Earlier today, as I was doing the laundry, bagging up the trash filled with wet, smelly Depends and admittedly feeling a little sorry for myself, I heard my Dad mumbling something from his living room/bedroom suite. As I came into the room I heard him say what sounded like, “keep your promise” several times. I stealthily approached his bedside to ascertain if he was talking in his sleep, fully awake or wandering betwixt in the foggy hinterlands and hallucinating ‘hobos in the house’ or ‘monsters under the bed’. Once again he muttered, “keep your promise” I said, 'OK' just to comfort and quiet him, without knowing or caring if he was speaking specifically to me or offering phantom fatherly advise to the hobos. As a child and a teenager, my father tempered his orations regarding the primacy of character, integrity and honor with massive does of fear, intimidation and foreboding warnings. Of course, at the time, I dismissed him and his rants. To me, he was a deranged old man who was out of touch with my generation and I ignored his tirades; to my later dismay. But now, 40 years later, even his nebulous mumblings, both rational and crazed, have begun to garner my attention. Perhaps because they are delivered in a meek and gentle voice, the antithesis of my childhood recollection of his fiery diatribes or because I know his time is short. Hopefully, it is because I am finally able to genuinely hear his voice, however weak, and his message however strong.
I made eye contact with him and in a clear, solemn voice, he said to me for the final time, “Keep your promise”. Hesitantly, I asked him ‘Which one’? He locked his failing, glazed eyes onto mine and spoke softly, “to look after us”. I was both thunderstruck and chagrined. I said back to him with all the earnestness I could muster, “I will Dad. I will keep my promise to ‘look after’ both of you” and with that, he closed his eyes and quickly fell back to sleep. Soberly I went back to my previous chores, but the ammonia vapors from the soiled diapers must have caused my eyes to tear up and I began to weep. How wretched is it that a 94-year-old Alzheimer’s patient believes that he must exhort his son, from what will ultimately be his deathbed, to keep his promise. And then I remembered who I was to him and our history. How, as a willful child and then as a rebellious teenager, I mocked him, rejected his values and disdained him. Perhaps he remembers me all too well.
What I heard standing beside that bed were not the ramblings of a moribund Alzheimer patient, but sage words from a man of principle, character and honor. So 40 years later the lessons from the harangue of a zealous young dad were finally heard by the tone-deaf son in the soft murmurings of a wise, wizened and doting father. I got it dad; integrity, character and honor really do matter.
Rest easy Dad, and sleep away the troubled miles that lie ahead. But I have promises to keep. And miles to go before I sleep.
Thursday, April 30, 2009
Friday, April 24, 2009
“O How the Mighty Have Fallen” a story of The Fall and Rise of the Edwardian Empire
Edward, my 94 year old father, and the hoary patriarch of the Wisniewski/Stanley clan, fell and broke his hip two months ago. He doesn’t remember any of it, not the 4 day hospitalization to repair the damage, nor the subsequent stay in an award winning rehabilitation facility; which, in reality, is just a pretentious marketing term for a nursing/old people’s home with a meager physical therapy department with a few friendly, but overworked therapists (I’ve donated more and better ‘gently used’ exercise equipment to Goodwill Industries in the past year). Not surprisingly, these senior citizen warehouses are one of the few growth industries left in Florida. Most post-hospitalization convalescent stays in these types of facilities are paid for by Medicare or private insurance. So the patients are usually warehoused in and out as quickly as possible; unless the administration can ‘sell’ the family on the idea that their relative would be better off in their long-term custodial care for the low, low price of only $7,000 a month. Kind of like a geriatric bait and switch scam run by the health care industry. So unless you are a good sport and agree to eventually die in their award winning facility, a few days to a few weeks is the most you can normally expect to stay before they send you packing and they bring in the next batch of maimed prospects from the busy hospital surgical wards. Dad, however, was there for six long weeks. His operation, while successful, left him in an anesthetic fog. Anesthesia, while gratefully putting us into the sweet arms of Morpheus during surgery, apparently destroys brain cells in the process. Usually a fair trade off, but Alzheimer’s patients need all the brain cells that they have left just to stay alive. We, on the other hand, have plenty to spare and expend them with reckless abandon with our alcohol consumption, recreational drug use and the banging of our heads against the wall at our recent economic losses and our future prospects.
Dad spent most of his recovery in a post-operative stupor that the doctors were predicting would probably be permanent given his age, poor health and advanced Alzheimer’s disease. But slowly he began to awaken from his stupefied condition. By then they had transferred him out of the general rehab wing into a secure Alzheimer’s unit, in the hope that he would soon go on Medicaid and become a permanent (till death do us part) resident, thereby enriching the stockholders and ensuring the job security of the dispirited staff. There were only 19 other people in this locked ward (the maximum) and one could see firsthand the dehumanizing effects this disease has upon its victims during its final assault upon the human mind, body and psyche. Dad is currently in stage 6 of the 7 classified stages Alzheimer’s disease. To me, it appeared that most of those folks had to be in a yet unclassified stage 8 or 9. The administrators touted this special unit for its ‘home-like environment’ and where its residents were ‘one big happy family,’ and it was - if you had been raised by a family of addled sloths. Their acclaimed activities program seemed to consist of a once a day gathering of frightened looking, wheel chair bound patients drawn together in a tight circle, like miniature two wheel Conestoga wagons fending off an impending Indian attack, and then throwing a beach ball at them and watching it bounce off their head or chest. Some lucky residents would actually bat it back on occasion, but I wasn’t sure if it was intentional or a lucky coincidence of the attendant hitting a patient’s flailing limb during an involuntary spasm. In spite of the daily quasi-sadistic, geriatric dodge ball, Dad slowly started to recuperate. Very slowly. I calculated that at his current rate of progress he would be back to his pre-fall condition within 9 to 12 months, if he lived that long. But the administration soon informed us that Medicare would no longer cover his bill because he wasn’t making the ‘recommended’ progress. HELLO? What do you expect from a man who has been in a near coma for weeks, who almost died before and after his partial hip replacement surgery from atrial fibrillation, who is 94 years old, nearly blind, lost and confused as to who he is, let alone where he is and is subsisting on meager portions of mushy institutional food? But rules are rules and since Mom and Dad were unable to pay the $233 a day tab out of their meager savings or willing to suffer the economic tsunami that Medicaid would wreak upon the last of their hard earned retirement nest egg and modest monthly income, he was politely given the bum’s rush and asked to forsake his new ‘one big happy family’ and vacate their prestigious, award winning, compassionate long term health care facility-with crappy rehab equipment.
The day before his scheduled release I informed my forlorn father that he was going to be coming home tomorrow and immediately his countenance brightened like a newly born-again convert at a Baptist tent revival. If there had been a baptistery nearby he would have no doubt leapt out of his wheelchair with joyous abandon and used that insidious beach ball as a springboard to launch himself into the water. (Praise Jeeeesus. It’s a miracle!!) When I came to pick him up the next morning he was sitting in the dayroom with the anxious demeanor of a hopeful parolee waiting in line to be released from prison. “Let’s blow this joint,” he said with incisive conviction. I was the one blown away by his sudden onset of lucidity and humor. When and where had he last used that phrase? And with neither a smug look, nor a sorrowful glance toward the other convicts on death row, he quietly departed out the locked doors with his newly re- found son and redeemer at his side.
In the car, during the short trip to our double wide chateau, he asked me in all sincerity: “What kind of jail was that place?” I tried to explain, but he was too excited by the simplicity of the fresh air and the kaleidoscope of scenery cascading before his eyes to listen to such fanciful tales of broken hips, anesthetic fog and carnivorous administrators. At home he made such rapid improvement that I began to fantasize that our long family nightmare was coming to an end and that things would return to a semblance of normality for him and autonomy for me. It was, of course, not to be. His hard fought gains quickly became losses as he stoically slid down that slippery slope of dementia. He still has his lucid moments and he does seem to be happier at home in a familiar environment, if for no other reason, than not having to watch 19 other human beings fall silently into the crevasse of nothingness. Now, once again, he has only me and his wife, who has Stage 4 Alzheimer’s, to watch over him and comfort him. My mother is relieved and grateful that her husband of 66 years is once again able to recognize and acknowledge her presence when she comes into the room. These two venerable luminaries whose light was once a blazing sun to their family and a North Star to their students and colleagues is slowly being dimmed by dementia, but when they are together they can still light up a room with their love.
Dad spent most of his recovery in a post-operative stupor that the doctors were predicting would probably be permanent given his age, poor health and advanced Alzheimer’s disease. But slowly he began to awaken from his stupefied condition. By then they had transferred him out of the general rehab wing into a secure Alzheimer’s unit, in the hope that he would soon go on Medicaid and become a permanent (till death do us part) resident, thereby enriching the stockholders and ensuring the job security of the dispirited staff. There were only 19 other people in this locked ward (the maximum) and one could see firsthand the dehumanizing effects this disease has upon its victims during its final assault upon the human mind, body and psyche. Dad is currently in stage 6 of the 7 classified stages Alzheimer’s disease. To me, it appeared that most of those folks had to be in a yet unclassified stage 8 or 9. The administrators touted this special unit for its ‘home-like environment’ and where its residents were ‘one big happy family,’ and it was - if you had been raised by a family of addled sloths. Their acclaimed activities program seemed to consist of a once a day gathering of frightened looking, wheel chair bound patients drawn together in a tight circle, like miniature two wheel Conestoga wagons fending off an impending Indian attack, and then throwing a beach ball at them and watching it bounce off their head or chest. Some lucky residents would actually bat it back on occasion, but I wasn’t sure if it was intentional or a lucky coincidence of the attendant hitting a patient’s flailing limb during an involuntary spasm. In spite of the daily quasi-sadistic, geriatric dodge ball, Dad slowly started to recuperate. Very slowly. I calculated that at his current rate of progress he would be back to his pre-fall condition within 9 to 12 months, if he lived that long. But the administration soon informed us that Medicare would no longer cover his bill because he wasn’t making the ‘recommended’ progress. HELLO? What do you expect from a man who has been in a near coma for weeks, who almost died before and after his partial hip replacement surgery from atrial fibrillation, who is 94 years old, nearly blind, lost and confused as to who he is, let alone where he is and is subsisting on meager portions of mushy institutional food? But rules are rules and since Mom and Dad were unable to pay the $233 a day tab out of their meager savings or willing to suffer the economic tsunami that Medicaid would wreak upon the last of their hard earned retirement nest egg and modest monthly income, he was politely given the bum’s rush and asked to forsake his new ‘one big happy family’ and vacate their prestigious, award winning, compassionate long term health care facility-with crappy rehab equipment.
The day before his scheduled release I informed my forlorn father that he was going to be coming home tomorrow and immediately his countenance brightened like a newly born-again convert at a Baptist tent revival. If there had been a baptistery nearby he would have no doubt leapt out of his wheelchair with joyous abandon and used that insidious beach ball as a springboard to launch himself into the water. (Praise Jeeeesus. It’s a miracle!!) When I came to pick him up the next morning he was sitting in the dayroom with the anxious demeanor of a hopeful parolee waiting in line to be released from prison. “Let’s blow this joint,” he said with incisive conviction. I was the one blown away by his sudden onset of lucidity and humor. When and where had he last used that phrase? And with neither a smug look, nor a sorrowful glance toward the other convicts on death row, he quietly departed out the locked doors with his newly re- found son and redeemer at his side.
In the car, during the short trip to our double wide chateau, he asked me in all sincerity: “What kind of jail was that place?” I tried to explain, but he was too excited by the simplicity of the fresh air and the kaleidoscope of scenery cascading before his eyes to listen to such fanciful tales of broken hips, anesthetic fog and carnivorous administrators. At home he made such rapid improvement that I began to fantasize that our long family nightmare was coming to an end and that things would return to a semblance of normality for him and autonomy for me. It was, of course, not to be. His hard fought gains quickly became losses as he stoically slid down that slippery slope of dementia. He still has his lucid moments and he does seem to be happier at home in a familiar environment, if for no other reason, than not having to watch 19 other human beings fall silently into the crevasse of nothingness. Now, once again, he has only me and his wife, who has Stage 4 Alzheimer’s, to watch over him and comfort him. My mother is relieved and grateful that her husband of 66 years is once again able to recognize and acknowledge her presence when she comes into the room. These two venerable luminaries whose light was once a blazing sun to their family and a North Star to their students and colleagues is slowly being dimmed by dementia, but when they are together they can still light up a room with their love.
Monday, April 20, 2009
Meet the Principals
This blog is part of a final exam of an elective course that I am taking on a pass/fail option. The title of this graduate level course is Extreme Care Giving 501. There are no credit hours or Continuing Education Units to earn. Nor are there any certificates or diplomas offered as an incentive for its completion.
The principals of this colloquium are my elderly parents who suffer from Alzheimer’s disease and a host of other maladies and infirmities. They both are in deteriorating health and need someone to help them in their everyday affairs and this sullied business of dying with dignity. They view me, their only son, as their last great hope for a stay of execution from a nursing home and a slow death by a thousand cuts of dispassion and synthetic smiles.
My father’s name is Edward and he is 94 years old. He has Alzheimer’s disease (stage 6 of 7), prostate cancer, heart disease and glaucoma. He is semi-ambulatory, his gait is but a very slow shuffle. My mother, Sue, is 92 years old and has the beginnings of Alzheimer’s disease (stage 4) that has felled the mind and soul of her husband of 66 years. She also has heart disease, spinal arthritis, shortness of breath, moderate hearing loss and a death wish. Me? My name is Michael. I am 57. I have heart disease, COPD, gallstones, bi-polar disorder and major depression. I have had one major heart attack, two divorces, three misdemeanors and several failed suicide attempts.
Because of my mental illnesses, character flaws or sheer idiocy I have either quit or failed at almost everything I have set my hand to thus far in my life: marriages, relationships, filial obligations, parenting, careers, businesses, therapy, suicide, hobbies, friendships, religions, and a host of things that most people accomplish seemingly without effort and usually without remark. Despite my untenable resume, character flaws and the multitude of red flags waving briskly in the wind, I am their caregiver. I am their 24/7/365 live-in attendant, companion, private nurse, therapist, chauffeur, banker, concierge (and now part-time raconteur) in this house of trepidation and habitat of hope.
I know very little about blogging. To be honest, I have never even read a blog. So bear with me. I have tried my hand at journaling and keeping a diary in the past, but I lacked the self-discipline to write consistently enough to record my thoughts to be of any value literarily, therapeutically or historically.
This blog will be a chronicle of my final exam and of my parent’s struggles with their infirmities, angst, fears and mortality. My hope is that my efforts at care giving will somehow silence their unspoken disappointments in me and attenuate their anguished psychic memories of me that even their Alzheimer’s disease cannot completely erase. It is the final opportunity of the prodigal son to be successful at something.
Thus, their care is not just the topic of yet another blog; it is my life and maybe, just maybe, my redemption. It is, in essence, my final exam as their son. Pass or fail.
The principals of this colloquium are my elderly parents who suffer from Alzheimer’s disease and a host of other maladies and infirmities. They both are in deteriorating health and need someone to help them in their everyday affairs and this sullied business of dying with dignity. They view me, their only son, as their last great hope for a stay of execution from a nursing home and a slow death by a thousand cuts of dispassion and synthetic smiles.
My father’s name is Edward and he is 94 years old. He has Alzheimer’s disease (stage 6 of 7), prostate cancer, heart disease and glaucoma. He is semi-ambulatory, his gait is but a very slow shuffle. My mother, Sue, is 92 years old and has the beginnings of Alzheimer’s disease (stage 4) that has felled the mind and soul of her husband of 66 years. She also has heart disease, spinal arthritis, shortness of breath, moderate hearing loss and a death wish. Me? My name is Michael. I am 57. I have heart disease, COPD, gallstones, bi-polar disorder and major depression. I have had one major heart attack, two divorces, three misdemeanors and several failed suicide attempts.
Because of my mental illnesses, character flaws or sheer idiocy I have either quit or failed at almost everything I have set my hand to thus far in my life: marriages, relationships, filial obligations, parenting, careers, businesses, therapy, suicide, hobbies, friendships, religions, and a host of things that most people accomplish seemingly without effort and usually without remark. Despite my untenable resume, character flaws and the multitude of red flags waving briskly in the wind, I am their caregiver. I am their 24/7/365 live-in attendant, companion, private nurse, therapist, chauffeur, banker, concierge (and now part-time raconteur) in this house of trepidation and habitat of hope.
I know very little about blogging. To be honest, I have never even read a blog. So bear with me. I have tried my hand at journaling and keeping a diary in the past, but I lacked the self-discipline to write consistently enough to record my thoughts to be of any value literarily, therapeutically or historically.
This blog will be a chronicle of my final exam and of my parent’s struggles with their infirmities, angst, fears and mortality. My hope is that my efforts at care giving will somehow silence their unspoken disappointments in me and attenuate their anguished psychic memories of me that even their Alzheimer’s disease cannot completely erase. It is the final opportunity of the prodigal son to be successful at something.
Thus, their care is not just the topic of yet another blog; it is my life and maybe, just maybe, my redemption. It is, in essence, my final exam as their son. Pass or fail.
Saturday, April 18, 2009
The genesis of "There's Hobos in the House"
Last night I was suddenly awakened by my father’s plaintive cries for help. Quickly I ran to his aid when I heard him shout "STOP. You're under arrest". Momentarily stunned, I paused and cautiously peered around the corner not knowing what to expect. Seeing no one but my father lying in bed, I asked him what was wrong. Excitedly he told me that “there's hobos in the house, there's hobos in the house”! I didn’t call 911 or even search the premises further. It’s not that hobos in the house should be so easily dismissed, but my Dad suffers from dementia and occasionally has both audio and visual hallucinations.
In the decade of the 60’s my father, like most men of his generation, was very strict, very conservative and very anti-drug, while as a teenager I spent most of my time rebelling against his values, dropping out of high school and later squandering my limited funds on drugs, including hallucinogens. At 18 my diminutive world came tumbling down when I was arrested and jailed for possession of LSD. Now, 40 years later, Dad is imprisoned by his dementia and his titan universe has been shattered. Ironically, our roles have been reversed. Now I’m the parent and he's the child. I’m now the anti-drug champion and he is the one hallucinating marauding hobos in the house.
In the decade of the 60’s my father, like most men of his generation, was very strict, very conservative and very anti-drug, while as a teenager I spent most of my time rebelling against his values, dropping out of high school and later squandering my limited funds on drugs, including hallucinogens. At 18 my diminutive world came tumbling down when I was arrested and jailed for possession of LSD. Now, 40 years later, Dad is imprisoned by his dementia and his titan universe has been shattered. Ironically, our roles have been reversed. Now I’m the parent and he's the child. I’m now the anti-drug champion and he is the one hallucinating marauding hobos in the house.
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