Del Monte Beach photo'd by GG
The Alienation of Alzheimer’s Disease
We learn something new from each emerging challenge in life. Hopefully, we become more empathetic, and not bitter, when these changes present themselves.
The diagnosis of Alzheimer’s requires that caregivers quickly “get up to speed” and learn as much about the ramifications of the disease as possible. Dementia is usually a slow moving and insidious disease, often taking years of subtle changes to manifest itself. It’s not like a light switch that one flicks on and off, where clarity is visible at one moment, and darkness and oblivion take over the next. The disease can creep up on a family quite unexpectedly, rather like a slow leak that no one notices, until the boat starts to take on water.
In Dad’s case, he appeared quite normal in habits and thoughts (“sharp as a tack” his doctor said) for approximately 80 per cent of the day, but during the remaining 20 per cent, and often when he was tired or stressed, he could walk by his own car parked in front of his house and not recognize it, or even find his way home, following a short trip downtown.
Therefore, I was puzzled, or, to be honest, hurt, when Dad was initially diagnosed. Anticipating support and encouragement from friends, I was dismayed and eventually offended by their reactions. As soon as the diagnosis was confirmed by his doctor, Dad, and in turn, his family caregivers became a pariah.
My cousins flat out declined to visit their uncle. Step siblings and in laws treated him as if he were an imbecile at best and a criminal at worst.
When Dad came to live with me for a few weeks, my friends avoided visiting my home as if I had been quarantined with the plague.
“Does he recognize you?” one asked when I called to invite her over. “Of course he recognizes me!”
“Can he feed himself?” along with hints about the “diaper question” came from another, while all the while Dad remained as dapper and well groomed as ever, with no help from me.
It quickly became apparent that even among friends of my generation, whose own parents are also octogenarians, a huge gap of knowledge remains regarding the symptoms and treatment of dementia patients.
Perhaps the public perceives that as soon as the diagnosis is made, the patient deteriorates into a listless, drooling fool, when in fact, the initial symptoms may appear to be quite vague. Many patients, including those who have spouses who “coach” (“did you check to make sure you took the tea pot off the stove, Dear?” or “enable” them may live with a “limbo” of symptoms for years, until Alzheimer’s eventually deteriorates into the all-encompassing disease that we fear.
Indeed, it appeared that Dad, in conjunction with his wife as his enabling partner, was living with dementia, and conducting his day to day life, symptoms unnoticed by friends, family, neighbors and the general public, for many years, until a traumatic chain of events, occurring when his beloved wife was hospitalized due to cancer, and his rapid loss of savings to pay for her care, caused his behavior to change.
Therefore, my personal support system, as caregiver/daughter, was non existent. In situations like this alienation quickly sets in. As a cancer patient, I know this feeling all too well. I have no doubt that other patients affected with chronic diseases share this same experience.
Has Alzheimer’s disease become the new AIDS? Is the public fearful they can “catch” it, simply by offering a supportive telephone call, or making a friendly visit?
Would I treat friends or cousins in this manner, were their parent the one diagnosed? Would I remain distant, avoiding them when they needed me the most? I have to step back and ask myself these questions as I examine my own values.
To be honest with myself, I too would be ignorant, perhaps even fearful of the diagnosis. I would initially pause before offering support and might even couch my hesitation and distaste by excusing myself saying “I don’t want to intrude on your privacy at this time” using the same lame reasoning that had been offered to me.
Whatever my level of ignorance or misunderstanding about dementia might be, I would take a few minutes to research the topic, as is so easily done via the internet these days, and would at the very least, offer supportive telephone calls and note cards, if visits were not attainable.
We can overcome many fears if we support one another during troubled times. I try to use this experience with Dad as a lesson to teach me to have more empathy for others.
An excerpt from Where the Red Tailed Hawk Flies: Daddy Has Dementia and from Where the Red Tailed Hawk Flies: Healing for the Heartbroken Copyright © 2010 by Red Tailed Hawk Publishing/Gabriella Graham/All rights reserved.
.
We learn something new from each emerging challenge in life. Hopefully, we become more empathetic, and not bitter, when these changes present themselves.
The diagnosis of Alzheimer’s requires that caregivers quickly “get up to speed” and learn as much about the ramifications of the disease as possible. Dementia is usually a slow moving and insidious disease, often taking years of subtle changes to manifest itself. It’s not like a light switch that one flicks on and off, where clarity is visible at one moment, and darkness and oblivion take over the next. The disease can creep up on a family quite unexpectedly, rather like a slow leak that no one notices, until the boat starts to take on water.
In Dad’s case, he appeared quite normal in habits and thoughts (“sharp as a tack” his doctor said) for approximately 80 per cent of the day, but during the remaining 20 per cent, and often when he was tired or stressed, he could walk by his own car parked in front of his house and not recognize it, or even find his way home, following a short trip downtown.
Therefore, I was puzzled, or, to be honest, hurt, when Dad was initially diagnosed. Anticipating support and encouragement from friends, I was dismayed and eventually offended by their reactions. As soon as the diagnosis was confirmed by his doctor, Dad, and in turn, his family caregivers became a pariah.
My cousins flat out declined to visit their uncle. Step siblings and in laws treated him as if he were an imbecile at best and a criminal at worst.
When Dad came to live with me for a few weeks, my friends avoided visiting my home as if I had been quarantined with the plague.
“Does he recognize you?” one asked when I called to invite her over. “Of course he recognizes me!”
“Can he feed himself?” along with hints about the “diaper question” came from another, while all the while Dad remained as dapper and well groomed as ever, with no help from me.
It quickly became apparent that even among friends of my generation, whose own parents are also octogenarians, a huge gap of knowledge remains regarding the symptoms and treatment of dementia patients.
Perhaps the public perceives that as soon as the diagnosis is made, the patient deteriorates into a listless, drooling fool, when in fact, the initial symptoms may appear to be quite vague. Many patients, including those who have spouses who “coach” (“did you check to make sure you took the tea pot off the stove, Dear?” or “enable” them may live with a “limbo” of symptoms for years, until Alzheimer’s eventually deteriorates into the all-encompassing disease that we fear.
Indeed, it appeared that Dad, in conjunction with his wife as his enabling partner, was living with dementia, and conducting his day to day life, symptoms unnoticed by friends, family, neighbors and the general public, for many years, until a traumatic chain of events, occurring when his beloved wife was hospitalized due to cancer, and his rapid loss of savings to pay for her care, caused his behavior to change.
Therefore, my personal support system, as caregiver/daughter, was non existent. In situations like this alienation quickly sets in. As a cancer patient, I know this feeling all too well. I have no doubt that other patients affected with chronic diseases share this same experience.
Has Alzheimer’s disease become the new AIDS? Is the public fearful they can “catch” it, simply by offering a supportive telephone call, or making a friendly visit?
Would I treat friends or cousins in this manner, were their parent the one diagnosed? Would I remain distant, avoiding them when they needed me the most? I have to step back and ask myself these questions as I examine my own values.
To be honest with myself, I too would be ignorant, perhaps even fearful of the diagnosis. I would initially pause before offering support and might even couch my hesitation and distaste by excusing myself saying “I don’t want to intrude on your privacy at this time” using the same lame reasoning that had been offered to me.
Whatever my level of ignorance or misunderstanding about dementia might be, I would take a few minutes to research the topic, as is so easily done via the internet these days, and would at the very least, offer supportive telephone calls and note cards, if visits were not attainable.
We can overcome many fears if we support one another during troubled times. I try to use this experience with Dad as a lesson to teach me to have more empathy for others.
An excerpt from Where the Red Tailed Hawk Flies: Daddy Has Dementia and from Where the Red Tailed Hawk Flies: Healing for the Heartbroken Copyright © 2010 by Red Tailed Hawk Publishing/Gabriella Graham/All rights reserved.
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