Physician, Heal Thyself: Pt.Vla The Great and Powerful Dr of Alz

Did I ‘happen’ to mention that somewhere in the middle of the running from Dr A to Z that Miss Cathy started to regain some of her eyesight?

Yes, well, one day she called me into her bedroom and proudly told me what time it was from looking at the clock across the room from where she lay in bed.

That might not sound like much but considering that just days before she couldn’t recite the correct sequence of numbers on the clock (let alone see them), we took it as nothing short of a miracle (me more so than her because what she didn’t know was that Dr GG had just pulled me aside during our first visit to his office and told me to brace myself for the possibility that her condition could be permanent-or worsen).

Mom took my hand and looked up at me, her face flush with pride, eyes innocent as a young girl when she confessed that she had been quietly praying to God everyday for help and she was convinced that He had done what no doctor was able to do.

“Sounds good to me!” I said.

I’m not particularly religious, I consider myself a spiritual person, but I’m also a pragmatist so I was just thankful to whoever turned the lights back on in her brain.

I was happy to give God the credit, none of the doctor’s had been able to do anything so far.

But our celebration was short-lived when she started to regress then rebound back from confused and unable to see well to almost normal again.

So, it seemed that we’d just had a reprieve before we entered a new “confused today, clear tomorrow” phase of her disease.

I explained all of that and more to the program manager of the Georgetown University Medical Center as I tried to convince her that Miss Cathy had been through enough.

We’d (“I”) already been talking for quite some time but (to her credit and my surprise) she stayed on the phone with me, patiently listening as if she didn’t have anything else to do (which I knew couldn’t possibly be the case but I was grateful none the less).

She told me that as it is they were completely booked and Dr T had a full schedule so it would have to be a ‘special’ case for them to consider making room for a new client.

“I know that everybody thinks their loved one is special but we simply can’t take everyone that wants to get into the Clinic.”

“Hmm”, I thought, “did I think Miss Cathy was special?”, the word ‘special’ lighting up in my brain like one of those huge, neon signs in a Baz Lurhmann film.


Physician, Heal Thyself: Pt.Vl The Great and Powerful Dr of Alz

I quickly realized when I contacted the referral Dr GG; the Neuro-ophthalmologist gave me for Miss Cathy that this was not going to be a quick skip down the yellow brick road to a diagnosis.

First, I would have to deal with the “Program Manager” of the Clinic before I could gain access to the much sought after Dr Turner, Director of the Georgetown University Memory Disorders Program.

The Georgetown University Memory Disorders Program is dedicated to providing state-of-the-art clinical services for individuals affected by Alzheimer’s disease and related disorders and was conducting research aimed at improving treatment options for Alzheimer’s disease and that the Memory Disorders Program works in close collaboration with the ‘Alzheimer’s disease Cooperative Study’ to explore new clinical trials and receive updates about the current research.

I felt like Dorothy after she’d travelled so far and been through so much realizing that there was one more obstacle between her and whom she needed to see to get what she wanted when she arrived at the gates of the Emerald City.

Like L. Frank Baum’s most famous character, I had to get past the gatekeeper (or in my case, the program manager) in order to be granted and audience with the Wizard, I mean the ‘Doctor’.

Dorothy wanted to go home, I just wanted something holistic.

To my surprise and to her credit, the project manager returned my call just a few hours after I left a voicemail for Dr T (none of the ‘catch me, catch me’ games I’d played with other doctors recently).

She introduced herself and told me that she was the person who coordinated the schedule and screened potential patients for Dr T and the clinic. She then asked me to tell her about Miss Cathy.

She seemed sympathetic to my plight and listened intently as I told my tale, not saying much, occasionally interrupting me for clarification of a fact or two, which I took as a good sign that she may be interested.

After I finished she was very upfront and said that as distressing as the situation was to us, based on what I’d told her about mom’s condition, (the loss of vision and the increased confusion) Miss Cathy sounded as if she was presenting ‘typical’ symptoms consistent with her disease so she might not be a candidate for their clinic.
And even though the program manager’s assessment of our situation sounded like a rejection she didn’t say “no”, not just yet, so (in my mind) there was still a chance.

The more she talked, the more I wanted to get Miss Cathy an appointment with Dr T and into that clinic.

All I had to do was keep talking, and try to convince her to let us in.

As determined as Dorothy was to get what she wanted, I was just as determined and I knew there wouldn’t be any of those scary flying monkeys to deal with (I hoped).

So, (with one eye peeled skyward-just in case) I began my quest to get an audience with the great and powerful Doctor of Alz.

Physician, Heal Thyself: Pt.Vd #WhiteWall

I thought what Dr GG had just said to me, that ‘ruled out’ didn’t necessarily mean that there wasn’t a ‘possibility’ was some sort of word play and ‘doctor logic’ that was bullshit.

“Forgive doctor”, I said, weary of word games and tired of being made to feel like I wasn’t keeping up.

“I’m only repeating what I’ve been told and to the lay person, this person anyway, ‘ruled out’ means ‘not a chance’ and since I’ve been ‘put in my place’ and told that I am not a doctor it’s not for me to decipher the subtleties of what another doctor says to me. I can only take what l’m being told at face value.”

By way of a response he pulled out the MRI film again that I’d handed him from my “Cathy Clutch”.

Dr GG studied the film for a moment then motioned us closer to the light-box that he’d turned on and attached the large black Mylar film, revealing a reverse black and white graphic of what could only be Miss Cathy’s brain glowing back at us.

The doctor pointed out an area on the black film and told us that it was the “White Matter” located within the ‘Gray Matter’ (confused…so was I but hang in there with me).

He said that it was so thick that a small stroke could be hard to identify so if was possible that it wouldn’t show up on a scan.

I think I understood what the doctor was saying (in his round about way) and I could tell that he being diplomatic (by trying his best not to compromise a fellow physician) but I wanted to be sure of what I was hearing (after all, we’d heard so much and from so many).

Besides, I’d been building a case to persuade Miss Cathy to switch from Dr A to a different neurologist. This just might be the ammunition I needed to pull the trigger with some facts and not just feelings.

So I asked him if he was saying that Dr A had been wrong to say what he did.

Dr GG pulled the film from the light-box as it turned it off, turned to me and said, “I didn’t say that exactly, but I’m not saying that your question isn’t valid, I’m just saying that I deal in discretion.”

Great! Who was this guy…Gollum? Now I have to read between the lines and play word games!

It was obvious he didn’t want to betray some “white wall” of loyalty doctors must have for one another.

“I’m sorry doctor but I don’t have time for discretion, I just need a solution to this problem.” My brain was about to explode. I just wanted some simple, declarative statements (forget about implicating Dr A) and was hoping we’d finally met a doctor that could provide some straight talk.

I told him that I ‘live’ for subtleties, that discretion was my middle name and any other time I would be right there with him, ready to bat words around high above the heads of whomever was in the room about whatever subject was really the topic but I was too tired to decipher coded language and I was doing my best not to get worked up and pissed off.

Physician, Heal Thyself: Pt. Vb

Miss Cathy was quieter than usual as we settled ourselves in Dr GG’s waiting room after I checked us in with the receptionist.

We sat in a pair of soft leather seats angled for intimate conversation and privacy accented with a small side table topped by fresh flowers in a bud vase.

Ours was one of many such groupings in the large well-appointed room. Under our feet the carpet looked to be a high-end Berber and the walls were papered in a tasteful stripe.

And instead of the ghastly fluorescents glaring down from a drop ceiling that can make any one look ill (even those that are not sick) the lighting here was a healthy soft glow emanating from sconces, floor and table lamps.

I was impressed to see original art on the walls (not the faded, dated prints one usually finds in a doctors office that looked like they’d been holding up the walls since the 1980’s).

There was also a large plasma TV and computer workstations for patients to view and peruse while they waited.

The conspicuous display of taste and wealth went a long way to make me feel comfortable and was a welcome change from the other offices where I felt like we were waiting in a bus depot in Hoboken, New Jersey (no offense Hoboken).

Dr D, the Retina Specialist told me that there were only a few Neuro-ophthalmologists in the country so I assumed that might account for the feeling of exclusivity in being in Dr GG office.

Because of a cancelation I was lucky enough to get the appointment for Miss Cathy as quickly as I did.

I’m not sure if mom noticed the change in surroundings or even cared, she just seemed pleased that I’d remembered to bring some water and snacks for her to eat while we waited. It was obvious that all the running here, there and getting nowhere was finally wearing her down.

But, as an assistant came out to walk her back for some ‘pre-tests’ (my presence was not needed just yet) I could hear her asking the young man question after question so she still had some life (and a lot of babble) left in her.

I was getting pretty worn out too but came prepared (as always) with my “Cathy Clutch” (a tote bag filled with all of her files, paperwork, notebook and the film from all her exams) so I was ready for whatever was to come, “Once more unto the breach, dear friends, once more”.

Physician, “Heal Thyself”: Pt. lVe Dr A

I know that I’m not trying to ‘play’ doctor.

I’m just trying to be an informed advocate for my mother. I also know that Dr A has tons of patients…good for him. I’m hoping he’s making buckets of money and buying more Ferragamo shoes.

But, I only have one (patient-not pairs of shoes) so Miss Cathy is my one and only focus.

“She came in saying that she could not see and that is what I am focused on.” Dr A said self-righteously during our telephone conversation.

“Yes, that’s true but when she came in I also told you that she’s confused and yes, I-know-that-having-difficulty-seeing-would-be-stressful-for-anyone but this is more than that, that’s why we came to you for help”, I said.

I could not believe I had to explain myself to this asshole.

The conversation continued (and believe me) it did not get much better. We agreed that she’d come back to his office in three days time and he would examine her again and explain the MRI results.

Interestingly enough I got a call the next morning from Dr A’s assistant telling me that he wanted Miss Cathy to go back to the hospital for an MRA (something he never mentioned during our ‘chat’ on the phone).

I had to wonder if my insistence on his doing something hadn’t prompted the additional brain scan.

Back in his office a few days later Dr A told us that (unfortunately) the MRA was just as inconclusive as the MRI so he said that he would confer with Dr S, the ophthalmologist.

I (unfortunately) had the same misfortune to spend several days leaving voicemail for Dr S (these guys must be reading from the same ‘script’) trying to follow up with him.

When Dr S finally retuned my call he told me that he never heard from Dr A (quelle surprise) but suggested it was time that I take Miss Cathy to (get this) yet another doctor (this one a “Low Vision Specialist”).

So, another appointment was made for a potential addition to Miss Cathy’s ‘team’ of doctors.

As for Dr A, it was becoming very clear what roles we each played in this little ‘doc’udrama.
And if you asked me (…and you didn’t but I’m gonna tell you anyway) Dr A seemed to be missing too many of his cues.

He may be the Doctor and I just the Son of the patient but I’m also Miss Cathy’s ‘Legal Primary Caregiver’ making me the Director of this little production.

And as the director I thought it was time (way past time in fact) to hold auditions and recast some one new into the role of Neurologist.

My Life Coach back in New York said to me many years ago, “If you don’t like the story that you’re telling, you have the power to rewrite it anytime you want”…and in this case that’s just what I intended to do.

Physician, “Heal Thyself”: Pt. lVd Dr A #OhNoHeDiin’t

After two doctors and one round of tests we knew nothing more than when we started. Miss Cathy still couldn’t see much more than large objects like people but could not read and she was getting more confused and anxious with each day that passed.

Dr A, the neurologist was on speakerphone with us and had just told us that the MRI she’d undergone for (possible) answers held none.

He listened to mom’s questions and pacified her as best he could.

Putting aside the vision loss for the moment, I tried to press him for something that could explain her confusion and more specifically what could be done to help her right now.

He said that his focus was on her eyes (which I thought was odd because I remember him referring us back to the ophthalmologist the last time we met for that issue).

Don’t get me wrong, any help was appreciated but she had more than one problem to solve, and since her was her ‘brain doctor’ I thought he should be addressing her cognitive issues, too.

I was beginning to wonder if this guy could walk and chew over a diagnosis at the same time.

“I’m the doctor”, he said emphatically.

“I have to prioritize what my patient needs. Are you a doctor?” he asked.

Oh no he diin’t!

I was taken aback by his sudden change of tone, but not so surprised that I backed down from his rhetorical challenge.

“I know my role”, I said, measuring my words carefully, wanting to tell him that in this moment he wasn’t a doctor so much as a douche bag but he was Miss Cathy’s ‘doctor douchebag’ so I was working overtime to be cognizant of my place.

“…And I know that I’m her son and you are her doctor. I’m just asking questions. I don’t know why you’re getting so defensive.”

I do have to ‘check’ myself from time to time (my approach, my motivation, how I’m being perceived) and after a quick gut check I was confident that I hadn’t over stepped, over-reached and I certainly had not been over-indulged in any way (not by this guy anyway).

Physician, “Heal Thyself”: Pt. lVc Dr A

As I suspected, the call never came from Dr A the night after the MRI.

I didn’t exactly sit by the phone like some school girl back in the 1950’s, waiting to be asked out on a date, but I did feel like an asshole carrying my iPhone everywhere I went that night and checking that my ringer was on every ten minutes to make sure that I wouldn’t miss his call (hmmm…sure reads like a young woman of yesteryear that had unknowingly given up her power to a male and to a communication’s devise invented by another man a century before, reinforcing negative gender stereotypes between the sexes).

But, unlike my unaware mid-century sister, I knew not to wait, and to take control. Why wait when u can take the action and call you?

Whether it’s a date or a doctor you should never think the balance of power only flows one way….his.

The wasted evening didn’t bother me so much (believed me I racked up more than my fair share of those on my own) as much as the fact that in the days after the test I had to chase him down (each time I left a voicemail I was starting to feel more and more like Glenn Close in the film “Fatal Attraction”, ‘I will not be ignored Dan’ (Dr A to be more precise)…now that I resented.

Dr A finally called in the early evening two days later.

After a perfunctory greeting I asked that he hold on the line while I put the phone on speaker so Miss Cathy could hear and talk to him as well.

He protested (which I thought was odd) saying, “Why can’t you just tell her what I’m saying?”

“Well”, I explained in my best teacher voice, honed over many years of explaining the obvious to college art students, “My mom has been anxious to talk to you since yesterday and she-is-the-patient.”

“Besides, I don’t like to convey information third party, it’s better if she hears whatever it is directly from you.”

I had made a promise to myself when this all began that (whenever possible) I would make sure that people talked directly to one another and not rely on me.

I learned early on not to fall into that trap, I didn’t want anyone to come back and say that I got something wrong. So my rule is part making sure nothing gets misconstrued or miscommunicated and part covering my own ass.

I could hear his accented voice protesting on my iPhone as I walked the few feet to Miss Cathy’s bedroom where she was already lying down for the night.

Unfortunately the doctor said that the MRI film didn’t show him anything that identified the cause of the problems she was having. Hearing our disappointment he said that he would gladly show us the film and explain what it all meant the next time we came into his office.

He spent a lot of time telling us what was ‘ruled out’ but nothing about what this was or what we should do.

So what were we suppose to do with this non-information?


The brain guy says her brain looks ‘good’…the eye guy says her eye(s) look ‘good’…yet she still couldn’t see and she was still trying to wear her tee shirt as pants and in my book that’s still ‘bad’!

Physician, #HealThyself: Pt. lVb Dr A

Miss Cathy has seen Dr A at least a dozen times in the last 2 1/2 years.

During her appointments he’d perform a few rudimentary tests to check her short-term memory and cognitive skills after which he’d determine that she was more or less the same…which was good news.

And so it was year after year, it was all pretty routine more or less until the last two visits.

Given that set of facts my complaints against Dr A seemed pretty much ‘surface’ stuff (like his patronizing ways (he always called Miss Cathy ‘Mom’ which I am convinced he doesn’t do out of affection or as a pet name but because he can’t be bothered to learn what her name really is).

I didn’t campaign for his removal from the ‘team’ since it was his manners and not his medicine that were in question.

We went to see him the day after our appointment with Dr S, the ophthalmologist (and we all know how well that didn’t go) hoping he’d have an explanation for her increased confusion (at least) and maybe some insight into her loss of sight.

Upon hearing about the changes in Miss Cathy’s condition Dr A seemed to rise to the occasion and focused his exam on the new information that we were bringing him but ultimately (surprisingly…not surprisingly?) he let us down when he didn’t have much in the way of answers or an explanation as to what was happening to mom.

Miss Cathy was very concerned (understandably) about going blind and made a moving plea for his help.

Truth be told he didn’t seem ‘moved’ one way or the other.

I mean, I know he sees distraught patients everyday but his sensitivity to her rapid decline was minimal at best (holding her hand and calling her ‘mom’ was something I was already doing on my own time at home-and I don’t have a medical degree).

Besides, what we (me) wanted were solutions not sympathy.

As for diagnosing her loss of vision…he simply ‘passed’ on that one, deferring to the ophthalmologist (whom we had just seen and I made a point of reminding him of that fact) and referring us back to where we’d just come from.

In the end he did order an MRI for the next day thinking it would give him more information as to what might be happening to her brain and said that he would call that night to discuss what he concluded after reviewing the film.

So, the next day Miss Cathy took a couple of Valium (even in a partially open MRI she gets claustrophobic and panicky) and took the test.

That evening we waited for a call that never came.

Physician, #HealThyself: Pt. lVa Dr A, Neurologist

Dr A was the neurologist on call at Doctor’s Hospital where Miss Cathy was recovering after an accident in 2010. He was brought in the evaluate her after I noticed that she didn’t seem quite right even though the hospital was about to discharge her because she’d (luckily) not sustained any broken bones after her fall and her vital signs were all normal.

And sure enough, after a series of tests Dr A concluded that she had Dementia, Stage one Alzheimer’s.

I left my life to join hers soon after and became her primary caregiver.

It made sense to add Dr A to her ‘team’ of doctors since she was comfortable with him and he was the doctor that diagnosed her condition.

When I first met the doctor I took note of his professionalism, directness and knowledge of the disease (which at the time I only had a “Lifetime Movie of the Week” awareness of).

Once she was back home we saw Dr A at his private practice near her condo.

I was a fast learner and not just about the disease. One of the things I learned was that a doctor’s beside manner in the hospital is one thing and how he runs his practice to be quite another.

In time I became dissatisfied with Dr A and had to remember that I was the caregiver and not the patient. Miss Cathy by all accounts (and after direct questioning) was pleased with his care.

I had to remind myself of what one of best friends said to me early on, “Regardless of your personal opinions or feelings toward any of the ‘team’ all I have to do is collaborate with the doctors and get them to collaborate with one another”.

My friend stressed the word ’collaborate’ so many times that it’s all I can remember.

In my mind’s eye I couldn’t help but see the duck from the old Groucho Marx TV show drop down from the ceiling on a string with the word ‘collaborate’ written in block letters on a piece of paper hanging from it’s beak.

But, this was not some late night talk show with a panel of ‘B’ list actors from the Golden Age of Television and I was not a quick witted, Jewish comedian with a sight gag. I was dealing with a humorless doctor and a parent/patient that was content.

So, as the months turned into years and as the appointments with Dr A started to accumulate I started to question his methods and wonder if another neurologist could serve my mom better…or was this just about me and my ability to collaborate?

No matter, Miss Cathy was happy with Dr A, and in her eyes he could do no wrong…that was until a loss of vision caused her to see him in a different way.

# Physician, “Heal Thyself”: Pt. l

I have always had a great respect for doctors.

Growing up I spent (more than) my fair share of time in hospitals, as well as an adult (for various reasons and relations). I do not have a fear of doctors or hospitals. If anything I feel quite at home among the chaos, quiet, and antiseptic smells mixing with life, death and uncertainty.

So, with my comfort in and respect for the medical profession, I find it interesting that after all of these years I’m still not so sure how the professionals feel about me.

While it seems that doctors (mostly….well, ‘almostly’) tolerate an inquisitive patient, someone who is actually participating in their own health care by asking questions, challenging their doctor to explore options for treatment, etc, it’s different when you are the caregiver for the patient.

Doctors’ reaction to and engagement with me since I started taking care of Miss Cathy have run the gamut from A to Rx.

My routine has been that when I accompany her to see one of her doctors I always take her meds and my composition book to take notes. I sit in the room with her and try not to interrupt or interject unless I’m asked a question directly or need to clarify something that’s she’s said in error.

Lately, l’ve started taping her meetings with my iPhone a) to refresh my memory and 2) to have proof of what went down during the appointment if/when I’m challenged on something that was or wasn’t said while with a doctor.

In the last ten days Miss Cathy and I have been to see her ophthalmologist and her neurologist. She’s had an MRI, MRA and is scheduled for a Diabetic Retinopathy to help explain her recent loss of vision and (ongoing) confusion.

So far there seems to be more questions than answers…but not to worry, I’m taking notes.