Planet Alzheimer’s

 

images-1How many of you have struggled with Alzheimer’s in a parent or spouse?

I know, from my own journey with my mother, that it can be a horrific experience watching a vibrant and capable human disappear, day by day, before your eyes.

Equally painful is the sense of helplessness … the uncertainty as to how to care for and comfort someone whose emotional and intellectual needs vary from day to day … whose behavior shows no discernible pattern or logic… who “acts out” for no identifiable reason.

Thus, it was reassuring to learn, at a recent seminar in Des Moines as part of the “Embrace Aging” series, that it is possible to make everyday life quite manageable for both dementia victims and their caregivers.

The presenter was Chuck Wurth, a Managing Partner of several retirement communities in the Midwest designed specifically for dementia patients

Living in The Eternal Present

According to Wurth, the loss of memory causes its victims to live in an increasingly eternal present.  As a result, they lose the learned knowledge of cause-and-effect … the memory function that tells us what steps to take to achieve the outcome we want. For example, a dementia patient who is cold may no longer make the connection between getting warm and putting on a sweater or turning up the thermostat.

According to Wurth, dementia patients typically “act out” because they don’t know how to express their needs and/or what to do about it. In his view, meeting the needs of Alzheimer’s patients can be pretty easy … but only if you can figure out what that unmet need actually is.

One approach that Wurth suggested was to take the time … often significant amounts of time … to actually talk to the patient. He offered four checklists—medical, physical, social, and “caregiving”— to prompt specific questions you should to ask in order to discern what the patient needs. “How are you feeling today” just isn’t going to get you the information you need.

Rules of Planet Alzheimer’s

Wurth also believes that the social and caregiving needs of an Alzheimer’s victim are as important as the medical and physical ones: loss of memory does not eradicate the need to be accepted, respected and loved.

Wurth praises the approach developed by Candace Stewart in Welcome to Planet Alzheimer’s.  Stewart uses the metaphor of a different planet, where the language and the rules are different from our everyday world. To communicate with an Alzheimer’s victim, you need to learn their rules:

  • You are not who YOU think you are — you are who THEY think you are
  • Logic and reason do not exist … follow the rules of improvisation and go with the flow
  • Nothing is gained by arguing
  • YOUR truth and THEIR truth are very different … accepting their truth is not the same as lying
  • Never take anything personally
  • Have no expectations
  • Take advantage of the shuttle back to earth at all times … you need to have your needs met as well.

To me, the rules of Planet Alzheimer’s sounded much like interacting with a young child.  According to Wurth, however, you cannot treat dementia  victims like children. They are adults with adult needs, but adults who are have forgotten many of the lessons they once learned.

Wurth insists that caregiving for a friend or family member with dementia can be a rewarding experience—but it takes a very different kind of patience … and a frequent return to the metaphorical planet earth.

If you would like to download Wurth’s four checklists, click here.

Leaning In—To Old Age

 

MCG & KTZ in DingbocheFor several years after my husband and I abandoned our Wall Street careers to sail around the world, I accomplished nothing of economic or social value to anyone.

We rose at daylight, went to bed when it got dark, and aimed our sailboat in whatever direction the wind, weather, and currents allowed us to go. Because there was nothing I had to do and no place I had to be—indeed, most days my biggest decision was what to fix for dinner—I discovered what it meant to simply “be.”

Those years of being rather than doing were the happiest—in the sense of pure contentment—of my life. But my inability to hang on to that sense of contentment in the years since the sailing voyage ended has been a constant source of disappointment.

I rationalized its absence while I was back in the competitive world of high finance, assuming it would re-emerge when I retired. To my dismay, it did not. Even in retirement, I seemed to still be defined by what I accomplished. Co-teaching a comparative religion class at a local university. Chairing the board of a mental health agency. Planning a trip to Rome for Kent’s 75th birthday. Editing a friend’s memoir.

But no matter how much I accomplish, the shadow of old age looms on the horizon. With each passing day, I have a few more wrinkles, a bit less energy, and an ever-increasing list of words that are no longer at the tip of my tongue.

Why am I so determined to pretend I am still in the prime of life?

That is the question at the heart of Daniel Klein’s delightful Travels with Epicurus. In this lovely little tome, Klein revisits the Greek communities he knew as a young man, as well as the philosophers—among them Epicurus—who inspired him to live life well and to the fullest.

Now, in his 70’s, he muses on how the meaning of living life well has changed over 50 years. Throughout this geographic and literary travelogue, Klein asks whether trying to “extend the prime of life into old age” causes us to miss out on what is most valuable about growing old—and being old.

Drawing on the wisdom of his philosopher friends, Klein observes that in old age, you have the freedom to savor every moment for itself rather than what it represents … your friends are companions rather than connections … the person with whom you dine is more important than what you eat.

But, he notes again and again, the ability to savor those moments and those friends depends on your ability to step away from the often self-imposed notion that your worth is based on what you do rather than who you are.

Reading his book was a bit of an epiphany. Over the years, it seems I have put “finding contentment” on the list of all those things I ought to do. Reading Klein, it struck me that if I simply allow myself to grow old—instead of trying to stay forever young—contentment might actually find me.

Are you willing to step out of the stream and lean into old age?

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Health Care — A Curse or a Cure

 

images-1As recently as 200 years ago, if you stopped breathing, you were considered to have died, whatever the cause. There were few scientifically-based options to prevent or delay death.

A watershed moment in the history of health care came with the invention of the stethoscope in 1816 and the ability to register a heartbeat. But scientifically-based treatment protocols remained out of reach. For the next century, death continued to be, as it had been for much of western history, a part of “God’s plan” or—if you were of an atheistic or pagan persuasion—a matter of fate.

Until 1928, that is, when Alexander Fleming discovered penicillin. For perhaps the first time in history, man no longer had to rely on God or fate to determine the outcome of an injury or an infection. Over the last 90 years, our ability to triumph over illness has expanded exponentially.  Today, we can prevent most infectious diseases (even Ebola, it now seems), repair a faulty heart, excise a malignant tumor, or replace a failing kidney.

For much of the 20th century, medical advances focused on preventing “premature” death from infection or trauma. But these often seemingly miraculous discoveries had unintended consequences.  Most notably, our success in preventing or curing acute illness has led to steadily lengthening life spans, but also a greatly expanded population vulnerable to chronic—and costly—illnesses such as diabetes, COPD, cancer or Alzheimer’s.

Another unintended consequence is that the wonders of modern medicine are increasingly used to “manage” or delay conditions that were once considered normal signs of aging, e.g., sagging skin, declining fertility or loss of muscle tone.  Where is the boundary between preserving a healthy but age appropriate body and defying the natural process of aging? When does the effort to retard aging morph into an outright denial of the inevitability of death?

This urge to deny the inevitable has consequences to be discussed in a later blog, for long term trends in employment and education for our economy as a whole.  More immediately, it is reflected in the frequency with which high cost and often-intrusive medical interventions are employed to keep an aged body alive long after the will to live has gone and all-too-often in violation of the patient’s expressed wishes to be allowed to die.

As many people interpret the Hippocratic Oath (show the “utmost respect for human life”), doctors and hospitals feel they have an ethical obligation to treat your illness if they have the tools to do so. This prescription made perfect sense when there was little the medical profession could do to actually heal an illness or injury, when the role of health care professionals, like their clerical counterparts, was largely to give the patient comfort until God or the fates stepped in.

But what does “utmost respect” mean when science and technology allow the doctor to second-guess God or the fates … to decide, for example, that a failing heart is not a sign of God’s will, but a mechanical problem that should be “fixed” by implanting a pacemaker? Should a pacemaker be implanted in an otherwise healthy 35-year-old father of four? Most of us would instinctively say yes. Should one be implanted in an 85-year-old stroke victim whose mental capacity is permanently impaired? The answer is not so obvious.

These are not new questions, but they take on a new urgency as the baby boomers age. There are not enough health care resources—caregivers and care facilities as well as financial resources—to treat all the “ailments” of the over-65 crowd today, let alone the estimated 90 million elderly that will be clamoring for medical care by 2050.

The issue is not whether we should ration health care … we already do so, based primarily on ability to pay and/or seemingly arbitrary guidelines on what health insurance will cover.  The issue is how should we allocate limited resources in a way that is equitable and fair.

How should we, as a society, decide what kind of health care people should receive, and under what circumstances?  Should the decision be based on spiritual / religious precepts that are often ambiguous and controversial … or on a rational cost-benefit analysis that ignores the question of human dignity and the intrinsic value of life?  Who should make that decision?

What would you do?

Health Care – What is it?

 

Question-Mark-820x1024One of the goals of the Affordable Care Act was to expand access to regular and affordable health care for Americans. Underpinning this goal was a hard-to-argue-with notion that the nation, individually and collectively, is better off when its citizens are healthy.

Is that the same as saying that that all Americans have a right to health care? Even those who instinctively nod “yes” might qualify their answer, depending on how you define health care. Some types of health care are critical to good health, while others seem of marginal benefit.  Under the best of circumstances, the boundaries are far from clear.  And most types of health care are in limited supply, based on the availability of equipment, medical staff, facilities and drug supplies.  We can’t all have everything.

A starting point for the discussion might be the definitions given by the President’s Council on Bioethics in 2003:

    • Therapy: treatment of “known diseases, disabilities or impairments in an effort to restore a normal state of health or fitness.”  Included in this category are things like repair of broken bones, antibiotics for infections, surgical removal of tumors, pacemakers, and chemotherapy or radiation for cancers.
    • Enhancement: treatment “to alter the ‘normal’ functions of the human body or psyche so as to augment or improve native capacities and performances.” In this category are such things as discretionary plastic surgery, botox injections to remove wrinkles, or steroids to improve athletic performance.

This simple model, however, leaves many questions unanswered.

    • How do we classify vaccinations, annual visits to the dentist for cleaning, or periodic screenings for breast or prostate cancer? What about vitamins and exercise regimens, or anti-smoking campaigns. None of these quite fit the definition therapy or enhancement, but they are included in what is now called Preventive Medicine, a set of strategies to maintain health rather than cure illness.
    • Another challenge to this binary model is Palliative Care, which covers the spectrum of physical, emotional, spiritual, and social suffering that often accompanies illness.  Drugs and medical treatments are considered palliative if they relieve symptoms without having any beneficial or therapeutic effect on the underlying disease or illness.  Examples would be dialysis for kidney failure or Aricept for early-stage Alzheimer’s, both of which make life more manageable for a time, but do nothing to cure or reverse the underlying problem.
    • Yet another complication comes with Long Term Care, particularly for the elderly.  While everyday tasks like feeding, bathing and dosing out medications do not ordinarily constitute medical care, their absence leaves those with chronic illnesses and/or limited mobility prone to accidents or malnutrition.  These in turn lead to diseases or illness that may require acute or chronic medical care.

It seems reasonable, at first glance, to make therapeutic medical care available to all Americans. But should I have a right to any and all therapeutic treatments, regardless of my ability to pay?  Should I have the right to any and all procedures—a kidney transplant, for example—if I already suffer from multiple or chronic illnesses from which I will never recover?  Should I have the right to any and all procedures even if I am responsible—alcohol or drug additions, for example—for my condition? And should the standard of “normal” be the same for a 40-year-old as for an 85-year-old?

If your answer to any of these questions is “no,” you are left with even harder questions.  What types of procedures should be restricted or prohibited … and under what circumstances? Who should decide? Based on what criteria?

Similar questions apply to things that fall into the category of enhancement, preventive care, palliative, or long-term care.  Most would agree that pain-medication is a palliative treatment that should be available to anyone who needs it.  But what about Viagra, when it is used to offset a “normal” decline in physical function, but may help to restore emotional health.

What do you think?  Should health care be a universal right, regardless of the ability to pay?  Regardless of other health conditions?  If so, how would you propose to pay for the rapidly increasing costs associated with the aging baby boomers?  If not, what criteria would you use to decide who gets what?