Saturday, March 23, 2013

Suddenly, They're All Gone - NYTimes.com

Lauri Rotko/Getty Images

Caring for the old is just like parenting an infant, only on really bad acid. It's all there: the head-spinning exhaustion, the fractured brain, the demands and smells. Only this time with the knowledge that it won't get better.

That was my life for five years. First came my mother-in-law, then my father-in-law, then my childless aunt, then my mother — all needing different kinds of help as they weakened and started going downhill, all the care overlapping, and almost all of the work to be done despite distance.

You're so good, friends would murmur, but I wasn't — there were plenty of days I muttered, "Can't do this anymore," and nights when I threw back too many drinks, feeling how badly I needed for it to be over.

Now, though, it is done for real, everyone is dead, and the surprise is that instead of being relieved, I feel worse.

More than a year after the last funeral, I still have all the numbers on speed dial: my in-laws' neighbors in Texas and my aunt's in upstate New York; the security guard at my mother's gated San Diego community; doctors, hospitals and emergency rooms in three states; two home health agencies; the 24-hour hospice nurse. I still sleep with the phone on and stashed on my night table, where I can grab it fast. It's over, but I can't let go. No, it's worse than that: I don't want to.

Maybe there is nothing new to say about the nightmare of shepherding the old through the time that is the prelude to death but not active dying. I knew it would be bad, but you don't really understand until you're there, any more than the childless can grasp why a new mother goes three months without shaving her legs.

"Drowning" was the word that came to my mind as the endless crises unspooled. My terminal mother-in-law, abandoning the 50-year pretense that she could stand her husband to demand: "Put him in a nursing home! Get him out of here!" My father-in-law, newly widowed and alone in an early Alzheimer's haze, barricading himself in the house against caregivers. My aunt, her lungs destroyed by a three-pack-a-day cigarette habit and reeling from one hospitalization after another, begging me to send morphine so she could end it all.

Alerts peppered every hour. Do something! Your father-in-law's behind the wheel again. Your aunt's in the hospital with pneumonia; she's recovering; no, she's failing, come quickly; no, she's been yanked back from death into a life of oxygen concentrators and cognitive crash; find a nursing home — wait, are you in New York? Because your mother's in the hospital in San Diego and it could be serious, can you get on a plane?

Frantic was my new normal and normal the new never, because when someone is old, especially if dementia is involved, nothing is routine. Even the answer to a straightforward question, like "What day is it?," vanishes on the wind; every patched-together arrangement works only until it doesn't.

"Drowning" — also buried, shredded, torn apart. Helping my daughter prep for the SAT, cooking family dinners and maintaining a professional life, while also paying three sets of bills, running three houses in three cities, either planning a trip to see how things were going or recovering from that trip, and never living in just one place.

I started keeping my cellphone on my desk, then leaving it on all night, and finally didn't even risk putting it down because the one time I did, to watch my child in a high school soccer game, there were five frantic caregiver messages by halftime: Where are you, what should I do, she can't breathe!

And yet: Parenting on bad acid is still parenting. I wasn't one of those women who went all dewy-eyed the second she gave birth. "I don't feel anything," I remember thinking in dull panic as I looked at my squash-faced, just-born daughter. "How can I love her? She's a stranger." Within two weeks, though, I was transformed, flattened by a passion I had never even dreamed existed, and it was the grunt work of motherhood that did it to me, the holding, touching, watching, feeding, smelling — the getting to know the specifics of this little creature in a way that went down to my bones.

I had always imagined that you put up with the job of caring for a baby because you loved her, but for me it was the unfathomable, slightly terrifying intimacy of caregiving that brought the love.

And with my old people, it was the same. The fried-brain resentment that gets you drinking at night fades when you are with someone in the living room or kitchen. Just as it is with a baby, your job is tending, and the comfort you bring is simple and physical. You sit for hours, the heat always cranked up high, doling out pills and pouring water, changing the nitro patch, combing hair. You fix lunch, rub in skin cream.

You come to know the precise texture of thin, dry skin, the kind of touch that pleases, the small things that bring a smile. My father-in-law had to have vanilla ice cream every day, but only Blue Bell brand and in a waffle cone. Even with her thinking garbled, my aunt needed the New York Times crossword puzzle and endless games of gin rummy. My techno-challenged mother wanted written computer instructions to consult the next time the infernal machine swallowed her text.

More than anything else, when you're with the old, you listen. My Greatest Generation/Army veteran father-in-law, whose interest in the world essentially ended in the late 1950s, talked in endless circles about his small-town childhood and the World War II campaigns of Italy and North Africa. My aunt, obese and isolated for years in a small upstate town, had spent her 30s and 40s single, teaching history in New York City public schools for nine months a year, then buying elegant clothes and setting out for Europe and Africa.

The giraffes came down to the water hole every night, right in front of where I stayed…. One night, in Turkey, in a cafe next to the sea, we danced in the moonlight….

When the present is unbearable and there is no future, the past comes rushing back: family history, secrets and buried memories rising out of the ether. My relentlessly forward-thinking mother never dwelled on sorrow or regret, but my Aunt Belle committed suicide by jumping in front of a subway train, she told me one night as we sat among the empty cups and crumbs at the dinner table.

I was home alone when someone called. I had to tell my father that his sister was dead. I'd never seen him cry before.

I could see it all: my father-in-law's bungalow in Crandall, Tex., whose open front door proved irresistible to a contrary billy goat one day in the 1920s. The 10-cents-an-hour wage my aunt earned tending a booth on the Coney Island boardwalk during the Depression — I was saving to buy myself a new pair of shoes, but my mother took the money and I still can't forgive her for it. My mother's quiet, wild joy during her first winter in Ithaca, N.Y., when a Cornell scholarship let her escape the dirt and smudge of Queens to a snowfall that stayed white.

All the years I was young, the center of life's drama, I barely saw these people. Now they were simultaneously disappearing and becoming unbearably real to me, heartbreakingly diminished and yet still powerful, deeply rooted trees that against all reason would not let go.

There was my 98-pound mother, befriending the immigrant podiatrist who tried to relieve her painful, bunion-crippled feet; limping to her desk and squinting her one good eye at that maddening computer, so she could finish an article for her community newspaper. There was my wheezing, demented aunt, frowning at the sign "Don't Toutch" that her caregiver had placed above a complicated new hallway thermostat, and pushing her walker to it so she could correct the spelling.

Their singularity dazzled me. Their selves, revealed in all their layered complexity, could never be replaced. I came to know them — and I fell in love.

When you care for the old, life can go on unchanged for years. Then suddenly, without much warning, everything shifts. Six months after her cancer diagnosis, my mother-in-law died; 18 months later, my father-in-law fell, had a small stroke, fell again and lasted only two months in the Alzheimer's unit of a nursing home.

Two years after she survived near-death by respiratory failure, my aunt's breathing got so bad she couldn't even make it to the bathroom; she wanted only to sleep, to talk to her long-dead sister, who she insisted she heard on the stairs. You'd better come quick. Minutes after my plane landed at Kennedy Airport I got the call saying she was gone.

Not long after my mother, radiant in a sun-colored jacket and pearls, celebrated her 90th birthday with a huge party, she said her stomach hurt. A week later, I was in a hospital room sobbing against her cold, still shoulder.

I have my life back now, but that fact is less simple than it was before. When I look at the mementos I've inherited, the crumbling photo albums, cookbooks that smell of cigarette smoke, '50s furniture and cut glass, I also see where they used to sit, in other places and rooms. I miss the quiet afternoons, the houses that eventually came to feel like home, in cities I'll never again have reason to visit. I miss it all. I miss them.

Sometimes, when I'm out, I catch a glimpse of a short, gray-haired man in a baseball cap or a skinny old woman in a tailored bright jacket and my heart stops. I see my old people everywhere, which only reminds me that I'll never see them again.

When you have a baby, it's as if your whole self shifts, reshaping itself around a presence that later you can't even remember living without. You reach down and take a small hand, and joined, you hurtle toward the future. Death just offers stasis, absence, dissolving shadows.

None of that was a surprise, but it's still a shock. While you're caring for the old, you can't believe what you're called on to do and where you find yourself, can't believe that your time with them will ever end. Then one day, it just does.



Carol Mithers is a Los Angeles-based journalist and the co-author, with the 2011 Nobel Peace Prize winner, Leymah Gbowee, of "Mighty Be Our Powers: How Sisterhood, Prayer, and Sex Changed a Nation at War."


http://newoldage.blogs.nytimes.com/2013/03/22/suddenly-theyre-all-gone/?hpw