The Zen of Science

Loss of the self:
Facing dementia with respect and compassion
By MARC RINGEL, MD

What is your self? Is it the distinction made by your immune system between the sum of chemicals that uniquely make up your physical body and virtually every other molecule in the world? Is your self the totality of connections between neurons in your brain that define your distinct responses and thought patterns? Is it the part of you that is conscious (whatever consciousness means)? Is there, as Buddhists claim, no self? Or, to be less clear but more precise, no distinction between self and non-self?

Dementia is a condition that can really make one look into the question of self. When a competent adult is transformed into a babbling, drooling, incontinent being, what exactly has happened to that person’s self? Is it lost? Changed? Was it always an illusion anyway?

The summer before I started medical school a local movie house ran King of Hearts, over and over. I saw it many times. The film made a big impression on me.

Here’s the premise: Alan Bates is a British soldier sent behind German lines in rural France during World War I. He seeks asylum in an old chateau. It takes Bates a while to recognize that he has stumbled upon a ward for the insane whose keepers have fled ahead of the invading troops. Bates ditches his military uniform and blends in with the inmates, who believe themselves to be Napoleon, a circus performer, a duchess and other personalities, playing their roles and wearing costumes to match. Alan Bates dubs himself King of Hearts.

The charm of this fantasy world within the chateau is contrasted with scenes of the war raging just beyond its walls, where men murder each other on the sole basis of what uniform they wear. It is easy to see why this 1966 release was popular with the anti-Vietnam War crowd.

Would that the movie’s depiction of insanity were true. No matter how ugly external reality may be, mental illness is not a lovely fantasy world to escape into.

Alzheimer’s disease, the most common dementia, comes on gradually. A competent person will feel his ability—to reason, to navigate, to remember words and names, to balance the checkbook—slipping away. Depression, agitation, anger and suspicion are the usual result, not a blissful alternate reality. Whether “standard reality” slips away gradually, suddenly or has never been there (as in chronic schizophrenia), the absence of common experience with other human beings is a profoundly lonely and sad state.

Of course, there are exceptions. I have a patient in a nursing home locked ward who believes much of the time that she is living in Europe with her diplomat husband. In the real world, she no longer recognizes him. I have another patient who looks around this same ward, filled with muttering, pacing people, and declares what a lovely place it is. But most of my demented patients are the muttering, pacing ones; they’re very unhappy, even if they can no longer say why. They have lost their selves and somehow sense the tragedy of it.

Steven Post, a medical ethicist with an Eastern bent, has challenged the conventional Western view that loss of the self through brain disease is necessarily a tragedy. He blames our fear of dementia on the “hyper-cognitive” Occidental worldview.

How then does one prepare oneself for the losses, physical and mental, that come with aging? A friend of mine, a psychiatrist, puts the question thus, at the outset of a lecture he gives on dementia: “If you base your sense of self on your competence and, if you live long enough, you can be sure that that competence will diminish, aren’t you dooming yourself to unhappiness in old age? If so, how might you live your life so as to improve your chances of happiness later in life?”

This column is ostensibly about medicine, so I’m not going to go too much further off on a spiritual tangent. Please indulge me, though, as I wonder aloud if spiritual preparation that provides at least a glimpse of the illusory nature of the self/non-self duality might not provide solace, after ability to reason or even to remember the words that described the insight into non-duality are long gone. And perhaps a cultivated attitude of acceptance, which can disconnect suffering from pain, might outlast the sense of self or loss of self.

Presumably, if you are reading and understanding this piece, you are not demented yourself, so I direct the rest of this article to what you can do for those who are. Reverting to my doctor self (no more or less real than any of my other selves, but the one who gets paid to write this column), I can speak about things that you might do to ease the suffering of a demented loved one.

First of all, seek medical attention. As many as half of old age dementias are at least a little bit reversible by treating any of a host of possible underlying causes: low thyroid, kidney failure, depression, malnutrition, chronic blood clot between skull and brain, urinary infection, showers of small blood clots to the brain from a carotid artery or heart valve, etc. Insist on at least one full “dementia workup,” which should include blood tests, a head CT and other studies as indicated. Remember that depression in the elderly can look so like dementia that it may be called “pseudo-dementia.” Consideration of treatable psychiatric causes of decreased mental function is always in order.

In dealing with a demented person, be compassionate, patient and attentive. Never forget that there is a person in there. Speak clearly and respectfully. Listen to the same stories over and over. Touch the person a lot, but only if touching makes him or her comfortable. Sing, play music, raise the shades in the daytime, take walks or car or wheelchair rides.
Be there. Don’t be afraid to cry. Real human contact, real feeling, is always welcome among the chronically ill.
Ask your healthcare team for advice about comfort measures: how to manage incontinence, mobility, and baths, for example. A shower and a shave are sometimes the best things for morale. Do not rule out judicious use of pain medications or mood stabilizers for the patient who is suffering physical pain, emotional distress or insomnia.
If you are a main caregiver, arrange for respite. Burnout will do neither you nor your charge any good, increasing everybody’s suffering.

Most importantly, try to be clear on goals. When the time comes to make decisions about what types of medical care to institute, continue or withhold, a well-articulated set of objectives is indispensable.

Our default position in medicine is that we are out to cure everybody. That unstated assumption does not apply, by definition, to a person who is incurable. It takes a conscious effort to develop alternative objectives such as comfort, alertness, ability to walk, getting out to the lake once more, or living to see a wedding or a grandchild return from military service.

Try to have those discussions of preferences for dementia care early in the course of the disease or, even better, while the person is still healthy. If such a conversation has never taken place, the next best thing is for someone who knows and loves the person well to make decisions based on what they believe the patient would have decided for himself. If you cannot guess what he might have wanted, you can decide based on what you believe is best, keeping the person’s interest in your mind and your love for him in your heart. The worst thing you could do is to refuse to decide, whether to give a remedy that would alleviate suffering or to withhold a treatment that might prolong distress.
We all hurt when we watch those whom we love decline, physically or mentally. Once again, pain offers us the chance to deepen. And compassion provides the opportunity to transform pain, not into suffering, but into love. That’s what the so-called crazies did for each other in King of Hearts.

Marc Ringel, MD, is a family practitioner and writer based in Greeley, Colorado.