This long article on a family dealing with PSP was published last week in a Central Pennsylvania newspaper, The Patriot-News. It’s a very realistic portrait of 69-year-old Larry Freeman in the final stages of PSP. He is cared for by wife Sue, son Chuck, and other family members. Larry is on hospice at home. He is mute and moves very little. He was diagnosed with PSP by Johns Hopkins in Baltimore.
It’s also a realistic portrait of Larry’s wife Sue and the overwhelming stress she feels. Part of the stress comes from so many family members living in her home.
Online, there are a dozen photos of the Freeman family as well as a one-minute video of Sue feeding Larry.
There are two points made by the author that I don’t agree with. Families who place their loved ones in care facilities are described as keeping a buffer between “themselves and their loved one’s impending demise.” The only difference in my mind is that the care facility is doing some of the “dirty work.” They certainly weren’t a buffer to my father’s impending demise.
Also, patients who stop taking in nutrition are described as starving to death. There’s a lot of data showing that people whose bodies are shutting down do not experience starvation.
As disease takes over dad, Perry County family crowds together to provide care
Published: Monday, April 11, 2011, 11:50 AM
By John Luciew, The Patriot-News
The mechanical medical bed whirs as the son raises his father’s head so he can eat.
Larry Freeman, once a robust racewalker, is completely immobile now.
His muscles are rubber. His face, a slack mask. His speech, a low, breathy jumble of nearly incomprehensible sounds.
He is on a hospital bed in the middle of the living room of his Newport area home. Five members of his family act as his primary caregivers. Two married couples have moved into the small house to help Larry’s wife, Sue, with his constant care.
Bare-chested, bleary-eyed and barely out of bed, only-son Chuck pads between the living room and the kitchen to take his father’s breakfast order.
It requires a couple of attempts, but Chuck manages to decipher the mumblings of his 69-year-old dad.
Larry wants scrapple.
Chuck asks again, just to be sure.
Scrapple it is.
Sue sets to frying the frozen meat in a skillet. Chuck rounds up the rest of Larry’s breakfast: a bowl of Raisin Bran, a half of a glazed doughnut and a cup of coffee with a bendy-straw.
Ill as he is, Larry’s appetite remains strong.
Because Larry can no longer feed himself, Chuck dishes it out, bite by bite. He uses a spoon, so Larry doesn’t hurt himself champing down on a fork. Chuck goes slow, making sure his father chews each bite before doling out another.
Back when Larry worked on the production line at the Quaker Oats plant in Hampden Township, the finely-tuned weekend athlete was famous for wolfing down his meals. At home, he’d be up from the dinner table and out in the garden before Sue finished her second bite.
But like the rest of Larry’s muscles, the ones that gently move food down Larry’s throat have been ravaged by disease.
Now, no matter how slowly Larry eats, food can get stuck, then back up into his throat.
This ignites prolonged and scary choking sessions, during which Larry is in danger of passing out — or worse.
His body is no longer capable of mustering even one deep, cleansing cough to clear his throat. The disease has taken this away, too.
For the moment, Larry eats his breakfast in peace. Even at the deliberate pace, he makes quick work of a saucer plate-sized portion of scrapple, three-fourths of the Raisin Bran, a bite of the doughnut and several sips of coffee.
Now, it’s time for his medicine.
Sue walks over with a bottle of Ensure and a fistful of pills.
There are so many, Chuck feeds them to his father two at a time. Each dose is washed down with a drink of the Ensure. Larry insists on the thick, calorie-boosting beverage when taking his medicine. Strawberry is his favorite.
With that, another day of caring for Larry has begun in the Freeman household.
Catastrophic illness has come to call on the family in the form of a rare disease with a long name — progressive supranuclear palsy.
When it was finally diagnosed in late 2009 and the prognosis appeared grim, Sue wouldn’t hear of lodging Larry in a nursing home or long-term care facility.
“Being at home is better,” she insists. “Being around family is better.”
So, the Freemans banded together to do battle with Larry’s disease.
Last December, Chuck, 38, moved back home with his wife, Paula. Paula’s sister Kandy and her husband, Bob Little, have since moved in, as well.
It makes for cramped quarters inside the Freeman’s three-bedroom double-wide. But there is strength and support in their numbers.
Family members take shifts caring for Larry, as if they were a team of round-the-clock nurses. They divvy up the cooking and chores. And they pool money for food, as dinners must now feed six.
Most of all, they buoy each other with a combination of emotional sustenance and comic relief essential in such life-and-death struggles.
Sure, there are sisterly squabbles, constant complaints and long, uncomfortable nights in cramped confines. But the
Freemans are finding a different kind of comfort in one another as they care for one of their own.
Still, each long day begins and ends with heavy burdens that never ease.
“I never dreamed I’d be doing this hands-on, 24-7,” a weary Sue says near the end of another seemingly endless day of juggling her school bus route, Larry’s care and her household chores.
“You never know what life is going to give you around the corner,” the 57-year-old shrugs. “Life is very funny that way.”
‘Kryptonite to Superman’
When devastating disease strikes, there are two types of families.
The first prefer to keep disease and death at arm’s length. By choice or necessity, they seek the assistance of professional staffing agencies and the insulation of institutional settings as buffers between themselves and their loved one’s impending demise.
The second insist upon taking on the role of primary caregiver themselves.
The Freemans are the latter.
They have enrolled Larry in Hospice of Central Pennsylvania, and they pay a private-duty caregiver to come in for a few hours a day, mostly when Sue is out making her afternoon van runs for the West Perry School District.
But they are never not involved in Larry’s care.
“It’s a heck of a thing to take on,” says Don Bechtel, a hospice nursing assistant who checks in on Larry for about an hour most weekdays.
“People don’t really know what it takes,” he says with experience of having cared for more than 100 at-home patients. “The biggest shock is that it’s like taking care of a baby. You don’t want to make the patient feel that way, but that’s how it is.”
The biggest adjustment for the Freemans has been how quickly and completely their once-strong and active husband and father has become immobile, bed-ridden and totally dependent upon their care.
For two decades, Larry traveled all over the country as a competitive racewalker.
The trophies he won cram a bookcase. Framed pictures of Larry mid-stride and clad in shorts and tank top, with his race number pinned to his chest, fill his bedroom.
That he excelled in an exacting sport requiring near flawless muscle control seems darkly ironic, because it’s everything his body now lacks.
Race walking is a hip-swiveling, weight-shifting, foot-shuffling study in grace, endurance and controlled speed.
It’s a sport in which its fast-walking participants can look odd, even comical, as if they have an urgent need for a bathroom. But truth be told, it requires tremendous athleticism.
Racewalkers stay low to the ground, arms pumping close to their hips, shoulders barely rising. Their exaggerated hip movement is in fact a full rotation of the pelvis. Their only goal is forward propulsion.
World-class racewalkers can clock seven-minute miles. They do it without their feet ever losing contact with the ground.
The equivalent of one full foot must remain on the ground at all times. A “loss of contact” can result in time penalties or even disqualification.
Racewalkers accomplish this by keeping the knuckle and toes of their back foot and the mid-sole and heel of their front foot on the pavement at all times.
This exactitude reduces a racewalker’s stride and forces him to step up his cadence. The resulting stride rates are comparable to Olympic athletes running 400-meter races. Yet, racewalkers can maintain the pace for hours at a time.
Larry Freeman was a master of the sport.
Even a heart attack six years ago couldn’t slow him down. He worked himself back into shape, and he swiveled his hips and shuffled his feet in the annual Perry County Turkey Trot.
That was November 2007.
It would be his last race.
Quietly, inexplicably, he just stopped.
His family figured it was his heart troubles finally slowing him down.
A couple years later, Larry gave up his second love — gardening. Hours could pass as Larry tended his planting patch, while oldies tunes blared on his radio.
Now he was ceasing this, too.
Yet, it wasn’t until he began tripping and falling that family members began to worry.
One afternoon, Larry plunged face-first into a cactus plant in the front yard. His grand-niece Jasmine witnessed his frightening fall and let out a terrified scream. “Grandpa fell!”
Larry was already picking himself up and doing his best to make a joke of it. But the dumbfounded looks on his family members’ faces said otherwise.
Something was wrong.
Larry’s speech, never a model of diction, was getting increasingly worse. He was badly slurring words now. And he could be seized by coughing fits so violent, he’d get dizzy, even lose his balance.
At first, family doctors suspected allergies, even Lyme disease. He went to specialists for batteries of tests and ended up with a bevy of pills.
None of it worked.
The coughing — the hacking — not only continued, it grew worse.
One spell caused Larry to crash the local Meals on Wheels truck while making his mid-morning rounds.
Another barrage of medical tests led Larry to a neurologist. The doctor noticed something odd about his eyes.
Larry could not look up. His eyes wouldn’t move in an upward direction. It was a tell-tale sign of a very rare and devastating disease.
A couple of trips to Johns Hopkins in Baltimore confirmed the worst.
The experts finally put a name to what was wrong — progressive supranuclear palsy. PSP for short.
When the same disease first gripped its most famous sufferer, Dudley Moore, people mistook the late actor’s increasingly clumsy falls as a real-life incarnation of Moore’s hard-drinking character from the hit movie, “Arthur.”
Only this was no laughing matter. The disease’s initial symptoms often include loss of balance, lunging forward, knocking into objects and falling. It explained Moore’s problems — and Larry’s.
But while the experts had finally diagnosed what was wrong with Larry, they could do nothing to help him. There’s no cure for this venomous combination of Alzheimer’s, Parkinson’s and Lou Gehrig’s.
And to see his dad now — little more than a year after that fateful diagnosis — is to cause Chuck to wonder where the man he once knew has gone.
“Let’s just say it’s been like giving Kryptonite to Superman,” Chuck says of the disease’s effects. “You know how Superman is with Kryptonite? He’s helpless, and you don’t know what to do. The planet’s in trouble, and he can’t do anything about it. That’s how I feel.”
Day by day, a son watches his hero fade.
Savoring the sun
The Freemans’ double-wide tucked off a rural road west of Newport is a sick bay, a rooming house and, when the stress gets to be too much, a place to party and let go.
Larry is front and center for it all.
Instead of being shunted aside in a bedroom, his medical bed is parked in the living room, right in front of the picture window.
He could be in a warmer spot, especially because he constantly complains of being cold. It’s yet another symptom of the disease. Larry’s wasted muscles can no longer produce those rapid-fire contractions that we take for granted as shivering.
Nevertheless, the lover of all things outdoors insists upon being by the window. Larry keeps his face tilted toward the light, even if the sun hurts his eyes.
The muscles of his eyes have slackened. His pupils no longer properly expand and contract.
His family places a damp wash rag over his eyes, instead. This keeps them moist and protects Larry from the skull-searing brightness that his eyes can no longer regulate.
At least he can feel the warm shafts of sunlight on his face.
While Larry and the demands of his disease are a constant presence in the Freeman house, family life goes on beyond his care.
Working through a temp agency and assigned to a Middlesex Twp. warehouse, Chuck would love a job that’s more permanent and conveniently located.
After feeding his father, he checks the help-wanted section of the newspaper, then trolls the Internet.
Between her morning and afternoon school van runs, Sue is on call for her second employer, the Carson Long Military Academy in New Bloomfield. She’s constantly shuttling cadets between the school, the Army bases in Carlisle and the train station in Harrisburg.
Fresh off her morning school run, a call comes in.
Sue isn’t sure if she should accept the dispatch.
Sisters Kandy and Paula are out running errands. And with Chuck unable to leave Larry’s side, there’d be no one to pick up Larry’s lunch from the senior center in Newport.
According to the menu calendar posted on the refrigerator door, today’s lunch is liver, Larry’s favorite.
“Better not take a chance,” Sue tells the dispatcher, sounding reluctant to pass on the assignment.
Chuck grabs his cell phone and quickly calls his wife. The women can swing by Newport for Larry’s meal on their way back from Camp Hill.
Chuck signals this to his mother, and Sue reverses her initial decision.
“Okay, I’ll take it,” she tells the dispatcher.
Before heading for a shower, Sue tunes the TV to “Regis and Kelly,” one of Larry’s favorite shows. The program flashes on the screen just as applause ebbs and the two hosts begin their good-natured banter.
For the rest of the day, the TV furnishes the soundtrack and provides the background noise at the Freeman house.
As the hours roll by, Sue cycles through channels, tuning in Larry’s favorites: “Hogan’s Heroes,” “McHale’s Navy,” “The Cosby Show.”
But with his eyes mostly closed or covered by a wash cloth, it’s hard to tell if Larry is watching or even listening to the laughtrack-laced levity.
‘Work it loose!’
Though mute and often motionless, Larry can make his presence known at any time.
Some of his ways are playful.
Lately, he has a habit of knocking a stuffed animal out of his bed when he wants attention. This forces someone to fetch the toy.
Hospice nurses have warned that Larry will sometimes act like a spoiled two-year-old. And after repeatedly fetching the stuffed frog, Kandy comes up with a back-saving solution.
She tethers the toy to the rails of Larry’s hospital bed. This way he can still toss it, but it won’t hit the floor, merely dangle at the side of his bed.
Fixing Larry’s covers is another constant chore.
His pile of blankets has a way of sliding off his shoulders. He announces his discomfort with a low moan.
“He could have on a million blankets and still be cold,” Chuck says, shaking his head before answering another of his father’s calls.
To cut down on these complaints, Chuck positions folded afghans at either side of Larry’s head. This weighs down the rest of the covers, keeping them from sliding off.
Another way Larry demands attention is scary, even life-threatening.
One moment, Larry is downing his thrice-daily dose of more than a dozen pills. It’s the usual routine following a meal.
What happens next is anything but.
At first there’s no sound at all. No breathing. No coughing. Nothing.
Larry’s eyes expand into saucers. His mouth constricts into an oval. They’re the only expressions on his otherwise blank face.
Finally, he musters his version of a cough. It’s really more of a rasp, a wet terrible sound.
It’s not nearly enough to clear his throat and restore his breathing.
Larry isn’t choking in the traditional way, either. That is to say, a piece of food isn’t lodged in his windpipe.
Rather, the food he’s been eating has halted its descent down his esophagus. The rhythmic muscle movements that usually usher things along do not work inside Larry’s throat. And when the food backs up too far, it plunges Larry into respiratory distress.
At the first sign of this, Chuck and Sue swing into action.
They pull Larry forward, Sue from the front, Chuck from behind.
Sue locks eyes with her husband and shouts directly into his face. She is desperate to establish a connection that will prevent Larry from losing consciousness.
“Are you okay?” she shouts. “Work it loose! Work it loose!”
Chuck massages Larry’s bare back, as if trying to jump-start his father’s throat muscles and get the offending backlog of food moving again.
Instead, Larry’s fear-widened eyes start rolling back in his head.
Sue shouts again.
“Don’t go under on us! Work it loose!”
Larry is still with her — for the moment.
His raspy, desperate half-coughs go on for what seems like minutes. But the whole episode is no longer than 90 seconds.
These scary choking spells are more common as Larry’s swallowing continues to deteriorate. The Freemans must be prepared for such emergencies at all times, even when he’s not eating. Larry’s own saliva can cause the same distress.
And if Larry’s condition ever reaches the point where he can no longer swallow or cannot recover from one of his choking spells — what then?
Sue returns a blank expression, then shrugs. She cannot give voice to the inevitable outcome:
There will be no feeding tube; no heroic measures to resuscitate her husband. Larry has signed a living will banning all artificial means of life support. His disease eventually will take its course.
This time, Larry’s half-hearted hacking finally stops.
The logjam of food has cleared. He is back to breathing normally.
Larry’s mask of a face grows slack once again, as if the violent episode never happened.
Chuck and Sue ease him back on his pillow, but they keep the bed raised for a long while, until he fully digests his food.
Sue reaches for Larry’s Ensure. He eagerly takes the straw into his mouth.
“It clogs right there in his throat and he chokes,” explains Sue, her own fright just beginning to dissipate.
It takes her far longer to catch her breath.
Chaos and clutter
Larry is having a bad day.
Sue’s is worse.
It begins with what seems the simplest of tasks. Returning from her morning school van run, Sue has it in mind to pay the family’s monthly auto loan.
She breezes into the house, checks on Larry, then sets to writing the check.
Only she can’t find the loan payment bill and its return envelope. The combined clutter of three families is consuming her once-orderly, but now-cramped, home. And the loan bill is lost in the ruin.
Sue is determined to find it.
She enlists Kandy and Paula it what soon becomes an infuriating and ultimately futile search.
Finally giving up on locating the actual bill, Sue attempts to make the truck payment by phone.
She calls two local Ford dealers before obtaining the number for Ford credit. She dials, figuring a representative can look up her account and credit her payment.
Instead, she descends into a catch-22 of automated answering hell.
A computer-generated voice demands the account number that she doesn’t have. Determinedly, Sue pushes the number for a representative. But before connecting her, the emotionless, computer-generated voice is back asking for her account number.
Ninety minutes of futility finally boils over.
Sue disconnects the call, tosses aside the phone and lets loose a frustrated torrent.
“They kept saying, ‘I need the account number,’¤” Sue shouts. “How in the world can I give you the account number if I don’t know it!”
A hospice social worker walks in on the turmoil. She asks what’s wrong.
“Where would you like me to start?” Sue shoots back.
For the next half-hour, they hammer out an action plan designed to siphon away some of Sue’s mounting stress.
“I hate seeing my house like this,” Sue says. “I feel like the walls are closing in.”
Paula and Kandy are stone quiet as the social worker lays out a solution calling for the two of them to do more housework.
The plan is memorialized in a handwritten to-do list that’s posted on the fridge. Among the chores, a spare bedroom that has become a repository for three families’ junk must be cleaned, and the claustrophobic kitchen that is swallowing up bills must be uncluttered.
“I’ve always said, I want this place cleaned up,” Sue exhales. “I’m not used to this.”
Paula and Kandy agree, but they make themselves scarce for the rest of the day.
“When families combine, there’s a lot of stuff,” Paula explains. “Organization is mom’s thing. And right now it’s chaos
Yet, it’s only the beginning of Sue’s trials this day.
Hospice sent large-sized adult diapers that don’t fit Larry’s slender athlete’s body. They keep sliding off.
Worse, Larry isn’t eating well. He had a restless night. And because Sue sleeps on a roll-out couch in the same living room, so did she.
“It’s one of those days,” she says. “One of those stressful days. I’d give anything to crawl in a hole, cover it up and have nobody find me.”
Instead, Sue plans an ambitious dinner — beef pot pie with homemade noodles. She’ll spend most of the afternoon simmering meat, dicing onions, slicing potatoes and mixing and rolling dough.
By mid-afternoon, an appetizing aroma permeates the house. Perhaps, this will coax Larry to eat.
‘It gets overwhelming’
Caregiver Nicole Bouder sees it as soon as she enters the house.
Her patient is in trouble.
Only it’s not Larry; it’s Sue.
The family matriarch looks dead on her feet, but she has dinner to finish.
“Are you OK, Sue? Talk to me, Sue,” says Nicole, a private-duty caregiver the Freemans hire for 15 to 20 hours a week. It’s the only major expense not covered by Larry’s Medicare and retiree health benefits.
Nicole is not a nurse, but she changes Larry’s adult diapers, washes him down and freshens him up.
Lately, she’s found herself looking after Sue, as well.
“Sometimes, it gets overwhelming for her with everything that’s going on,” Nicole says. “A lot of it is still on her. Even though there’s help, she’s still doing a lot of it.”
Nicole’s prescription: heavy doses of humor.
“I can usually get her to smile,” Nicole says.
Sure enough, Sue’s drawn mouth manages a grin. Unfortunately, it’s short-lived.
Nicole’s two-hour shift is finished, and Sue’s break is over.
The two women hug goodbye.
“She’s a good one,” Sue says as Nicole departs. Then, she pushes herself up from the kitchen table to finish dinner.
Sue grabs for the coffee maker to perk herself up. But when she pours water into the machine, it overflows onto her cluttered countertops.
Someone already filled it. It’s yet another sign that Sue’s house is no longer her own.
“It’s just everything lately,” Sue mutters as she dots a kitchen rag at the spill. “It’s just a little bit of everything.”
The brief reprieves
Moments of grace come like quiet bolts of lightening.
It’s the way 7-year-old Jasmine can still coax a smile from her sick grand-uncle. It’s how Kandy’s shy, stow-away rat terrier named Digger can snuggle up to Larry in his hospital bed.
Paula and Kandy are boarding their large collection of cats and dogs at Kandy and Bob’s house outside Duncannon. The two make regular runs to check on the animals and collect Kandy’s mail.
Digger is the only pet to get a pass. Larry is allergic to cats but loves dogs. He’s made a fast friend in Digger.
When the family comes together, it can be better than any medicine.
On New Year’s Eve, Paula and Kandy move the party to Larry’s living room.
Why should he be left out?
Having one of those rare days where his mind is quick and his tongue loose, Larry calls out answers as the family plays Trivial Pursuit on the Wii. He even has a beer or two. Other family members favor the harder stuff.
“Life is too short,” Paula insists. “We have to have fun.”
The two younger couples have their own bowling team, appropriately named “Family Affair.” They compete every Sunday night. Their record is nothing to speak of, but the night out is a welcomed release.
Sue’s passion is Bingo. Her nights out are Thursdays. She goes right from her afternoon van run to a friend’s house. From there, they head to Selinsgrove for the weekly game.
Sue covers a dozen or more Bingo boards at once. When the numbers are coming fast and her eyes are scanning multiple sheets for matches, Sue can forget just about everything.
But the reprieve is all too brief.
“Sometimes, I feel like I’m getting the short end of the stick,” she says.
Mostly, she puts on a brave front.
“I say to people, ‘I guess I’m really living up to my marriage vows now.’”
A day’s vindication
Larry could go on like this for quite a while — years, perhaps even a decade.
His life as a racewalker has left his body in remarkable shape. Immobile as he might be, Larry’s muscles still have tone. His weight is good.
Besides, those with PSP do not die of the disease. By itself, it’s not considered terminal. Its symptoms are the real killers — falls, choking, pneumonia, infection and lack of nourishment.
Some sufferers literally starve to death.
That’s not Larry. Not now, at least.
Sue’s home cooking does the trick.
After turning up his nose at breakfast and lunch, Larry is ravenous for Sue’s beef pot pie. An afternoon of smelling the homemade meal simmering on the stove has more than whet his appetite.
Sue’s day of hard work is vindicated. “My word, you really were waiting on this,” she says, smiling.
Larry cleans the plate.
Sue returns his dish to the sink, before finally enjoying a plate of her own.
Following her meal, Sue settles into the easy chair.
It’s 7 p.m., and she puts her feet up for the first time this day.
“I think I’m gonna take a little break,” she announces.
Having made some headway on the cleaning to-do list, Kandy hands Sue a wine cooler. The flavor is appropriate — “Jamaican Me Happy.”
Sue sips the drink and seems to sink deeper into the red-cushioned recliner.
She turns on a re-run of the 1980s TV sitcom “Family Ties.” Michael J. Fox, a Parkinson’s survivor himself, looks impossibly young.
Soon, Sue is smiling and laughing with the Keaton family. A few feet away, Larry sleeps. He’s quiet and content, if only for the moment.
“These were the best shows,” Sue says, still grinning at the TV. “The old-time family shows.”
Progressive Supranuclear Palsy, or PSP
The Cause: It involves damage to many cells of the brain. Affected areas include parts of the brainstem that control eye movement; areas of the brain controlling steadiness when walking; frontal lobes of the brain leading to personality changes.
The Symptoms: Changes in facial expressions; difficulty controlling eye movements, swallowing, coordination and speech; personality changes, including forgetfulness, apathy and dementia; repeated falls. All symptoms grow worse over time.
The Cure: None.