie” in all respects in that his job required it, and his passions dictated it.  He was constantly amazed with new technology and would talk your ear off on his newest discovery, usually leaving the listener way behind as he pressed on with the finer points of a new technology. 

Dad was also the master of all practical job skills.  Yes indeed. Dad could and would fix, build, alter, advise, or be counted on just to be there for anything a child (grown or otherwise) could ask for.  In true poster child form, he asked for nothing in return, and never, ever, did I hear an exasperated gasp slip from his lips.

Imagine now, our disbelief and bewilderment at the changes that have left my mother, sisters, and brothers searching for dad. Our original concern was that his hearing was going as he appeared non-communicative and disinterested in conversation.  In retrospect, it amazes all of us that we did not act sooner. For dad to miss an opportunity to talk on a presented subject should have been like a tornado-warning siren in a broom closet. We convinced mom to make an appointment for a hearing test, which to our dismay, came back negative for hearing loss.  Soon after came worrisome personality changes. An occasionally mean-spirited teasing of the grandkids and an eye-opening lack of tact from a man who never spoke a spiteful nor non-diplomatic word in front of the family during our lifetime.

What proceeded was a protracted and painful battle toward a diagnosis. Painful, as my mother met each doctor’s appointment and test with an undying hope for anything other than what was pointing toward a most unthinkable of conditions.  I live my life in a fashion that focuses in black and white, and what became clearer to me during these appointment s was not at all recognized as clear to my mother. I found myself arguing in favor of the early diagnosis of Alzheimer’s as a way to quickly put an end to the transitional pain of the unknown, while my mother clung enviably to the hope and more than occasional possibility of a curable solution.  To hear your mother verbalize her fervent hope of dad having a brain aneurysm is to put the horror of an Alzheimer’s diagnosis into perspective.

Mom is now reluctantly agreeable to the diagnosis, and at this writing is dealing the loss of her companion of over 47 years as best she can.  She battles with him daily on a number of things.  One of these “things” was the car keys which I spent an entire emotionally draining Saturday morning demanding that he give up. He quietly and with a deep sadness in his eyes finally relinquished those, while appearing nowhere near ready to end the monosyllabic argument he put forward (“NO”).   Unfortunately, this is the single most consistent communication he now completes.  He usually talks only when asked direct questions, and then only with a resounding “yes” or “no”.

Looking for dad has become the best and worst of this new era.  Occasionally he will flash his bright smile, and his very clear eyes will dance at a thought provoked.  He seems to enjoy the laughter of his youngest grandkids and in-fact, seems to identify with their humor more quickly than any adolescent or adult attempts to engage him.   He takes pride in repeating the day’s events and appointments which he somehow stores flawlessly, while at the same time he cannot find the next, or any words at all. 

Is frightening to look him in the eye and find the extremely straight and physically fit 67-year-old so close; and then to “pull focus” and see the stooped and frail 69-year-old whose physical condition has seemingly accelerated 15 years in the last 20 months.  One would not believe by looking at him, that this man would cut, split, haul, and stack eight cords of firewood a year.  His latest effort completed just under two years ago. 

I have put these thoughts to paper in an attempt to put into words a family’s harsh first experience with this incurable and devastating disease that is wreaking havoc and far-reaching losses on our aging population.  These human losses of the patient and to the family can never be truly measured in dollars, and are beyond what words can express.   No family facing this disease should go on that path alone.

I will continue to look for dad whenever I visit him. I know what these future ventures have in store for my family and I, but for now, the successful searches ease the sorrow and fill me with the appreciation for my dad that for too long was taken for granted.

Alzheimer’s through a year of searching for Dad

James A. Olson 8/6/97

It has been a year and month of experiences since my father’s complete and irrefutable diagnosis of having Alzheimer’s disease.

If there is mercy in any true form, it is in the fact that his decline has been rapid, and that possibility of an end to the suffering by dad and the entire family may sooner than later.  Dad’s condition has deteriorated badly the last two weeks.  He is physically ravaged, barely audible in his monosyllabic answers, uninterested in feeding himself without some help from mom, and recently prone to wander during the night within the confines of the house. Most of the time he has lost the ability to truly recognize anyone, and he simply exist in a vacant plain where no one may enter.

Looking for the father I knew has always been the driving force in my visits. His advanced state has taken that from me. As short as two months ago, you could still find him there occasionally. Particularly when grandchildren were present.  You could sense it and see it in his eyes, if only for a moment.  He can no longer make that leap to cognizance, and it has reawakened the grieving that was slumbering while we came to terms and dealt with each advancement of the disease.

Talking with mom throughout this ordeal has been an exercise in emotional control. In the span of minutes I must first suppress tears over her anguish,  and then anger over her refusal (and anxiety) of seeking outside help for herself and dad. She has bound herself to her promise to care for him until the end. A promise we all fear will end with her complete exhaustion or worse.

………She has just called as I am writing this…Dad is in trouble, sweating and non-communicative…..must go now………(approximately 6:45 PM 8/6/97)

Back now….Dad has died.  Officially at 9:27 pm, 8/6/97; unofficially in my mom’s arms where I found them at the kitchen table when I arrived. She had helped him eat his supper, and when she thought he was content with the meal, she went to fix her hair.  Five minutes later, she found him slumped forward, sweating profusely and ice-cold.  Upon my arrival I found her gently rocking him and quietly pleading with him to respond to her touch. I called the ambulance and convinced her to let me hold dad while she made ready for the squads to arrive. I could feel how frail dad was as I held him, and I talked to him for some response, hoping for, but mostly against a reaction. For you see, I had prayed with all my heart on the way to the house that God would take dad in his arms, embrace him and remove him from his suffering and end my moms daily anguish. I prayed like I have never prayed before.

As a fair-weather mid-western Lutheran, I deserve little, but for reasons of larger purpose, God answered my prayers. Dad was barely breathing, taking great gulps of air once a minute with faint air-exchange in-between.  Soaking wet and cold to the touch, I knew dad was leaving. I had asked for it, and yet at that moment, I would have traded anything to hold him daily for another year.  I kissed him on the forehead, told him I loved him, and a minute later removed myself from him as the first responders arrived and took control.

Mom and I held each other, and I persuaded her to let them work and we moved to the living room while they set about a task I did not truly want completed.  After half an hour, they asked for consent to stop revival efforts and mom consented, but within seconds, his heart started again.  He was transported to the hospital where the Doctor gave mom the option of placing dad in intensive care or removing the respirator. The obvious was chosen and allowed.  Mom and I waited for my sister Cindy,  and with her husband Jim and my wife Marlys, we sat with dad as the air-line was removed.  Dad never regained consciousness and with the insurance of morphine, slipped painlessly from us over the course of a half hour.  We wept and tried to be brave, but there being no pretense for anything but naked emotion, we simply clung to dad in a tight circle and tried to absorb every last possible part that we knew of him.  He left us quietly.

Their will never be a stronger indication for me of God’s love as the kindness he bestowed in dad’s passing. This is a strange observation coming from me, for I have been angry with God for the path he chose for dad the last two years.  God has a path for everyone, and I believe dad’s passing from this world to the next while not evident early on, now appears uncommonly humane.  I say this because you must understand the powerful effect our dad quietly and subconsciously had on us as a family.  He was the oak who bent, but was never broken. Strength, and gentleness, wisdom and whim in a package of unmeasurable warmth.  Never having been ill nor had a hospital stay in his entire life, I believe the shock of losing him suddenly would have left us certifiably inconsolable.  I would not have survived as a whole if he had simply vanished. Instead, God first placed upon him a most horrible of diseases, and then spared him from the most protracted debilitating aspects of the affliction while wildly advancing his demise.

I firmly believe that my anger during this period, and the family’s pain, has been nothing more than God’s tempering of our ability to cope with the loss of dad.   He was home until the end and died with family, who while never ready, were prepared to let him go.

I thank God.