Instantaneous annihilation by a massive object from space seems like a merciful death compared to losing oneself day by day, moment by moment, in the passageways of your own mind. Okay, it’s not an asteroid, but what’s coming is just as bad, if not worse. I’m talking, of course, about Alzheimer’s disease, and for more than five million people the asteroid analogy is too late; it’s already struck with a vengeance. The result is nearly $200 billion a year in medical expense, with more than 15 million people acting in the capacity of unpaid caregivers. If we felt the full impact of these conditions at once, instead of gradually over many years, the collective gasp of anguish would drown out most other concerns.
Alzheimer’s brings with it a gift of guilt that keeps on giving, because there are no satisfactory solutions. If you take care of family members with the disease, you feel guilty. If you find them a great place to be cared for, you feel guilty. It’s what this disease does to your family members that causes guilt to follow your every decision because, no matter which option you choose, things always get worse. In terms of the cost of stress, Alzheimer’s is off the charts for both victims and caregivers. Both are wounded. Caregivers live shorter lives because of the emotional toll. My grandmother took care of my grandfather at home, and the cost to her own health was enormous.
My asteroid metaphor is especially appropriate because of what our demographics tell us is to come. In 2050 our gray asteroid goes from $200 billion to an estimated trillion dollars or greater, and the cost in individual anguish escalates by orders of magnitude that we are barely capable of imagining. If this disease were something for which a company could be considered liable for causing, the punitive damages in a court settlement would likely be for an amount too great for us to comprehend because not even our government counts that high.
Now, consider what steps we would be taking if we were dealing with a real asteroid whose orbit would, at some future date, bring it in direct contact with the earth. Our efforts, of course, would depend to a degree on its size. An object large enough to be considered a planet killer would be viewed differently than one that would only portend local destruction in the immediate vicinity of where it hit.
Alzheimer’s by any measure is a seismic global event. Moreover, it’s only one disease that increasingly affects an aging population. There are many kinds of dementia that are hard to distinguish from one another, as well as some medical treatments that actually cause symptoms that mimic Alzheimer’s. A few years after my grandfather’s death at the age of 92, I learned that a conflict in his medications was very likely responsible for at least some, and perhaps all, of his dementia. And I have no reason to doubt that many aging people today who are under the care of more than one physician are still given conflicting medications because of the pace and economics of medical practice in America.
In his book The World Until Yesterday: What Can We Learn from Traditional Societies, Jared Diamond writes about visiting a village on the Fijian island of Viti Levu. While he was there, an islander accused him of being from a country where we throw our old people away, referring to the fact that we often put our family members in retirement or nursing homes. Diamond also tells us about cultures where the old are killed or abandoned as a matter of what is considered economic necessity.
As for Americans, he writes, “Care for the elderly goes against all those interwoven American values of independence, individualism, self-reliance, and privacy.” I suspect that it is no small part of this ethos that adds to our guilt, no matter what actions we take with our aging parents and relatives. Guilt is often an overt expression of the exasperation that comes from feelings of utter helplessness.
And yet, every time we try to have a serious public discussion about the end of life, there is a chorus of political vitriol about death panels. Speaking only for myself, I would rather die a violent and painful death than be among those I could only identify as strangers, while being angry, confused, and existentially lost for what could amount to years somewhere in the shadowy corridors of my own mind.
Long before we experience the full effect of the gray asteroid of 2050, we need to find a way to let individuals decide for themselves whether they want to end their lives under medical supervision when their minds are gone and there is absolutely no hope for recovery. I suspect if the Fiji Islanders knew more about our society, they would declare that we often show more compassion for our pets than our old people.
The statistics are truly frightening. One in eight people over age 65 has Alzheimer’s, and nearly half of us who reach the age of 85 will suffer its ravages. There are some hopeful signs in medical research for ways to fight Alzheimer’s, but nothing close to a cure or prevention as of yet, and the asteroid gets closer every day.
The Obama administration is setting an ambitious goal for having an effective treatment for Alzheimer’s disease by 2025. Their budget, unfortunately, doesn’t measure up to the gravity of the challenge, but if they try to invest more money in the effort, we surely can expect more filibusters on the horizon.
In the meantime, if I get Alzheimer’s, I would rather that the money required to keep my body alive go instead to looking out for young people. How about you?
Charles D. Hayes
Saturday, 6 April 2013