It has been little more than a year since Carol was
diagnosed with dementia. At the time, we
had no idea about what to do or whom to ask about what could be done to help
her. Luckily I had a medical
professional in my corner, Nurse Jackie, who told me Carol needed a head CT
immediately if not sooner. Also luckily,
I guessed Grouch Marx’s “secret word” that would get a doctor’s attention to
get the ball rolling [in our case, the word was “hallucinations”]. Lastly, I have a work environment [co-workers
and my employer] that understands our predicament and unanimously told me “take
care of your family first”. Two of my
closest friends/co-workers [Bill and Tom] told me “it’s going to take time, but
things will work out”. So far, they’re
right. Not everyone is so lucky…
The most frustrating part of our experience has been
learning how to navigate the twists and turns of medical bureaucracy. Sometimes I felt like an expression I saw on
a T-shirt years ago – “Patience? Hell…I’m
going to kill something!” Of course,
that shirt was made in the context of deer hunting rather than me being a
homicidal maniac. One time it was having
to fill out the same paperwork many times for different people in the same
hospital. The hospital in question is a
Catholic hospital, and one would think that since the Catholic Church has more
money than God, they would have enough money to invest in information-sharing
technology. To give them credit, some
branches of this hospital are good at sharing information. For instance, Carol’s neurologist is in
Pensacola, 45 miles to the west of us.
The labs where we can get her lab work done for the neurologist done are
30 miles to the east of us, in Sandestin.
Those locations in Sandestin, like the neurology office in Pensacola,
can access the patient portal. But the
imaging lab and the blood work lab in the same hospital as the neurology office
hospital still rely on paper copies of everything. Although they are in the same building, they
don’t have access to the patient portal.
Go figure…
I got a boost of confidence a couple of months ago from a
friend of mine who lives in New Jersey.
He is a psychiatric nurse. He
read my last blog about Carol and her visions of the tree people. Rather than argue with her about whether or
not the tree people exist, I just tell her that although she can see them, I
can’t. And then I ask her questions
about them, and she tells me. I got a
message from him telling me that my handling of the “tree people” issue was
“textbook”. I thanked him for the
feedback. It was good to hear from a
professional that I was doing something the right way. Thanks, Ed!
Carol and I went to Wisconsin to see her sister Lisa and
her family for Thanksgiving. It was my
first vacation in five years, and it was the first time Carol and I made a trip
out of town without our kids – ever. Lisa had been to see us in June, and we told
her we’d do a return visit in November. I
cashed in frequent flyer miles, and it cost us a whopping $22 to fly
round-trip. Lisa practically ordered us
to do as little as possible, and we obliged.
Our money was no good in Wisconsin.
Lisa had noticed a marked improvement in Carol’s demeanor since her June
visit. Carol was more “with it”, was
engaging in conversation, and was “happy”.
Carol told us she would like to see her parents, so Lisa and I put our
heads together and said we’d all meet in Fort Collins [that’s where her folks
live] in June 2020. We missed the last
family reunion years ago, so we’ll be making this one. Wisconsin was good for the soul. We’ll see about Colorado.
We saw Carol’s neurologist the day after Christmas. He asked if the medicine he prescribed seemed
to be working. He asked specifically
about Quetiapine [Seroquel®]. Having
done my homework about each of the meds he prescribed for her, for once I felt
smart enough to answer his question. I
told him “if the idea of the Seroquel is to get her to stop seeing the “tree
people”, so far it isn’t working.” He
doubled the dosage for that medication.
He shared with us that many neurologists are loathe to prescribe
anything to help their patients, and he was incredulous that some doctors are
that way. I think we lucked out when we
got this doctor. Carol has improved a
lot with his treatment. I told him that
everything else he prescribed for her seems to be working. She doesn’t forget who I am anymore [so far,
knock on wood…], and she remembers her kids.
She still misplaces things from time to time, but I do that too for that
matter. We haven’t had any major episodes
since she misplaced her wallet and I had to replace all the credit cards [we
found the wallet, BTW]. The times of
sheer panic have gone. I told the
neurologist about Lisa’s observations of her visit in June and our visit in
November and the differences between the two.
He seemed pleased enough that we don’t need to see him until after we
get back from Colorado. We were on a
three-month revisit cycle, so now we’re down to twice a year.
For whatever reason, there has been a turnover of doctors
at our local medical center. For the
first fifteen years we were here, we each saw the same doctor. But when his last kid graduated high school,
he pulled chalks and moved to Pensacola.
We got another doctor who was from Kazakhstan. I liked him.
But his wife couldn’t deal with the warm climate here, so he had to move
on elsewhere. The internal medicine doctor we saw that got things in motion for
us is no longer at our local clinic, much to our sadness. We really liked her, but other opportunities
lured her away. Last week we had to see
a new family practice doctor to do the whole “transfer of care” thing. She seems like a nice doctor, and time will
tell whether she is a good doctor. This
week we hit a snafu. The “new” [or
should say “latest”?] doctor wanted lab work done to aid her evaluation of
Carol, her new patient. So far, so
good. We knew the drill – show up to the
front desk, tell them we’re supposed to get lab work done, and tell them that
Carol is fasting. Things didn’t go as we
had planned on Tuesday [Dec. 31st].
We showed up at the lab bright and early [neither of us
are ‘morning people’]. The lab tech said "there's no lab order for your
wife in the system". He hands the paperwork back to me to take to family
practice. I told them what the lab tech told me and they said "this should
fix it". I got back to the lab, and the lab tech said that the doctor
Carol saw yesterday (new doctor to the clinic - old doctor left for "new
opportunities") didn't put the order for lab work under her own name, but
under the name of the last doctor, whose last day was Christmas Eve. I walked
back to family practice, told them what the lab tech told me, and added "I
don't have time to keep doing this. We'll be back Thursday!" I dropped
Carol off at home, went to work, then I called the clinic, asked for a patient
advocate. They don't have one, but the operator put me through to the family
practice supervisor. When all I got was a voicemail, I let her know that she's
going to be on the receiving end of a very loud and very angry complaint.
About an hour after I left the phone message, I got the
call back. I thought maybe I’d scared
her off with my voicemail, but she braved the Wrath of Tony. When I explained to her our predicament
[Carol’s dementia], she was sympathetic.
As it turns out her mother also has dementia and is confined to a
wheelchair, so she knew exactly what my frustrations were. She looked up Carol’s “order” [or lack
thereof] and pinpointed the problem immediately. I told her “this may come off as crude and
rude, but fix your shit!” Her response
was “we’ll be ready for you Thursday morning”.
Today is Thursday, we showed up, and true to her word, they were ready
for us. The lesson – if you don’t speak
up for yourself, nobody else will. Be
fearless when confronting bureaucrats.
To be continued…
