Posted on 05/24/2012 3:45:28 PM PDT by wagglebee
A very disturbing article in New York Magazine by Michael Wolff. It tells the difficult story of his mother’s Alzheimer’s, a course of physical and mental decline about which I am very familiar as my uncle died from the complications of that awful disease. But Wolff says that such patients have lost dignity, and indeed, he more than implies the proper approach to dealing with dementia is to kill them sooner rather than bear the emotional and financial expense of caring for them over the long term. From, “A Life Worth Ending:”
It is peaceful and serene. Except for my mother’s disquiet. She stares in mute reprimand. Her bewilderment and resignation somehow don’t mitigate her anger. She often tries to talk—desperate guttural pleas. She strains for cognition and, shockingly, sometimes bursts forward, reaching it—“Nice suit,” she said to me, out of the blue, a few months ago—before falling back.
That is the thing that you begin to terrifyingly appreciate: Dementia is not absence; it is not a nonstate; it actually could be a condition of more rather than less feeling, one that, with its lack of clarity and logic, must be a kind of constant nightmare. “Old age,” says one of Philip Roth’s protagonists, “isn’t a battle, it’s a massacre.” I’d add, it’s a holocaust. Circumstances have conspired to rob the human person–a mass of humanity–of all hope and dignity and comfort. When my mother’s diaper is changed she makes noises of harrowing despair–for a time, before she lost all language, you could if you concentrated make out what she was saying, repeated over and over and over again: “It’s a violation. It’s a violation. It’s a violation.”
Often, the people who really suffer in Alzheimer’s cases are the loved ones. I know we did. It is very hard to see your formerly vibrant and interactive mother, father, uncle, spouse, so ill and vulnerable. But they are not without dignity–unless we so define them. Their hygiene needs do not reduce them to something less human.
The family chose to accept some high end interventions–which no one forced on them. But those are tough calls too, so no judgment there. And here’s the call to killing:
I do not know how death panels ever got such a bad name. Perhaps they should have been called deliverance panels. What I would not do for a fair-minded body to whom I might plead for my mother’s end. The alternative is nuts: to look forward to paying trillions and to bankrupting the nation as well as our souls as we endure the suffering of our parents and our inability to help them get where they’re going. The single greatest pressure on health care is the disproportionate resources devoted to the elderly, to not just the old, but to the old old, and yet no one says what all old children of old parents know: This is not just wrongheaded but steals the life from everyone involved.
And it seems all the more savage because there is such a simple fix: Give us the right to make provisions for when we want to go. Give families the ability to make a fair case of enough being enough, of the end’s, de facto, having come…My bet is that, even in America, even as screwed up as our health care is, we baby-boomers watching our parents’ long and agonizing deaths won’t do this to ourselves. We will surely, we must surely, find a better, cheaper, quicker, kinder way out.
Yes indeed, for Baby Boomers, it is always about us.
My uncle was helpless at the end, his condition made more difficult by serious glaucoma added to the travails of dementia. But he was not undignified. Indeed, I would posit he had a greater claim on our love, commitment, and care than when he was a vigorous activist in the Teamster’s Union. And the people who cared for him at a wonderful Baptist continuing care home could not have been more committed to their patients’ well being, cleanliness, and comfort.
We already have the right to refuse unwanted medical treatment. Before becoming incompetent, my uncle made it clear that he did not want heroic measures or antibiotics at the end, and as his surrogate, I made sure he did not receive them. But his was not a life worth ending, it was a life worth caring. And that is precisely what my uncle received, individualized and loving attention until his time had come.
But there is an agenda afoot to get us to die sooner rather than later. So the caring story does not seem to be one that big time media is much interested in telling.
Absolutely beautiful.
Thank you for this post.
You are correct, and I am eating a big ol’ bowl of crow.
My bet is tens of thousands have imagined the scenario you’ve presented and several hundreds have plans to execute it.
This is pretty much the mentality of Germany in the 1930s. They thought they were so hip and trendy to “cleanse” themselves of “undesirables.” Tyranny is always with us (humans never change), instead the tyranny manifests itself in different ways at different times. The next holocaust will be administered under the guise of helping “mother earth” and creating another one of LBJ’s “great societies.” It will be administered insidiously, so that nobody will even know it even happened.
What a wonderful post! My husband died a few months ago from Alzheimer's. He had it for 10 years. As his sole caregiver, he taught me so much about myself, or rather, how to better myself. We used to bicker and banter back and forth, but not once did I raise my voice to him during all that time. Not once did I complain when he had "sundowners", when he was up all night,or when I changed his adult diaper, or showered him, or fed him. The last three or four years, he was like an infant, but I still talked to him as my husband. It was difficult, the hardest thing I ever did, but I always treated him with respect.
The last three months of his life, he became violent when I would attend to his needs, and I had to put him in long term care. Since I had formerly worked in the field, both of us knew the nurses, and they treated him with kindness. It was near my home, so I visited daily. He didn't know me, but knew I was the one who took care of him...most of the time. Some days, he would laugh and chatter incoherently, and I or the staff would laugh and talk with him, as though we knew the conversation. He was comfortable, and happy, at least I think so.
The toughest part was, I knew he didn't want to live like that. When his dementia began, he threatened to kill himself, and told me he'd rather be dead. I sometimes felt guilty by keeping him healthy and alive, but by then, he had no clue about his disease. He died in my arms on Feb. 11. As he lay dying, I kept telling him how much I loved him, and that his family was there and they loved him. Over and over, I repeated those words, until he took his last breath.
I have no regrets, and would do it all again if I could. So many people have told me to start living again, to do things, and enjoy life, since so much was taken from me. But, he was taken from me, nothing else. I don't know what can be learned from my post, but hopefully someone reads it, and finds the strength to do the same without feeling deprived. God gave me the strength to do the best thing in my life. He gave me a purpose, and a peace, I never felt before.
I do think a lot of older folks who’ve been independent and strong willed all their lives prefer to pass on than to live in a nursing home. When my father had a stroke, my brother got PoA. Somewhere along the line brother authorized brain surgery. My father said most emphatically: don’t ever authorize that again! Just let me go.
None other than the late (late for Hell that is) Dr. Ronald “Humane Death” Cranford, the neurologist expert witness who helped kill Terri Schiavo and who hadn’t found a patient worthy of life for 20 years before his demise, wrote an article in 1997 along the same lines as Wolff’s.
The article was easily available online until it was pulled during the fight over Terri’s life. It seems nobody in the “Kill Terri” camp wanted it known that their expert witness was a murderous quack.
I was able to salvage the article, it is below in its entirety:
COMMENTARY: WHEN A FEEDING TUBE BORDERS ON THE BARBARIC
Ronald Cranford
May 28, 1997 CRAN28
Just a few decades ago cases of brain death, vegetative state, and locked-in syndrome were rare. These days, medicine’s “therapeutic triumphs” have made these neurologic conditions rather frequent. For all its power to restore life and health, we now realize, modern medicine also has great potential for prolonging a dehumanizing existence for the patient.
We realize this, and we’re starting to deal with it. In landmark legal cases from Karen Quinlan to Nancy Cruzan, society has come to see that it’s sometimes sensible to stop treatment in patients lingering in permanent vegetative states (PVS). That progress has been hard-won and welcome. But anybody who thought that the dilemmas of PVS were troublesome hasn’t seen anything yet.
The United States has thousands or tens of thousands of patients in vegetative states; nobody knows for sure exactly how many. But before long, this country will have several million patients with Alzheimer’s dementia. The challenges and costs of maintaining vegetative state patients will pale in comparison to the problems presented by Alzheimer’s disease.
Since women now live much longer than men, and since Alzheimer’s is a disease of the elderly, most of these patients will be female. Many will spend their last years largely unaware of themselves or their surroundings.
If people really understood the reality of this dementia, I doubt they’d find it an acceptable lifestyle. Being in a state of wakeful oblivion for five to 10 years or sometimes longer is a degrading experience. The degradation is borne not so much by the patient, who may be completely unaware of him- or herself, but by the patient’s family. They must endure the agony of seeing a loved one lying there year after year, often sustained only by a feeding tube.
Just as we’ve tried to come to grips with appropriate care of PVS patients, we’ve got to confront the dilemma of dealing with the demented. Comfortable solutions aren’t easy to find.
So much in medicine today is driving the public towards physician-assisted suicide. Many onlookers are dismayed by doctors’ fear of giving families responsibility in these cases; our failure to appreciate that families suffer a great deal too in making decisions; our archaic responses to pain and suffering; our failure to accept death as a reality and an inevitable outcome of life; our inability to be realistic and humane in treating irreversibly ill people. All of this has shaken the public’s confidence in the medical profession.
People fear becoming prisoners of medical technology, and their fears are largely justified. When medicine and society refuse to face up to tough questions of treatment and honor individual values, physician-assisted suicide and active euthanasia start to look like the only open exits.
Consider, for example, the case of Jamie Butcher — a young Minnesota man of 34 who spent half his life in a vegetative state. After tending his inert body for 17 years, his parents finally made the heartbreaking choice to let him die. You couldn’t find two more loving, caring, intelligent parents than Jim and Pattie Butcher. Their decision to remove Jamie’s feeding tube should have been relatively simple — and entirely private. But right-to-lifers and some disability groups fought the Butcher family every step of the way, assailing their legitimate choice to withhold futile treatment as an act of euthanasia.
This is just the sort of inflammatory talk that threatens to drive society down the path towards physician-assisted suicide. Medical organizations, courts and other groups generally agree that there are some important distinctions between stopping treatment and acting to cause a patient’s death. By insisting that withdrawing a feeding tube is akin to euthanasia, these special interest groups are undermining their credibility.
And they’re creating unnecessary confusion for the growing numbers of families losing a loved one to Alzheimer’s. Vegetative state cases are not nearly as numerous as cases of Alzheimer’s. But both kinds of cases force families to mull over the same question: When the human brain is so badly damaged that its owner can no longer think or even eat, what should be done?
This is a question families should feel free to answer for themselves — without fearing intrusion from outsiders. And when you really think about it, the idea of placing a feeding tube in a patient with advanced Alzheimer’s disease makes no sense at all, medically or morally. It borders on barbaric and cruel. It’s just the kind of dehumanizing medical intervention that the public finds so distasteful. It’s the sort of practice that undermines confidence that doctors have the best interests of patients and families at heart.
In Europe, feeding tubes are rarely seen in nursing homes. Once a patient is so severely brain-damaged that only artificial nutrition can sustain life, many doctors and families rightly ask, “What’s the point?” In many civilized countries, the question wouldn’t be asked — because placing a feeding tube in someone with end-stage dementia wouldn’t even be considered.
But here in the United States, many caregivers wouldn’t consider not placing a feeding tube in the same patients.
It’s hard to understand why. If we want our loved ones to live and die in dignity, we ought to think twice before suspending them in the last stage of irreversible dementia. At it is, it seems that we’re not thinking at all.
— Ronald Cranford, of Bloomington, is a neurologist at Hennepin County Medical Center and a faculty associate at the University of Minnesota’s Center for Biomedical Ethics.
See also: Obamacare Death Panels
I have no regrets, and would do it all again if I could. So many people have told me to start living again, to do things, and enjoy life, since so much was taken from me. But, he was taken from me, nothing else. I don’t know what can be learned from my post, but hopefully someone reads it, and finds the strength to do the same without feeling deprived. God gave me the strength to do the best thing in my life. He gave me a purpose, and a peace, I never felt before.
___________________
I stand humble before you and your courage.
I bet you would find the same courage if the need arose. It's the last thing I ever thought I would do because I was a get-up-and-go person. When I first found out he had Alzheimer's, I checked out home care workers, but found out real quick I didn't like leaving him with strangers. My sister, who is also a nurse, would drive to my town, and watch him while I shopped, but then, I was always anxious to get back to him. Every person is different, and every Alzheimer's patient is different, so with the varying circumstances, each caregiver must evaluate what is right for him or her. Long term care should be the last resort, unless the caregiver just can't cut it. It is just too hard for some people to cope with, and I don't fault them.
How wonderful that you could see God’s gift to you through what most of us would consider a hardship. If faced with that challenge, I would hope for your attitude. God bless you.
I have no regrets, and would do it all again if I could. So many people have told me to start living again, to do things, and enjoy life, since so much was taken from me. But, he was taken from me, nothing else. I don't know what can be learned from my post, but hopefully someone reads it, and finds the strength to do the same without feeling deprived. God gave me the strength to do the best thing in my life. He gave me a purpose, and a peace, I never felt before.
Thank you for a wonderful and inspiring testimony.
Psa 121:1 I will lift up mine eyes unto the hills, from whence cometh my help.Psa 121:2 My help [cometh] from the LORD, which made heaven and earth.
Why did you add “Wesley J. Smith” to the title.
I don’t see mention of him in the link title or the story.
Thank you. During our time together, we took each other for granted too often. When he was ill, he relied on me 100%. He followed me around like a little puppy, and he totally loved me. I became his world. How many women or men have that? He actually became an extension me. Even my babies demanded some independence, but he wanted none of that. Even as he slept, I had to touch him somewhere, so he would feel safe. Not many adults have that, and I had a choice to embrace it, or become repulsed. Like I said, I did one helluva lot of praying then, and it has become a habit, so good did come of it.
Thanks to all of you for the kind words. Jaidyn, thank you for telling us about your husband.
Most of the families I’ve known who have had to deal with family members with severe problems have become even more wonderful people through the experience.
“...we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.” Rom 5:3-5 NASB
“Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.” James 1:2-4 NASB
These all have been true in the life of the lady I quoted.
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