Last Friday was a long day, with a caseload including two extra
patients and thus flying from one session to the next by the seat of my
pants. If there ever is a dull moment in a hospital it will surely be
made up for with massive chaos soon thereafter. As I laid down to sleep
one particular encounter replayed in tandem with memories from the
Montauk Century three (four?) years ago.
Over lunch I
got a call from the nursing care coordinator that my patient had been
accepted to two different subacute rehab facilities, the first of which
is apparently one of the best in the city, but the patient was refusing
to go and was adamant about going home. By the history given by the
patient and obtained in the social worker's notes I had assumed the
originating nursing facility
was his home. Turns out he was
there for the last eleven months, having entered for subacute rehab but
was never released for reasons we don't know (safety, being fully
informed of a change in living situation, the facility reaping money
from insurance...?).
"He won't listen to us. They have
a bed waiting, and it only needs his agreement. Can you see him
today? Talk to him, something?" I agreed to do what I could.
Mr.
Y had been fun to see for the last two weeks. He is the hero of all
patients in nursing facilities - many facilities neglect patients and
leave them soiled in bed for half the day, and occasionally a jaded PT
comes around for "therapy" consisting of hip flexion (no functional
value those who have difficulty standing up, i.e. weak hip
extension),
knee extension, ankle pumps, and a return to a soiled bed. Many
facilities don't encourage ambulating when it is difficult because they
see it as "unsafe," thus leaving patients in bed or in wheelchairs and
allowing them to become even more deconditioned over time. Not Mr. Y.
His post-stroke mental faculties are relatively intact despite
difficulty with expressing himself verbally and weakness/increased
muscle tone in his left arm and leg. He is a fighter. I have seen
inspired patients, but never the likes of this. He is a man determined
to never let a nursing facility limit him. Instead of allowing physical
regression and depression, he will argue for however long it takes
until you let him do what he knows he can do. His survival in a sub-par
nursing facility is guaranteed. But his survival at home, in a third
floor walk-up apartment with no family or social support aside from a 70
year old neighbor who can open a can of food occasionally, and with the
need to leave home three days a week for dialysis, is not guaranteed.
He would at a home health aid and was borderline for requiring 24/7
care. The farthest he walked with me previously (and I had seen him
five days per week, mind you) was 60 feet, and he hadn't performed
stairs in a year if not more. And yet he refused to go anywhere else
but home.
We met at 5:30 a.m. with intentions to
head out by 6:00. Goal: 130 miles from New York City's Penn Station to
Montauk, NY on the eastern tip of Long Island. Our rag tag group was
having trouble hitting the road. One person went for a bagel. They
came back 10 minutes later. Another said that looked good, and they
went off for a bagel. Five minutes later a third member wanted to use
the bathroom. Once back ten minutes later First decided they also needed
the bathroom. Third waited five minutes before saying that maybe a
bagel was a good idea. Yup, that kind of group, and that kind of
morning. I'm trying to not play mom to the group and nag, but we need
to leave soon because the day will take longer than others assume. I
look at my watch, trying to be patient: 6:15, 6:28, 6:40. Finally
everyone is ready to go.
First looks over at Youngin' (fourth person), says "Dude, where's your helmet?"
"Helmet? What helmet? Iyyy... aaaahh... errraaahh... We don't really
need a helmet, do we?"
Fifth
(for those counting, including me makes six) glares in response. After
a bit of debate, we determine that his home is along the way to the
Brooklyn Bridge and so we will make a pit stop. We ride down, pull over
to the street's edge, take a few pictures and chuckle about previous
rides. Ten minutes later Youngin and Dan (formerly referred to as
Second) come back helmetless. His house keys went with his bag to the
finish, and he is too nervous to ring up and possibly upset his father
(Youngin' is 20 at this point). Dan offers his wife's helmet at home,
and they take off to get it. First decides to make a stop around the
corner for batteries while we wait. She and Third take off. Fifth and I
wait another fifteen minutes, pondering what exactly we got ourselves
into. Finally they arrive, the white helmet with hippie flowers works
well with Youngin's skin tones, we take off to meet the battery search
crew, and finally the day begins.
I have an aid
with me, because I know Mr. Y will want to prove that he can walk. Just
the day before he wanted to show that he used to walk without a walker,
and after five solid minutes of arguing I gave in and agreed to a
trial so long as we switch to the walker if he needs his hands on
something. He needed to palm the wall or grab my hand, not to mention I
had to give him minimum to moderate assistance for balance. We only
made it ten feet out he still refused to use the walker on the way back,
so the aid and I grabbed each hand to stabilize his return trip. So is
the persistence of Mr. Y, bless his intrepid heart. It's hard when you
want to maximize a patient's independence but their persistence,
regardless if from baseline personality or from altered perception
secondary to their condition, hinders their performance.
So
today the aid and I enter, and I begin the conversation about where he
may go. I want him focused, so that he knows that x, y and z must be
achieved if he's able to go home. Two home care groups have declined
him, saying they cannot offer 24 hour care and they find him unsafe as
per the notes from the last week and a half. (I agreed and had been
recommending even a short rehab stay.) Home care groups laugh at the
notion of getting even 12 hour care. I tell him anyone who goes home
must be able to walk up and down the hall twice, go up and down as many
stairs as they have at home, and do it all without any of my help (all
this is true, with fluctuating values according to their home setup). I
describe his current need for assistance, and that with his progression
and motivation if he got rehab then within a couple week's he'd be okay
(which I also believe is true).
"No. You cannot push
me. They all push me. Those places just want your money." He's
already sitting up to show he could walk, with large gestures and
pointing in our faces. "I kept asking to go home before and they kept
telling me no because they wanted my money. They did not take care of
me. They just took my money and ignored me. I'm going home. You
cannot push me."
You can tell he retains the notion of
safety and retains awareness of his abilities, because otherwise he
would have been attempting to walk out of the hospital days ago and
would have ended up with one-to-one supervision and been labelled as
"impulsive." But instead he has waited for me, even with his anger and
huge motivation building ever more. I try explaining that we have a
different
facility lined up, one that has very good feedback in terms of rehab
and their outcomes overall. These people will help you get stronger.
He hears nothing of it. It only makes him angrier.
Talking
has hit a wall, so I switch to a plan. "Here's what we have to do." I
give him parameters, same as before. I reinforce that at home he won't
have us to help, so he's gotta do it on his own. He agrees, pops up,
and refuses to use the walker. I'm guarding him while trying to
persuade otherwise, and his level of assistance and balance are like
before. We get to the door, eight feet out. He's still refusing to use
the walker, but he has stalled, I think because he realizes how much he
needs support.
"You can walk farther if you use the
walker. It will help. You can go home with a walker. I need you to
walk a long way with the walker so we can
show the social worker
what you can do." That finally gets through. He takes the walker
without even looking down, starts marching down the hall with the aid
and I flanking him, hands hovering six inches off his shoulders and
hips, not knowing if or when he might go down, not knowing his endurance
or his mental clarity once fatigued.
Fast
forward through many hours of riding. Light rain. Youngin' takes a
skid witnessed only by Fifth, comes out unscathed but a little hurt in
his ego. Panda Portraits. Then pouring rain. Flat tire (me).
Mercifully a sponsoring bike shop come along with a tube since there's
no chance of vulcanizing fluid drying in this downpour. Multiple aid
stations later, we are not the only ones who are seemingly "behind."
More riding. The rain stops, but our socks are soaked and we've lost
body heat. My feet are completely numb.
Next aid station I pull off my socks to wring out extra water. We've come about 70 miles, just over half way. Fifth uses a
winter hiking trick and puts my foot on his abdomen. Wowza
does
that work well. While I recover and stuff my face, Dan decides to take
off early so we can catch up in a short bit. We grab a bunch of food to
stuff our faces while riding on, only to be intercepted by a race
volunteer who reports that we have been cut off and must decide whether
to continue on, without knowing if aid stations will still be open, or
if we want to get on the sweep bus to be taken to the finish. My heart
sinks, my face heats up, and I go completely stoic and cold to First,
Youngin' and Third who don't seem to care either way "since we got a
good ride in regardless." Completing a task is deeply imbedded in my
genetics.
"Dan is out there. We need to decide and call him ASAP." My voice comes out hard and, unintentionally, with disdain.
One
attempt fails, then another. Different cell carriers make no
difference. Fifth turns to Youngin' and, since Youngin' didn't just
have frozen feet, tells him to go pick up Dan and bring him back, but
Youngin' hasn't moved an inch because their still talking about
something. I'm was so angry I wasn't even hearing what their banter was
about.
I should explain Dan a little more. You
can tell he grew up an athlete. Pitcher, quarterback, and a history of
acting (his current and now long term passion). But he also has
epilepsy, the type that encompasses the entire brain in a way that is
inoperable. In his daily life it manifests something like attention
deficit disorder. But the man is pure teddy bear, and is wildly
successful at everything he's done. You should see the way he glides
through traffic. It's like watching a bicycling version of Stevie
Wonder. You swear
he's gonna die, and get in perfect, poetic
fluidity he never even has to so much as flinch. But if you could boil
down the human race to perhaps five souls whose heart, actions and life
could make us seem actually redeemable to a hostile alien invasion and
change their minds - he'd be on the top of the list. He holds nothing
back, he hides nothing, and with more heart and positive joy than most
others I know he can accomplish literally
anything. He is so
endearing that I am defensive of him and care deeply for his success.
He learned from our two previous rag tag centuries that if he takes less
time at aid stations and starts ahead, he can go at an appropriate pace
and avoid over-stressing himself, and we'll eventually catch up. But
there's a catch to that. Yes, we will catch up to him. But it takes a
half hour to catch up to him at our normal pace when he only left five
minutes before us.
They are still discussing something when I hastily don all my gear and helmet.
"While
you all keep f***ing chatting Dan is getting farther away than you
think. Don't f***ing underestimate him. He's going to be hard to
catch. You DO NOT f*** with Dan."
And
before anyone is able to respond I tear down the ramp and around the
corner. Fifth yells for me to call once I've got him. I'm worried we
won't make it back in time to catch the bus and our out-and-back jaunt
will have been for naught while simultaneously wasting more time needed
to get to the finish in time for the last train back to the city.
Mr.
Y makes it fifty feet down the hall. The turn is a little sloppy, but
we're trying to place hands on as little as possible.
"See?
I can do it. The only thing stopping me before was being dizzy." Are
you dizzy now? "Only a little dizzy. I can do it."
He
makes it the fifty feet back, so I bring up the notion of stairs. Mr.
Y's room is near the nurses' station, which is also next to the small
lounge that has a mock four-step stairwell. As we turn to head in, I
see the care coordinator and the social worker watching with their heads
propped on their hands, in disbelief and with no clue what to do next.
We get to the stairs, get his hands on the rails and move the walker
out of the way. One foot on, second foot on, and both knees immediately
buckle. The aid and I are still hovering, so we catch him and move
even closer. Moderate assistance for the stairs. On the way down the
aid spots from behind while I spot in front. Stairs remain a no go, a
big red stamp on his chart marking unable to go home, but Mr. Y doesn't
register this. Once safely back with the walker I ask his opinion of
his performance. He asserts that he can do it, that he'll get stronger
quickly and it won't be an issue. I point out that was only four steps
and that he'd have to do closer to thirty at once.
He still shakes his head. "I can do it."
We
swing down a second hallway. At this point the stairs already
indicated that he's not safe to go home, but we're going to use the
opportunity to go big. If he can't go home, I want him on paper to be
seen as ambulatory so he does not get stuck for another 11 months at
the new rehab/nursing facility. [For those who don't know, subacute
rehab is usually offered by nursing facilities rather than as a stand
alone entity or as part of a hospital. Distinguishing between short
rehab stay, long term rehab stay, and simply requiring 24 nursing care
are big differences.] The care coordinator and social worker alternate
between shaking their heads and laughing thanks to the difficulty of the
situation. How to persuade him otherwise when he is so determined to
have his way? I cannot speak for others of the team, but I don't want
to condemn him to a nursing facility the rest of his life. And yet I
know he's just not quite ready. We cannot
force him to go. He
is still in charge of his care.
But we cannot in good conscience let him sign a paper saying he
understands the risks of declining our recommendation of rehab, only to
then be readmitted 4 hours later from a fall on the stairs his first day
home. And I wish we could have teased out this performance much
earlier so that we could have made stairs into a goal. Sure, maybe he
still would have needed rehab. But with what we currently have as his
performance limitations I want him
safe.
I've
been peddling in as high a gear as I can tolerate, whipping around
corners, hoping with each turn to see any semblance of him. So many
turns. I think they are all reasonably marked, but if you look around
to watch the view you could easily miss one. I see someone up ahead,
scream his name and sigh relief, only to roll up on a different lone
rider I don't know. Crap. Lone Rider probably thinks I'm crazy by the
way I pass like a frantic bat out of hell. I keep trying to call Dan's
phone, keep failing.
It takes ten minutes of sprinting to catch him, steady as ever.
"DAN!"
"Bucky! Where's everyone else?" I slow to a stop, Dan stopping in suit.
"The sweep wagon caught us. The group is waiting back at the last aid station. We have to turn around."
"What?!? You're serious?"
"Yea dude. We gotta go before they leave without us."
We
take off, maintaining the fastest speed Dan is capable of. My phone
rings. It's Fifth. "Where are you [static] ...trying [static] leave
[static] ...fast..
."
I scream into my phone. "Three minutes. Give us three minutes. Stall." The call drops. I mutter obscenities.
Dan
looks over, worried. "Is this because of me? Because of my epilepsy?
Damnit. I knew it would hold us back. I'm so sorry. Damnit."
"NO.
It is NOT because of you. You've been one of the steadiest riders
today. It's because people kept screwing off, wasting time, and because
of Youngin's helmet shenanigans that we've run out of time. It has
NOTHING to do with you. Those a**holes put YOU in a predicament."
I
get another call, again with lots of static. "Two more turns and we're
there. Thirty seconds!" We race into the lot, all waiting on the bus
except Fifth, who has loaded his bike onto the truck but has refused to
get on the bus and let it pull away. We throw our bikes on top of the
pile, and as I walk onto the bus out of breath I don't dare look at
First, Youngin' or Third, who are relaxing like its a party. My hands
are shaking I am so angry. They try to re-enact Fifth's manipulation of
their rule, how funny it was to hear the bus driver yelling at him to
board and yet have him taunt by standing 100 feet away and make the walk
to the bus last for minutes, repeating "Yes I am getting on the bus.
I'm walking there now."
I'm fighting back tears. You joke around for an hour and a half, THEN admit to forgetting a helmet, then pull some I'm-afraid-of-my-dad crap (wouldn't he be glad you wanted to be safer with a helmet??), then put Dan at a HUGE risk. And you find the situation laughable. My
response? "That's nice," without even pretending to take my eyes away
from the window. Dan's response? He sits next to Youngin', and plays
thumb war with him. Dan doesn't take things personally, nor does he
hold grudges. I take note, try to breath, try to stop the waves of
anger pouring from the throbbing veins on my forehead. Third sits next
to me. I stay facing the window. The bus pulls out. I close my eyes.
One
hundred fifty feet. Two hundred feet. We pass by the nurse's station
yet again. By the time he gets back to his room and into bed he has
walked 250 feet with contact guard. Time to talk reality again.
"We
need you to be safe. I know you will get stronger soon, but for now
you need help because of the stairs." Mr. Y is nodding. Maybe the
opportunity to prove
something has made him more agreeable to compromise?
I
tell him my recommendation, that he only way he can go home is if he
has a walker and, more importantly, he has an aid. "You HAVE to have an
aid. If we cannot get you an aid, then its too dangerous and you need
to go to rehab for a SHORT stay." He nods after each statement. "I
want you to be safe. No falls!"
He smiles as I say
no falls. He understands. I think he just wants as much independence
as he can get. And I can absolutely respect that. He shakes and
verbally repeats that he must have an aid to go home or else rehab is
okay. I leave his room exhausted, and find another home care rep and
the social worker in the hall outside the room. I describe what he just
did, and my assessment of needing help for stairs.
The
home care rep repeats that even twelve-hour care would be near
impossible to get, and brings up the issue of how he will perform self
care. Cooking, bathing, dressing. I sigh and inform her that while I
can infer such things, they are properly assessed by occupational
therapy; that I can only assess and recommend for gross physical
activities. The social worker brings up the need for stairs three days a
week for dialysis, at which I repeat that he'd need an aid. My
official recommendations will be: home PT with 24/7 home health aid for
safety and assistance with stairs, otherwise patient will require short
term stay at subacute rehab. Beyond that, from what he's given me to
work with today, I can say no more.
We all sigh and nod
the unspoken understanding that it all boils down to what Mr. Y wishes.
I trudge off to find a computer so they have the note to fax to
whoever. If more home care companies deny him, then that will be
presented by the social worker to help reinforce the need for rehab. We
shall see.
After a while of watching the horizon swell and fall, the clouds roll past in gray lines, I
start to calm down. I glimpse over at Third, who has brown dots all
over her face. I hadn't noticed before. I asked if she had been drafting. The head wind was taking its toll, so Fifth offered to pull her ("pull" meaning take the heat and shield the person behind). It was her first draft experience.
"Did it help?"
"Yea, but it was hard to breath and hard to see where I was going what with all the dirt thrown in my face." I hadn't the heart to tell her that the draft is pretty wide behind a guy his size, and that he could have fixed his rear fender alignment.
We chatted a bit longer until the bus pulled up to another aid station. Turns out this one was 30 miles from the finish, and any able rider was instructed to complete the rest of the route. We hit the port-a-potties (much more efficiently than this morning), and upon regrouping realized that by the end of the ride we would have accumulated a full century, one hundred miles. Seems the day was salvageable after all. I was the first to the ride's finish, collecting and greeting the others as they rolled in. Dan's face was just as much of a big smile as the other two centuries we'd done before. I've said it before and I'll say it again. Never. Doubt. Dan. Dan the Century Man.
At work Saturday I pulled up my patient list for some logistical documentation stuff, and saw the Mr. Y was discharged. A quick peek into the social worker's notes revealed that Mr. Y agreed to rehab. They left him all sorts of information, lots of people he could talk to himself. Even after he agreed, they left information on how he could appeal the decision should he change his mind. Mr. Y then stated he would not appeal, that he was okay with a short rehabilitation stay. I found myself smiling.
Whether he had to prove it to himself or to the rest of us, the man was going to illustrate the full depth of his independence, both physically and cognitively. I think he needed to know that we were not ignoring him or looking down at him, that we were on his side yet albeit overly controlled with his safety. I only hope that from the moment he landed at the new subacute facility that he verbalized his game plan of working on stairs, lots of stairs, and, oh yes, more stairs so that he could go home. And hopefully they have some good occupational therapy there too, to get his activities of daily living bumped up a notch too. He remains in my mind someone who, despite all odds, will never let life take away his ability to
try.
