Advocating for my disabled brother, Robert, who has intractable epilepsy, unwavering faith and a delightful ability to declare everything excellent. Robert shows me everyday the power of the Magic of Excellent.
Sometimes there aren't any good decisions in caregiving.
Mail call! A card and bookmark from Carol
Decision number one: Do we send Robert
to the hospital?
Robert couldn’t walk.
I mean he couldn’t even turn his legs to transfer from getting out of
bed to the wheelchair. I could see him thinking about it. I could see that he really was trying to get
his brain to tell his leg to MOVE! but the signals got crossed and he just
couldn’t do it.
I called his neurologist who had just seen him the previous
week and explained that his decline was even worse than before. Since they had suspected a compression of the
nerves in his neck, I was advised to send Robert to the hospital. It seemed to be the quickest way to get the
MRI done in order to confirm that diagnosis and if it didn’t confirm it, to
figure out what exactly was going on.
Every time Robert goes to the hospital there is a
significant decline afterwards and a significant amount of work involved in
getting back to baseline. Usually he
falls just short of baseline so we end up with a new baseline.
I don’t take sending Robert to the hospital lightly. Partly
because I am selfish and realize the post-hospital decline not only affects
Robert but me and Richard too. (There
has to be honesty and self-awareness in caregiving. It helps.)
Robert couldn’t walk so there really wasn’t a choice for
me. My concern was if there was a spine compression
and he was losing mobility so quickly, what more could happen? He needed answers as soon as possible so the
paramedics were called and the ER wait
A wonderful surprise from a Guardian Angel!
two: Do we take Robert home or find a
rehab facility that provides physical therapy?
Um, he’s been in a hospital bed for over a week and couldn’t
walk when he arrived. I’m pretty sure he
still can’t walk and has now lost muscle strength.
Richard and I were already past the point of being able to care
for Robert. The decline happened so
suddenly (or felt like it) that we just did what we could to keep up. Sometimes even to our own detriment. Like the time Richard physically lifted
Robert from the wheelchair and moved him to the bed (and then suffered through
extra back pain for several days).
Let’s go with a rehab facility.
(It helped tremendously that Robert was completely agreeable
to this plan. Many times when making caregiving decisions, the caree and
caregiver are at odds at what would be best.
That makes the decision-making even more difficult. It’s just the worst.)
three: Which rehab facility do we use?
Our first option for Robert was to get him in the hospital
in-patient rehab center. I was told some of the new doctors/residents don't
even know about it.
Even though many of the nurses and a couple of the doctors and physical
therapists raved about this in-patient rehab center they all warned me that
Robert would have to be evaluated by a team and they would be the ones to decide
if he could be admitted there.
If he was accepted it would be so easy! The hospital would discharge Robert and then
wheel him to the rehab center (which was in the hospital but not considered
part of the hospital). He would get checked in and they would do 3 – 4 hours of
rehab per day! Wow!
The goal would definitely be to get Robert able to move and
transfer so he could come home.
It felt like an exclusive, secret club and I wanted entrance
granted for Robert. Please, please, please!
One doctor evaluated Robert.
Then he came back with another one.
They asked Robert questions, then asked me questions. Dang it – I don’t even know what they are
looking for so am stressed out about giving the “right” answers. Plus I didn’t have time to study!!!
After a while I realized they were not going to accept
Robert into the program. Wait – I want to change some of my answers! “He probably won’t be able to meet the goals
we set each week.” Could you please just try him out to see? Maybe he’ll surprise you!
In my heart, I knew Robert couldn’t tolerate 3 – 4 hours of
physical and occupational therapy. I mean, his favorite time at Day Program
is when it’s Recliner Day.
This now means we have to scramble to find a rehab
facility. The discharge planner helps
with this and sometimes you get a really great discharge planner who goes the
extra mile and sometimes you get one who just does things by the book.
The entire hospital stay has been challenging so it did not
surprise me that the discharge process was not smooth. I expected it to be
smooth because I usually have a terrific experience at discharge but not this
The discharge planner gave me several options for Skilled
Nursing Facilities that have physical therapy programs to accommodate Robert. I asked her which ones she would recommend.
She couldn’t say.
Okay, give me a hint. Sounds like?
Instead, she asked me if I had a particular one in
No! I’m asking you for help to find a good one. She did help by sending out an email to all
SNFs, giving Robert’s info and asking if anyone had availability. She referred
me to the www.medicare.gov site so I
could check ratings. It was some help but it wasn’t anything extra.
This would have been a good time to have someone doing
something extra. I was frustrated. It
had been a long two weeks (or close to it) and I just wanted someone to make
this decision easy for me.
That wasn’t to be so I got on the phone and called a few
facilities. I contacted Robert’s Day
Program for references. I called Robert’s
case manager at his Regional Center. I checked ratings, checked availability
and checked what the PT schedule would be. The last thing I want is to choose a
place that is going to just let him lie in bed all day and do 10 minutes of
physical therapy on occasion.
After all of this, the place I settled on is a place Robert
has lived before. When I first moved Robert to Sacramento, he went to a SNF for
about two months then I moved him into a Residential Care Facility for the
Elderly. He was there on a waiver and
under an exemption (since he is in his forties). Robert lived there for a couple of years and
enjoyed it until we ran into some problems with the management and it was
apparent that Robert and the facility were not the right fit for each other any longer.
It was not easy choosing this facility but I knew he would
be in the SNF portion of the facility and not the Assisted Living area. I knew that management had changed since
Robert last lived there (a few times, actually). I hoped that the familiarity
of it would somehow aid Robert in regaining mobility.
I even thought the Universe was trying to tell me
something. The SNF had an available male
bed; the PT department was stellar and could work with Robert two hours a day
for 5 – 6 days a week (which seems doable for Robert); the location was halfway
between home and work and there was a bit of comfort in going to a familiar
Robert was on board with whatever place I chose. He told me he remembered this place but I’m
not sure he does.
Once we arrived, I didn’t recognize anyone but the intake
social worker remembered Robert. Robert said he remembered him too. Who knows
if he really did but it makes me feel better that Robert at least thinks he
remembers this place (and fondly).
Robert happily settled in while I pushed away the thought that
if this doesn’t work out I have no one but myself to blame. After all, I know the problems we had here
before but I am optimistic the Universe knows a thing or two about what is
Decision number four:
Having faith in the caregiving decisions I have made.
Robert has declined so quickly this year and had so many
different things going on, my head has been spinning. I just want to find out what’s wrong!
Looks like Robert's appetite is back!
Questions have swirled this year: Why is he getting
pneumonia so frequently? Do we use antibiotics when he has bronchitis and risk
resistance to them or risk the bronchitis turning into pneumonia? (Side
question: Why aren’t there any good choices?) Why does he now sometimes have
both urinary and bowel incontinence? Do
we blame the antibiotics or is there something more going on? What’s with the increased seizures? The
irritability? The trouble walking? The sleeping 18 hours a day? The eating half of what he used to?
We got a possible diagnosis of Cervical Disc Disease with
Myelopathy at the last neurology appointment.
didn’t sound good. The neurologist
needed an MRI to confirm what he suspected but Robert couldn’t tolerate the
MRI. They decided to do an MRI with
anesthesia and wrote a referral for that.
Just a few short days after that, Robert was literally unable
to move his legs. Richard (yes, my
husband with the severe and chronic back pain) had to lift Robert from his
wheelchair to the bed. The day after that, Robert slept and slept and slept.
Neurology suggested we take him to the ER and get a CT scan
done and then the hospital could do the MRI with anesthesia. It was a Tuesday
afternoon. How bad could the ER be?
Almost as soon as Robert was settled in his hospital room he
started throwing up and running a fever off and on. What in the world?! Day Program informed me the following day that
other consumers had been throwing up lately. Great. Robert has a stomach virus
on top of everything else.
And, it’s contagious. Thank
you very much.
After several days of waiting for the MRI with anesthesia
(we had to wait for the stomach virus to subside, then there was the 4th
of July and then a weekend and then a promise of “maybe we’ll do it Monday but
for sure Tuesday”).
By late afternoon Tuesday, the neurologist was not hopeful
and was as frustrated as the rest of us.
For whatever reason, the hospital does not actually schedule MRIs with
anesthesia for people actually admitted to the hospital. They “squeeze” them in between emergencies
and the general public appointments (as in, if I had taken Robert home and then
made him an appointment, he probably would have gotten it a lot faster).
The neurologist did what she could and called hospital
administrators (the hospital neurologist is not his usual
neurologist). They pulled some strings
and we were on our way to the basement of the hospital housing the MRI machine.
It was miles away from his room and I did my best to keep up
with the transport team pushing the gurney but I wasn’t about to complain. We were getting this done and we will be able
to actually find out what is wrong!! Woohoo!!
Until I hear the word “cancelled” on the mikes hanging around
the necks of the transport team and they stop cold.
Oh hell no.
We were no more than ten feet from the door leading to the
MRI. This test we have endlessly waited
for. A voice from the room said, “He has
hardware in him still.”
NO HE DOESN’T!
I made my way around the transport people and past the
gurney into the MRI room. Mr.
Radiologist, MRI technician and the transport people looked as if they just
might call security.
He does not have hardware in him. The VNS
and DBS have
been removed. I was assured by the
neurology team at his former hospital – he can have an MRI.
GET HIM IN THERE!
Mr. Radiologist towered over me but respectfully talked to
me, even while I ranted and raved and told him he was flat out wrong.
He insisted there was a piece of the VNS still wrapped
around the vagus nerve and that Robert’s nerve could be burned if he had the
But he’s had an MRI since the equipment was removed! We’ve
waited for a freaking week for this test!
This is ridiculous!
All Mr. Radiologist could do was say how sorry he was. He was not backing down. The transport team
was already leaving with Robert, walking back to the room and I just threw up
my hands and stormed back right behind them.
As soon as we got to the floor, I looked at the nurse – who was
as surprised and disappointed to see us as I was to return – and said, “Call
One of the neurologists from Robert’s team showed up within
minutes. She was mortified and apologetic and by this time, I was in tears. A
moment later, Mr. Radiologist peeked into the room and I dropped my head into
I’m sorry I lost it but we need to find out what’s
wrong. We’ve been waiting for a week for
this test! I just can’t take this!
He was very sympathetic but again explained how dangerous it
would be for Robert to have the MRI. I
told him I understood and appreciated him coming to the room to further explain
I get it. I do. I just want answers.
The lead neurologist on the team came in a short while later
and apologized profusely. She missed the hardware on the CT scan. She should
have seen it and didn’t. She was kicking
herself and felt absolutely horrible. She assured me the entire team would
learn from this which really was of no comfort to me at that point.
She made it happen and the next morning preparations were
made for the CT scan. By noon we were
done and after waiting an hour for transport (perhaps the story of the lunatic
sister was making the rounds and they were drawing straws for the job), we were
back in the room waiting for the diagnosis.
The results were that there was some narrowing of the spinal
column in the C5/C6 area but there was enough space left that they were
comfortable ruling out Cervical Disc Disease.
The neurologist said she thinks all of Robert’s symptoms and
decline are a result of Cumulative Traumatic Encephalopathy. Since all I had was time at the hospital, I
had done research on this so asked if it was CTE or CTEM.
I didn’t really mean to play “stump the neurologist.”
The neurologist confirmed it was CTEM, the slightly more aggressive
and serious cousin of CTE.
This is not something that can be fixed and it is extremely
serious and progressive (sort of like ALS, aka Lou Gehrig’s disease).
But it is a diagnosis and I find great comfort in knowing
what we are dealing with. While we can’t
predict exactly how this will progress in Robert, it makes sense. His lung muscles are getting weaker, he has a
swallow disorder and his leg muscles are unable to get moving. His brain is
forgetting to tell his muscles to work.
For me, not knowing what is going on or what to expect is
worse than knowing.
For me, there is comfort in a diagnosis.
For Robert, he knows he is going to get physical therapy for
a few weeks at a Skilled Nursing Facility. He knows he is getting meals served
to him and he’s looking forward to the activities at the SNF.
I am pretty sure today is Monday and, yep, we’re still here.
Rocky Road makes the wait much easier
Anyone who has spent any time at all in the hospital or
visiting anyone in the hospital or knows anything about hospitals knows there
is one constant: waiting.
We are waiting for an MRI with sedation (because Robert has
back pain when he is lying flat so can’t stay still during the test).
We are waiting to find out what is causing his rapid decline
(why he can’t walk; why he is sleeping all the time; why he can barely circle
his words on his Word Search puzzles).
We are waiting for doctors and blood work results and
We are waiting for physical therapists, occupational
therapists, answers and a plan.
On Tuesday we waited for eight hours in the Emergency Room
before being admitted and getting wheeled to his current room. We have had
longer waits in the Emergency Room so eight hours seems long but not unheard
What kind of crazy world do we live in that an eight hour
stay in the Emergency Room doesn’t seem too bad?
I think the problem was we came into the ER on a Saturday
night. Oh, wait, no – we came in on a
Tuesday afternoon. A Tuesday afternoon
and Robert was first put in a hallway and eventually a room.
Where we waited and the doctors ignored my insistence they
call the neurology team which is what his neurologist wanted. She specifically told me the team would be
notified before I even brought him to the ER!
Call them, please!
It took four hours for the doctors to finally decide to call
the neurology team and this was after me asking them to do so; telling them to
call them; calling them myself and finally unloading on a medical student (who
had repeatedly told me she was a fourth year med student).
You’re in your fourth year of medical school! Let me just ask you to
please, please listen to the caregivers when they give you information. Caregivers know their caree. Caregivers will give you all sorts of
information about what is baseline for this person you’ve never seen
before. Since you’re a student, it is a
good thing to learn early on that caregivers can be a huge help and resource to
you! Now, Please. Call. Neurology.
I felt better after giving my little speech.
And neurology showed up soon after.
While Robert and I waited in the ER, Richard arrived with
new energy and a smile.
What a welcome sight!
Richard went to get us food which turned out to be the best
grilled cheese sandwich I’ve ever had.
(Although it could have been the starvation influencing my
judgment.) Regardless, I was beyond
grateful for Richard getting us the food so I wouldn’t miss the opportunity to
talk to the doctors.
Robert tried to pass the time working on his puzzle book but
had trouble circling the words. He slept
during part of the wait and I stepped into various hallways on a search for
internet access. I finally was able to
text by creating the text then holding my phone up in the air in a particular
hallway and sending.
Waiting allows me time to find these creative solutions.
Waiting also gave me time to talk to Robert to ask him silly
questions. He had a purple band on his
wrist which the hospital had put on him upon arrival.
I like the color purple, Robert!
“I do too.”
What is your favorite color?
“Blue. I like yellow too. And purple.”
I knew he loved blue but didn’t realize he liked yellow and
What is your favorite food?
(Of course, I expected to hear “cheeseburger” or “combination pizza.”)
“Steak and Lobster.”
Wow! Someone likes to live high on the hog!
What is your favorite drink? (This is an easy one – he’ll say chocolate
shake for sure!)
What? Anything else?
Well, okay, but I still think chocolate shake is his
What is your favorite dessert? (Everyone knows this answer!)
Oh goodness. Robert
must be really sick if he doesn’t even rank Rocky Road ice cream as his
What about ice cream?
“I love ice cream.”
The long wait is obviously turning his brain to mush.
What about Rocky Road?
Robert's eyes lit up.
“I LOVE Rocky Road ice cream. It is deeee-LISH-us.”
We eventually made it out of the ER and into a room.
Where we wait for an MRI with sedation and answers and
theories and plans.
And where I sneak in a little bit of Rocky Road to help with
Robert is on Day Three in the hospital. We got here by way of the Emergency Room but
it really has just been a matter of time before he had to come in. After all, Robert was hospitalized three
times last year for pneumonia and sepsis and had bronchitis four times this
year but without any hospitalizations.
The way things have been going he really was due for a
He isn’t here for pneumonia (although he has a bad cough and
is starting to run a fever). We brought
him in because he can’t walk.
That’s unusual for him.
Robert has had a steady decline in his health since I took
over his care in 2009. I mean, that’s
one reason I took over his care: he was declining. Falling more frequently, not making safe
decisions, not recognizing when he had a raging infection – even allowing a
homeless woman to live with him and his companion.
Yeah, he was declining.
Since I’ve taken over his care, he has needed to use a
walker at all times, has recurring pneumonia, needs to be cleaned after using
the restroom, has urinary incontinence and sometimes bowel incontinence. He has
a swallow disorder so is on a modified diet, has constant congestion and a
cough, has increased his seizures and is on a new anti-seizure medication which
(it pains me to say this) has reduced his seizures. (It pains me to say that
only because I’ve blamed his rapid decline this year on these new medications.)
This year I have needed to help him get out of bed, use a
shower chair so he didn’t fall and help him put on socks when dressing. He
slept until noon on the weekends.
The decline really seemed to be speeding up.
Three weeks ago, he had increased difficulty moving his
legs. I put him in a wheelchair for Day Program. A few days later, we had to
start using it at home too. Richard and
I helped him transfer from the wheelchair to the toilet or shower chair or
recliner or dinner table chair. Robert slept until noon on the weekends but
also needed to stay home from Day Program a couple of days a week to sleep in.
Each day after that, more help was needed until he could not
move his legs – particularly his right leg.
I could see him thinking: Leg – MOVE! But it wasn’t listening. It stayed firmly planted wherever he put
it. Transferring him became a real
struggle. He slept until 3:00 in the afternoon and ate half of what he used to.
Now that’s a real problem!
His neurologist settled on a new diagnosis: Cervical Disc
Disease with Myelopathy.
Labs were run and an MRI was scheduled to confirm this new
theory. Unfortunately, Robert had a
great deal of back pain while lying down for the test and couldn’t stay still.
An MRI with sedation was ordered but not yet scheduled and neurology
cautioned we should go to the ER if he continued to decline.
Robert slept all day at Day Program on Monday, even falling
asleep in mid-sentence and during lunch.
I mean, he didn’t even eat his pudding!
By Monday night, he could not move from the wheelchair to
the bed without Richard and me lifting him.
Okay, things are declining faster than I can even keep up.
I let Robert sleep in on Tuesday but debated about taking
him in to the ER. I called neurology who
agreed he should be taken to the hospital.
They thought he could get a CT scan of his neck done and then the MRI
with sedation if needed. It was Tuesday
afternoon so I thought it would be a great time to take him to the ER. I got
him cleaned up since he hadn’t been out of bed since the previous night and
called the paramedics. There was no way
Richard or I could get him in or out of the car so the ambulance was the best
Robert was agreeable about going to the hospital and our
local fire department greeted us like old friends since we hadn’t seen them
since last December. It is really nice when people remember us and I love our
fire department but I really wish we didn’t have to have them on speed dial.
Can’t we just know them because we brought them cookies when
the kids were little?
Robert was loaded into the ambulance and was whisked off to
the hospital. I gathered my essentials
(phone charger, note pad, logs for seizures and vitals and other symptoms) and
kissed Richard and the dogs goodbye.
Richard planned to meet us in the ER later in the day.
My optimism about a quick and quiet visit to the ER was
squelched before I even made it to the emergency department check-in desk.
Visitors and patients waiting to be seen were overflowing into the hallway and
parking lot. I gave the front desk Robert’s name and was given a visitor pass
with his room number on it.
Which was a hallway.
Robert was on a gurney hooked up to an EKG machine. The
other patient in this hallway asked a passing nurse for crackers and juice.
Goodness – how long has he been here? I wonder if a change of address form is
going to become necessary.