Hospice 101

I’ve spent the last several nights providing hospice care to my terminally ill father. It has been a trial by fire and has proved both more and less difficult than expected.

The easy part was learning the routine. That was surprising because on its face the “routine” is anything but. Six different treatments occur on independent intervals (4-hour, 6-hour, and “as needed”) and change every few days, and as a result, neither patient nor caregiver get very much sleep. Until I arrived, my mom carried that load alone for months, and I can tell you after only four days of it that she is built of much sturdier stuff than I. On my first night off, I slept twelve hours and would have slept eight more had I not been woken to greet family members coming to visit on a Sunday afternoon.

The more difficult part is acceptance. Dad’s affliction is lung cancer, marked by a persistent, incurable, and accelerating cough and a shortness of breath that alone would be enough to drive anyone crazy, much less in combination with other things. Unfortunately, those “other things” are just as bad: metastasis of the cancer to his liver, pleural sac, and lymph nodes, and severe arthritis, exacerbating a lifetime of traumas to his back and shoulders and aggravated by every cough.

There are pills, there are syrups, there are machines. He gets oxygen from a noisy pump through a thin tube he wears over his ears and inserts into his nostrils, a tube that stretches the length of the house when extended and lays in a loose, often tangled coil at the foot of a hospital-style table next to his bed. Twice on my watch, he has fallen in his morphine-addled state, at least once tripped up by this tube, sending his head crashing into his dresser, leaving bruises and bloody welts on his head. Thankfully, his hair has grown back since he abandoned chemo over a year ago, and his thick white mane covers most of the evidence of this fall.

The morphine itself is administered through a nebulizer, essentially a fancy mister/inhaler, which runs eight minutes at a time, whenever his cough threatens his sleep or peace of mind, on average every three to four hours. This is no average cough. It begins as a breathy wheeze, perhaps enough to rattle the phlegm hanging loose in his throat, but not enough to expel anything except the moisture in his breath. It builds with a rapid succession of frustratingly inadequate hacks, each louder and breathier than the one before, sometimes stronger, sometimes weaker, but each one only a hint of the power he needs in order to satisfy what his body requires: a gale force that would rip the tumors from his chest and lungs for him to spit unceremoniously into the toilet instead of the blood and bile he generates now.

Even so, his cough racks his weak body, rattles his bones to the elbows, and frustrates his soul into a weary depression. That may be the hardest thing to see, and the hardest thing for him to show us – this confident man, larger than life itself for all of my 46 years, stumbling into furniture, swearing at his own inadequacies, his glum mood a stark contrast to the cheerful good humor that has delighted children and charmed women (and men) for decades. This isn’t my dad, I say as I help him shuffle from the bed to the bathroom and back, not the dad I know.

I’ve been told that long-term hospice patients outlive dedicated caregivers as much as 70% of the time, and I can see why. While Dad sleeps, we fret; while he lies sedated, we share his depression and sit nervously beside him. He suffers, we endure. He waits patiently for his death; we worry daily that he will run out of patience, or that we will, and in so doing, fail him. Our pain is but a fraction of his, but so is our courage, as we refuse to accept that with which he has long ago made his peace.

A friend said to me recently that our parents’ final great lesson is to teach their children how to die with dignity. It is hard to maintain one’s dignity while spilling spaghetti and orange juice down one’s pajamas, or requiring assistance to stand, walk, and bathe. But even these moments slide by with decreasing notice and are leavened with Dad’s quirky humor, and it is as we chuckle along with his well-honed one-liners that we begin to obtain the level of comfort with his fate that he desires for us. It is the fate that we all share, after all; “nobody gets out of this world alive,” he likes to say (along with, “I came into this world with nothing, and I’m leaving with half of it”). For if there is any dignity in dying, there can be no greater way to express it than with good humor.

Look out, afterlife. Your dignity quotient is about to go up.