The Lament of the Long-Distance Caregiver
You know the situation. You’re engaged in small talk with a friend, who maybe knows your parents. Somewhere just beyond questions about your job lurk the awkward questions about your parent with Alzheimer’s. In my case, it’s my mother who is meandering ever so slowly toward the end of her battle with early-onset Alzheimer’s disease.
I generally put on a good face and enthusiastically deflect, noting that things don’t get better at this stage but my family back in Ohio is taking good care of her. I cheerfully mention that I’m working with the Alzheimer’s Association and doing what I can way out here in California. Alas, I am that oft-resented character in this doleful display: the long-distance caregiver.
When I hear about people with Alzheimer’s disease, the story usually goes something like this: We got the diagnosis, it was really hard, and then he or she passed. Nobody ever shares the details about the “it was really hard” part, and for good reason. It is really hard; ugly, dehumanizing stuff happens on a daily basis to both patient and caregiver(s), and it goes on for years.
I’ll also spare you the goriest of details, but imagine trying to care for someone, a 68-year-old someone, who doesn’t know who you are. This person is literally scared of you, the well-intentioned caregiver. Sometimes she yells at you; sometimes she tries to hit you. She won’t let you clean up her embarrassing messes. She won’t let you feed her or help her from the chair that’s held her hostage for days.
Actually, as the long-distance caregiver, I usually am spared the goriest of details. I often (half) joke with folks who ask about my mother: I tell them that I’m the jerk in California that flies to Ohio four or five times a year to make sure that everyone there knows they’re doing everything wrong. I send the occasional box of supplies or help get something cleaned up around the house, and I waltz back to my unencumbered life, satisfied that I’ve done my part.
That’s not how it is, not for this long-distance caregiver. I want to do more. I want to quit my job and spend as much time with my mom as my brother does. I want to relieve my stepfather, for whom caregiving is an impossible, full-time, overwhelming job. I doubt my worth as a son and a human being on a daily basis. I have these thoughts, I get weepy about my oppressive helplessness, and then I go back to whatever I’m doing, in California. The cycle of guilt marches on.
But let’s pause for a second to celebrate we long-distance caregivers. No one feels sorry for us, nor should they. We have a job to do, without whining or excuses. Let’s focus on the things we can do and the contributions we can make from afar, be they financial or emotional. We can lead by example and get our rears to Ohio as often as we can. I’m fortunate that my boss and company have been incredibly supportive and flexible, and I’m grateful to have the resources and constitution for travel that enable the time I do spend with my mom. I can call every day, even though I don’t. I can call more often, even if she doesn’t know who I am.
In fact, I think I’ll go call her right now.
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This is a beautiful, vulnerable, truthful tribute to your life and hers. Thank you.
Thanks, Ali!
Truly loved reading this, thank you so much for sharing. Your mom will be greatly missed!
MATHEW —HAVING LOST MY PARENTS MANY YEARS AGO —AND MY FAVORITE AUNT –AN INCREDIBLY REMARKABLE WOMAN –READING THIS BRINGS BACK THE OVERWHELMING EXPERIENCE OF EACH INDIVIDUAL PASSING –AND AS I TAP OUT EACH WORD TO YOU –I’M HOLDING BACK THE TEARS — ( FOR AS LONG AS I AM ABLE )—-THE ABSOLUTE AND MOST POIGNANT THING I CAN TELL YOU —IS THAT AS I SIT HEAR —JUST FEET FROM OUR KITCHEN — THERE IS THE TICKING OF
“THE CLOCK” — THATTTTT DAMN CLOCK THAT PEG –YOUR MOM —GAVE US SO MANY YEARS AGO— IF YOU DON’T REMEMBER —IT’S LARGER THAN A DINNER PLATE —AND WHERE THERE IS A NUMERAL —THERE’S ALSO A PICTURE OF A BIRD —
A GREAT HORNED OWL AT 12 O’CLOCK — NORTHERN MOCKINGBIRD AT 1 –AND SO ON –ROBIN WOODPECKER CARDINAL ETC —WITH EACH HOUR MAKING THE CALL OF THE APPROPRIATE BIRD — FOR THE FIRST FEW YEARS — I HATED THAT CLOCK —REALLLLLLLLLLY HATED THAT CLOCK —-
WHY ? —BECAUSE THE “OTHER LOCKER GIRL”
YOUR AUNT MY WONDERFUL INCREDIBLE AWESOMEST WIFE –CHOSE TO HANG IT UP IN THE KITCHEN — AND WHEN I WAS IN THE KITCHEN AND THE HOUR STRUCK —THE APPROPRIATE BIRD NOISE WOULD LOUDLY COME ON–AND SCARE THE HELL OUT OF ME —IT WASN’T UNTIL PEG CAME TO VISIT ONE SUMMER –AND I TOLD HER — “PEGGY -THAT DAMN CLOCK GETS THE ATTENTION OF EVERYONE WHO COMES TO OUR HOUSE –A N D WE GET QUESTIONS LIKE “YOU HAVE BIRDS ? ” OR “WHAT WAS THATTTTT ?” — AND PEGGY IT SCARES HELLOUT OF ME WHEN I’M STANDING HERE AND THE BIRD GOES OFF
( QUITE LOUDLY ) —-AND IN HER OWN INCREDIBLE FASHION SHE REPLIED SARCASTICALLY “THAT’S WHY I GAVE IT TO YOU — SO YOU’D THINK OF ME ! ” —LITTLE DID SHE KNOW —-YEARS LATER WHEN KIT TOLD ME THAT PEGGY HAD STARTED TO FEEL THE ONSET EFFECTS OF THIS DEBILITATING ILLNESS —“THE CLOCK “—CAME TO PERSONIFY –YOUR MOM — MY ATTITUDE TOWARD “THE CLOCK ” SOFTENED –AND I NO LONGER CALLED IT “THE CLOCK ” BUTTTTTT INSTEAD REFERRED TO IT AS “PEGGY’S
CLOCK ” —AND WHEN THE HOUR STRUCK AND I’D HEAR THE BIRD NOISE — I WOULD NOT BE ALARMED ANY LONGER –BUTTTTTT WOULD INSTEAD THINK OF DEAR SWEET PEGGY AND HER FIGHT AND STRUGGLE — KNOWING THAT WITH THE LOUD CLICK OF EACH PASSING SECOND –THIS PRECIOUS WOMAN ⤠WAS LOSING HER BATTLE —AS THE TIME WAS FADING — THE TICKING OF THE SECONDS AS I TYPE THIS IS ALMOST DEAFENING —
WHENNNNN SHE WAS HIT HARD — AND HAD TO STOP WORKING — “THE DAMN CLOCK”—BECAME ABSOLUTELY PRESIOUS TO ME ⤠—IT’S TRULY OUR MOST PRIZED POSSESSION —- REMEMBERING AS NICO DID – THOSE AWESOME WONDERFUL CHRISTMASES IN JERSEY — WHEN YOU JASON AND NICK WERE ALL YOUNG’INS— THE MOUNTAINS OF PRESENTS —
SITTING AROUND THE TABLE WITH YOU AND JASON –YOU TWO RAPPING –AND YOUR MOM CUTTING UP AND LAUGHING —GETTING PEGGY TO SING THE LITTLE GREEN FROG — HOW CARING -CONSIDERATE –AND WARM PEGGY COULD BE —AND YEARS LATER ON HER TRIP TO VISIT US IN TARZANA –WITH THE “LOCKER GIRLS “—IN THE JACUZZI —ME SPRINKLING ROSE PETALS ALLLLLL OVERRRR THEM AND THEN THROWING IN SOME RUBBER DUCKS —ALLLLLLL TO PEG’S GLEE AND DELIGHT —- SO EASY TO PLEASE -SO GENUINELY TICKLED ABOUT THE SMALLEST ALMOST INSIGNIFICANT THINGS I WOULD TELL HER — AND I LOVED TO MAKE HER LAUGH –BECAUSE SHE DID THATTTTT SOOOOOOOO WELL –I REALLY LOVED HER LAUGH MATT — AND AGAIN WITH “THE LITTLE GREEN FROG ” —- WHY ? BECAUSE SHE’D PUT HER HEART IN IT AND SERIOUSLY BELT IT OUT — AN AGAIN –AS I DID THE VERY FIRST TIME I HEARD HER DO IT —WOULD STAND THERE –HANGING ON EVERY NOTE AND “GUNK GUNK “—ABSOLUTELY MIND BLOWN AND ASTONISHED THAT THIS INCREDIBLE INTELLIGENT LADY — WAS ABLE TO THROW ALL COMPOSURE —RESTRAINT AND BELT OUT THAT SONG WITH COMPLETE ABANDON AND LOVED HER FOR IT —- MATT —NEVERRRRR LOOKED ON PEG AS MY
SIS-IN -LAW — NOR –A RELATIVE (WHICH SHE WAS)
BUTTTTTT “PEGGY” –“THE PEGGY”–PEGGY THE INTELLIGENT –WONDERFUL FUNNY PEGGY —PEGGY THAT GAVE US THAT DAMN CLOCK –SHIIIIIIIIIIIIT TEARS !
AS THE TWIG IS BENT SO GROWS THE TREE — STAND STRONG AND PROUD -YOU AND JAS — SHE DID A GREAT JOB RAISING YOU TWO — I WAS CONSIDERABLY ENVIOUS OF YOUR COLLEGE GRADUATION MATT –WHY ?
CAUSE I COULDN’T BELIEVE THAT ANY ONE OF YOU GOOFY KIDS WOULD DO THAT — THEN YOU ALLLLLLL DID –AND YOU’RE ALLLLLLL DOING WELL —A N D TRUST ME ON THIS ONE — THE PARENTS ARE PLEASED –PROUD — AND FULFILLED —
YOUR MOM FELT AS I DO –WE HAD FOUR SONS –THAT WAS ESTABLISHED IN JERSEY ON OUR FIRST CHRISTMAS —
SEE IT DOES TAKE A VILLAGE MATTY –THOSE DAMN LOCKER GIRLS — YOU’RE OLD ENOUGH TO HAVE REALIZED –YOU HAVE GREAT GENES —LOCKER GENES — I UNABASHEDLY WITHOUT HESITATION TELL “EVERYONE” I COME IN CONTACT WITH THAT ” I AM MARRIED TO THE MOST INCREDIBLE AWESOMEST WOMAN TO EVERRRRRRR WALK THIS PLANET “— AND YOUR MOM IS HER SISTER –YOU COULDN’T HAND PICK A BETTER MOTHER EVERRRRRRR —-I TELL KIT —“HERE’S ALLLLLL THE WOMEN IN THE WORLD -AND THENNNNN HERE’S YOU TOOTS ⤠”
I’VE BEEN TO WAY MORE THAN MY SHARE OF FUNERALS MATT — AND I DON’T CRY — I CELEBRATE THE LIVING -BUT HONOR THOSE PASSED — BUTTTTTT I KNOW IN MY HEART –THAT I WOULDN’T BE ABLE TO CONTROL MYSELF –PEGGY WAS ⤠THAT SPECIAL —
WHY ? — CAUSE SHE’S ONE OF THE LOCKER GIRLS –THE AWESOMEST WOMEN TO EVERRRRRRR WALK THIS PLANET — PEGGY OH PEGGY –YOU LITTLE GREEN FROG AND YOUR DAMN CLOCK –I LOVE YOU SOOOOOOOO MUCHHHHH
AND I WILL FOREVER KEEP YOU IN MY HEART (FULL ON CRYING) AND I’M GRATEFUL AND OHHHHHH SOOOOOOOO DAMN HONORED TO BE MARRIED TO ONE OF THE “LOCKER GIRLS ” NICK