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Alzheimer’s

I apologise to anyone who has been waiting for me to post something new. I hope the following will help explain my neglect.

 

 

Endgame
Patrick Guntensperger
            This old guy walks into his doctor’s office to get the results of some tests. The doctor says, “I have some bad news and some worse news.”
            “Wow!” the old guy says, “Tell me the bad news first.”
            “Okay,” the doctor says, “you have cancer. It’s of a particularly painful kind and it’s usually terminal. I’m very sorry.”
            “Wow!” the old man says. He puts his head in his hands for a while then he looks up and asks, “Well, what’s the worse news?”
            “I’m very sorry, but you also have Alzheimer’s. That, I’m sorry to say, is always terminal.”
            The old man holds his head in hands for a while, then looks up and says brightly, “Well, at least I don’t have cancer!”
My Dad doesn’t have cancer.
***
After having lived for the better part of a decade in Jakarta, I came back to Canada because my parents, both in their eighties, wanted to meet my newly adopted baby, JJ. I knew they were getting a little frail and, my father particularly, getting a bit forgetful. What the hell; they’re old, that happens.
Before we had waded all the way through the bureaucratic morass to try to get my wife and son out of Indonesia and into Canada, the situation was worsening. I had to leave my family in Indonesia, and come here to take care of my parents. My wife, Yolanda, will pursue the paperwork in Jakarta with my son, JJ, while I do what’s needed here on Vancouver Island.
Shortly after I arrived, my mother had a health crisis, and her kidneys shut down. As I write this, she’s in the hospital in Nanaimo, a city about 25 kilometres south of here, while I take care of my father. This time I’m spending with my father is about the most heartbreaking I’ve ever had, but at the same time there’s a bittersweet shadow over the experience; there is a touch of joy that comes from giving a little bit back to someone who has given me so much. And there is real sweetness in getting to know someone I thought I knew thoroughly.
My father, you see, has Alzheimer’s. Not a little forgetfulness, as I had been led to believe, but serious dementia.
Alzheimer’s is a brutal disease. It’s degenerative, and it’s always fatal; the mean life expectancy from the time of diagnosis is about seven years. As it progresses, which it inevitably does, it robs the sufferer of dignity, and any pleasure or joy of life. Cruelly, it most commonly strikes people in their mid-sixties, imposing a terrible burden on the victim’s spouse, who, typically, is also elderly. By the time the patient slips into the final stage before death, which is a certainty, there is little left of the former personality; the patient might not even recognise the caregiver, and is unable even to feed or bathe him or herself. A diagnosis of Alzheimer’s is a sentence to death by slow torture.
Julian Guntensperger was born on December 21, 1926. He was the son of a Swiss Ph.D. who was at the time the Dean of Sciences at Laval University in Quebec City, and of an Irish/Scottish mother, who was a bookkeeper at the Royal Bank of Canada. He was brought up during the Great Depression and, while still in high school, he enlisted in the militia at the outbreak of World War II in 1939. He enlisted in Canada’s regular army as soon as he became eligible at the age of eighteen; he was a corporal in the infantry, heading for the Pacific on a troop ship, when news of the atomic bomb blasts in Japan came down.
After he was mustered out, my father took a degree in forestry engineering at University of New Brunswick and became a forester upon graduation. While in hospital after having been injured in the woods, he met a beautiful young French Canadian nurse and determined on the spot that he would marry her. Such was his determination and their mutual infatuation that they were indeed married soon thereafter and, after a few idyllic years of deep bush country life, Dad decided that he would re-enlist in the armed forces and become a career military officer. This time, the RCAF (Royal Canadian Air Force) was mounting a recruiting drive, and they jumped on his application.
Mom and Dad in happier times

Four children and an exciting career as a Cold War Air Force officer with postings to radar stations in Europe were the result, and Dad took early retirement in the early ‘sixties to start a new career as a business executive. He went from managing an international airport to a two year stint as a senior organiser for Expo ‘67 in Montreal during Canada’s centennial celebration, then on to an outstanding career in shopping centre development, pausing for a couple of years as a bank vice-president, and then finally retiring as a consultant in commercial property development. Retired, he took up and subsequently became a teacher of Tai Chi, and had fiery career as a local representative for the small community of Gabriola Island in the Georgia Strait, off Vancouver Island. He left the island after a decade or so and moved to Victoria where his wife of over 50 years, my mother, Lucille started to notice occasional forgetfulness. He wasn’t diagnosed yet, but he had Alzheimer’s.

Here in Parksville, where we now have a house that has been modified for assisted living, my father and I spend 24 hours a day together. My mother is expected to be home soon, as soon as they can cure the pneumonia they discovered when she was admitted with kidney failure, and I hope every day for success in Yolanda and JJ’s quest for documents to get them here from Jakarta. Meanwhile, I’m getting to know my Dad all over again.
It’s not the old, dynamic, and indefatigable Dad; now he has long stretches of lethargy, and the apathy that is characteristic of Alzheimer’s needs to be fought every day. He has very little short term memory left; each day as we drive down to see my mother in the hospital, he makes the same remarks at the same places on the road; he relates the same anecdote sometimes as many as three or four times in the twenty minute drive, and he asks several times a day where Mom is.
Nevertheless, I’m relearning what a decent, kind, and tough guy my father is. Even though he walks with a cane in a slow shuffle, he holds doors open for others; he pauses to chat with little children, most of whom appreciate the effort; he apologises for the work his disease puts others to. Even though he is aware that he has a fatal disease, a sentence from which there is no reprieve, he faces each day as a new challenge. Although he knows that he will never get better – he will, in fact, get worse each day – he summons his determination and gets on with it; even as his resources, his strength, and his once formidable brain power abandon him.
He knows that he will deteriorate until he dies; there is – for him, at any rate – no hope of recovery. Even if the religious right, which has effectively thrust a stick into the spokes of the best hope for finding a cure for Alzheimer’s (and Parkinsons, multiple sclerosis, amyotrophic lateral sclerosis, and half a dozen other neurological diseases) were suddenly to come to their senses and stop demonising stem cell research, it’s almost certainly too late for my Dad. No, like every other sufferer of Alzheimer’s he will die, and he knows he will die, in a cruelly undignified manner. Nevertheless, he gets up each morning and fights for another day of lucidity.
He sleeps a lot; this is a relief for both of us. For him it’s a bit of a respite from the constant struggle to remember, to stay cheerful, to face a grim future. For me, it’s an opportunity to slip out and get some groceries or other necessities, to mop floors, or to do laundry; I’m writing this during a short nap he’s taking.
But sleep is also a curse. We both know his days are numbered and he hates to sleep through the few he has left; even more poignantly, he is aware that every time he sleeps, he is likely to wake up just a little bit more affected by this disease. He never knows which of his naps will see him awaken to a world in which I and, worse still, my mother, his beloved wife of nearly sixty years, will be a stranger.
For now we make the most of the time we have together. I help him bathe, then I prepare his breakfast; I help him dress, then together we go visit his wife in the hospital. After a few hours we drive back home, each time with my father asking where we’re going. My mother brightens visibly when he walks into her room, but cries when she finds herself having the same conversation with him every day. She never knows if this visit will be the last one, or the last one at which he will recognise her.
After My Dad has lunch, he is usually exhausted. After I answer his bewildered “Where’s Mom?” several times, I give him his meds and he lies down to sleep. He usually gets up in the early afternoon and wants to do something physical, so we spend some time getting his outdoor clothes on, and he goes to the back yard to rake leaves or otherwise putter about while I watch like an anxious parent from the kitchen window. Occasionally he starts to panic because he doesn’t know where he is. We’ve only been in this house a short time, so the memory of this place hasn’t been etched in.
 After a brief stint in the fresh air he comes in while I cook and we converse by shouting from one room to the other while he watches television until an early supper. In the evenings, we chat a little, but his spirits tend to sink as his energy wanes. We’ll have a beer and watch a hockey game or something else that’s lively – he can’t watch a whole movie because he loses the plot after about ten minutes – and maybe chat a little.
Our chats often consist of my father repeating an anecdote about when I or my brother or sisters were little children. These anecdotes are almost always about something bright or funny or triumphant we did and, because they come out as word-for-word repetitions, I know they’re etched deeply into his memory, and are incidents that he has thought about often over the years. I listen to him telling me for the twentieth time about my little sister’s first steps, taken immediately upon disembarkation from the passenger liner that took us to Europe in 1959, and my eyes fill with tears.
Dad will go to bed early. I’ll lay out his pyjamas, help him into the bathroom to brush his teeth and then help him dress for bed, ensure he has a book to read, and give him his night time meds. And like he did for me when I was a little boy, I tuck him in and assure him that everything’s going to be just fine. We both choose to ignore the fact that somewhere inside of us; we both know that whatever kind of day we had tomorrow is going to be just that little bit worse. His last words before I leave him to read or to sleep are invariably, “Where’s Mom?”
Julian Guntensperger is a particularly good Alzheimer’s patient. He came to the party as a powerful, intelligent, and self-confident man. So far these characteristics are still in play. He is strong enough to look this curse in the eye and persevere. He is intelligent, and his intelligence has not diminished along with his memory, so he understands what’s happening. His self-confidence allows him to confront this brutal disease without pretending it’s not happening.
He’s my father and I’m watching him die.
Normally in this type of article, the piece closes with a few helpful hints as to how to prevent the disease, on new cures, or ways to alleviate the effects. Sadly, I can’t offer any of those. Nobody can say what causes Alzheimer’s; there is no way of predicting it, preventing it, or curing it. There aren’t even any medical ways of alleviating the symptoms. For those who have been diagnosed, all that remains ahead is an increasingly bumpy road until the relief that a death surrounded by loved ones may bring. But for those of us who are alive and undiagnosed, there is only one direction that research suggests might lead to a cure. Stem cell research. And that road is being blocked.
Until compassion and wisdom enters the souls of those who would prevent millions of people worldwide with neurological diseases or trauma from being treated there is little hope for people like my Dad. So, to close, I can only offer this bit of advice to those who have a loved one who is diagnosed with Alzheimer’s. Love that person, share as much time with him or her as you can, get to know what makes him tick, record what you can for a legacy. And, as the personality is being slowly and systematically dismantled, focus on the great moments before the sentence of death was passed.
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Dylan Thomas
 I love you, Dad.

…enditem

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Comments

  1. Hello!
    I knew your dad when he lived on Gabriola – truly a brilliant fellow! As hard as it probably was, thank you for your posting – I often wondered what became of him after he left our island. Best wishes in the long journey you have ahead of you.
    Tracie

  2. Thank you, Tracy. You're very kind.

  3. Carole Wilson says:

    I worked as a secretary for your father at Expo 67. He was a nice man, good natured, liked by the people he dealt with. I remember his story of you or your brother going to school and being asked to spell your surname. “Spell it, I can’t even say it” was the reply. I would hear about your family of four children. I am the oldest of four. Your mother gave me the recipe for a French Canadian dish, (I am English) Tortier I think it was. My father, who is the same age, came to visit Expo and met your father. I was so distressed to read your note of 2010. May I ask about your parents.
    Kind regards, Carole

    • How wonderful to hear from you, Carole! We have met, if you care to remember that far back, and I remember you fondly. Having been very close to my father, I know how you and he got on; you were one of the truly bright spots in his life. He spoke openly to me of you often.

      in 2009 I was living in Jakarta and my wife Yolanda and I had just adopted a baby boy when I began to become concerned about the tenor of the emails I was receiving from my parents. I accordingly made arrangements to buy a house near where they had retired and came back to care for them, expecting my wife and baby to join me quickly thereafter.

      Things didn’t work out that way however. The adoption hit some snags (my wife is in court at this very moment in Jakarta seeing a judge to issue the final papers…3 years later. while I wait on tenterhooks in a nearby bar), and in Canada it was obvious that my father had advanced dementia, far from the mild forgetfulness I had been led to believe was his only symptom of Alzheimer’s. My mother had a persistent cough and early stage Alzheimer’s.

      I stayed and cared for them while my wife alternately spent three months in Canada helping me care for them and then three months in Indonesia with our son JJ trying everything to get him out. My mother turned out to have stage 4 lung cancer (she had never smoked) and passed away about 5 months after the diagnosis. By then she was in constant pain and completely delusional as a result of the combination of consuming more narcotics than Keith Richards could have imagined in his wildest fantasies, and galloping Alzheimer’s. She had left a living will and, following her wishes, I had the life support removed when the time was appropriate.

      My father lived for another five months; the first question he asked me each day was “Where’s Mom?” Finally one morning after I had bathed and dressed him, he wanted to lie down to rest before I helped into the kitchen to give him his breakfast. I helped him to bed, he lay back and said, “God, I’m tired”, closed his eyes and died.

      I miss them both terribly and recognise them for their few flaws and many virtues. I also want to express my gratitude to you personally and, on behalf of my father to send you his fondest wishes. As I said…I know how he felt about you.

      With my very best wishes, I encourage you to stay in touch if you feel so inclined , and I remain,

      Yours very truly,
      Patrick

      (Pagun)

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