THE GIFT OF HOSPICE

A lesson dying patients need to keep re-learning: The vagaries of EndTime do alter plans. That reality does not keep many of us from continuing to make plans. Nor should it.

I apologize for my absence over these past few weeks. After a month of tough sledding, I again feel strong, primed, and wanting to talk. That is to say, I feel strong enough to think. My problem during this particular siege has not been an inability to "do" things--business, publication chores, errands, etc. Rather, the problem has been an inability to think--to observe, to analyze, listen, write, in short to create. Today I give gratitude to all those forces that have, once again, pulled me back from the brink of despair.

Back to "strong, primed, and wanting to talk." The question for the day is, How is Hospice enriching my EndTime? What can Hospice do for you?

My goal is to live free--as long as possible, with as much relish, awe and gratitude as possible. Whether for a week, a month, or one or two last gorgeous seasons, my goal is to inhale this wondrous world, reach out to those whose hunger touches mine, and sing my songs. That, Brothers and Sisters, is freedom. That's heart dancing delight. NOW, today, this soul sings.

When Looking Back

At times we wander through the dreamscapes
Of our lives like lost pilgrims. We stumble down a path
That twists along the cliff before we plunge into the night.
But even now, remember how, as little children
Our delighted senses used to dance and sing?

Even as the pale glories of our youth give way to fears,
And to the lengthening shadows of autumn afternoons,
Strain to taste again the symphony that plays
Between the changing seasons and the well tuned soul.

In the scented air of dawn, when dew sits like hand-strewn
Pearls upon the fading light of sugar maple leaves, inhale.
In the quiet of the pale moon, which casts its spell
Upon the tide, bewitching every creature of the sea,
Look. And in the piercing song of meadowlarks
Singing to an absent mate at sunset, listen.
Even Now, in all these pulsing, sensate wonders
And a thousand, thousand more, Life still sings.

From my point of view, the patient's point of view, what are the practical components of such a Vision?

1. Palliative Care
To the greatest degree possible, keep the patient free of pain. Simultaneously, keep him or alert, conscious, in touch with life and loved ones. Alert and free of pain. That is a delicate balance. Palliative care as defined and administered by Hospice continues to enhance my ability to stay "in touch."

What's not to like? Unfortunately, most popular connotations of "hospice" are dark, fear producing rumors, half-truths, taboos, and a world of guilt and denial. As a prime example, "Morphine used to suppress the pain will turn me or my loved one into a semi-conscious, drooling addict." No! What the morphine is more likely to do is suppress pain so that the patient can stay in touch with the world around him, rather than drowning in a morass of physical and often psychological misery.

Moreover, patients, caregivers, even physicians, have concerns about failure and guilt. Guilt, and fear. Though such doubts too often remain un-voiced, they do exist, often to the detriment of both the patient and the family. To surrender, to give up, is a sign of weakness. Failure, guilt and denial chase each other's tail, and insist on soldiering on.

So what have I given up by stepping out from beneath a very leaky umbrella? As I related in an earlier post, I gave up a series of extremely expensive but ineffective drugs designed to treat two different terminal cancers. I also gave up a series of side effects that were rapidly destroying my life.

2. In Home Care
Our greatest single need is to die at home, nested, supported by family and friends, and by our books and art and music and other totems that have enriched our lives.

Hospice alone can not fill that deep need. We need, or soon will need, a devoted caregiver. If we are lucky--and many are not--we get that precious care from our most profoundly appreciated loved one, most often our spouse. To die in the arms of a devoted caregiver is to die well. In my wife, Jane Leonard, I am blessed with such a caregiver. She sacrifices much to keep me going.

Note: A later blog post will focus on Caregivers, what they give, at what cost, and what they need from us.

When we give thought and heart to the countless souls who have neither loved ones nor nest, we can only weep. These displaced humans die as they have lived, the wretched of the earth. In America, at least--and in many other countries and cultures--Hospice does everything it can to meet that last deep need to live, to be--and then eventually to die--at home.

3. Nursing Care
Again, to the greatest degree possible, Hospice is a home-based service. My nurse comes to me. She checks my vital signs, and we discuss symptoms, changes in condition, and my pain and energy levels. We also chat about the state of my mind. She usually stays half an hour or so, though someone remains on call 24/7. Should a social worker be useful, one is available. Hospice has a grief group for the survivors, or those whose loss lurks just over the hill or on the immediate horizon. While I do not pretend to be an expert on Hospice, I am a very interested student. I hope to learn more, and to pass it on through the prism of what I see and feel along the way. In the meantime, check out an excellent site: http://www.hospice.com/

4. Prescriptions
Hospice provides and delivers all necessary ingredients to support their sense of my physical and mental needs: Everyone is different. Hospice brings me dexamethazone (one 4MG pill per day); morphine (30 MG twice a day); Zolpidem (20 MG before bed); and, when needed, lorezepam (one .5MG tab, when needed for anxiety.) My favorite drug is oxygen, which I use when sleeping. I have to provide my own "Medical Marijuana." Among the subjects I'll cover in a future post is the what, how and why of these ingredients.

5. The Vision:
Remember, Hospice is not primarily a place. Rather, it is vision of what can be, a vision of how to enhance and enrich the EndTime experience. That vision matches my needs, for which I am profoundly grateful. That same Vision can enhance your needs, or the needs of your loved one.

Recommended Reading
Read "Letting Go" in The August 2, 2010 New Yorker. The author, Atul Gawande, writes a superb article on the question: "What should medicine do when it can't save your life?" The following sentence catches the flavor: "Modern medicine is good at staving off death with aggressive interventions--and bad at knowing when to focus, instead, on improving the days that terminal patients have left." Read it!

Shameless Commercial
One source of my renewed energy is self-delight with the recent publication of The Scorned Ally, my novel set in Cuba and America in 1898. A serious anti-war novel, The Scorned Ally moves a few strong but heartsick friends through the chaos of war, loss and desolation. Finally, in a victory of sorts, the harrowed survivors leave the mountains to pursue old visions fueled by new Hope.The Scorned Ally is available on Amazon.com, along with Folding Paper Cranes, an Atomic Memoir. Both books will soon be available on Kindle and its various competitors. I hope to have copies in local bookstores soon. If offered the chance and time--and energy willing--I'll do a few mini-seminar/ book signings.

- Leonard Bird