Tag Archives: Doctors

Physician, Heal Thyself: Pt.Vc

Posted in June by

Miss Cathy was taken for a series of pre-tests alone while I gladly lounged in the reception area that felt more like an upscale hotel lobby.

I rejoined her when she was taken back to another exam room for a more extensive eye exam with (yet) another assistant (assistants, assistants, everywhere but nary a doctor to doc).

We’d been forewarned that our visit would take a few hours. At just about the two hour mark the doctor came in to greet us.

Dr GG was personable and polite, as inviting and elegant as his outer office.

He made Miss Cathy feel at ease, which in itself made the long drive worthwhile.

And more importantly he didn’t seem as perplexed as the other doctors who’d been confronted with her dilemma.

He asked Miss Cathy pointed questions and answered her queries, which were many.

I told him about our meetings with all the various and sundry other doctors, our ‘long days journey to sight’ as it were.

He listened intently as I went through my notes, telling him that ultimately all the doctors seemed confounded and perplexed, each kicking the (eye) ball down the road to the other for diagnosis.

As for the cause of her vision loss and confusion he said, “The good news is that there is a possibility that her condition was related to having Alzheimer’s.” From what I could gather he was saying it seems that sometimes the brain can trick perfectly healthy, undamaged eyes into thinking they can not see.

Then he went on to explain that the bad news was that if this were the case there was no way to reverse the damage that’d been done or prevent further deterioration.

He also theorized that she could have suffered a series of small strokes that had gone undetected.

I mentioned that Dr A, the neurologist said that he ‘ruled out’ the possibility of a stroke, and that he made the statement on two separate occasions.

Dr GG ‘pricked up his ears’ upon hearing this, saying that just because a physician stated that something was ‘ruled out’ didn’t mean that there wasn’t a ‘possibility’ of its occurrence.

“Uh?”, was all I could think to myself.

He had me at “good news” until he switched gears and decided to give me a lesson in semantics.

Physician, Heal Thyself: Pt. Vb

Posted in June by

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.Va Dr GG, #NeuroOphthalmologist

Posted in June by

Dr GG, Neuro-Ophthalmologist, was a recommendation from Dr D, the Retina Specialist who was a recommendation from Dr S, the ophthalmologist where this daisy chain of doctors all started.

Each experience began differently but ended up pretty much the same; lots of tests (which came back normal and/or inconclusive) and with no definitive answer as to what was causing Miss Cathy’s loss of vision and confusion….hell, I would have settled for speculation but we usually got the verbal equivalent of a head scratch.

After a week or so of back and forth with the neurologist, Dr A (and no answers), I found myself back to square one with Dr S, asking him who he suggested that we see next. He told me to make an appointment for mom with Dr D, a Retina Specialist, thinking there might be a problem with the blood flow to the retina but (true to our track record thus far) Dr D could only report that her retina was healthy and the blood flow was normal (which would be great news under normal circumstances but as we were not living in normal circumstances).

The best thing I can say about the time we spent with Dr D is that he recommended Dr GG.

And his office was close to Miss Cathy’s condo (which was a good thing because we spent five hours, yes I said five hours in his office one day and after it was all over it was all I could do to see straight to drive the mile (or less) home where we both collapsed sitting around waiting after so many tests and disappointments when it all added up to nothing as usual…and not knowing was getting to be pretty exhausting.

I thought I was pretty well versed on all that Alz had to offer (at least during Stage One) but now but it seemed the disease had us chewing over something not on the menu.

It’d been about a month of ferrying mom from doctor to doctor to doctor and my expectations were getting pretty bipolar; swinging from manic high with optimism that the next physician would have answers (and better yet a magic pill to solve everything) to depressed low when it turned out the doctor had just as many questions as I did and the cycle would start all over again with the next doctor.

Miss Cathy alternated between a state of quiet panic at the thought of what to do if she were going blind to raging against the doctors whom she felt had let her down. I couldn’t imagine what she must have been feeling, all of a sudden not being able to see and she couldn’t trust her mind with the information it was giving her eyes with what was visible, it was truly a strange circumstance compounded by the doctor’s inability to help.

So, after many doctor’s appointments and disappointments and it was with low expectations and trepidation that we arrived at Dr GG’s well-appointed office in an upscale part of town very near the urban center.

Update 6/8/13:Dr Brian Ragsdale PhD,a long time reader of the blog, sent the following after reading the post:

VISION PROBLEMS ASSOCIATED WITH ALZHEIMER’S DISEASE

#AromaTherapy

Posted in May by

I feel as if I have failed Miss Cathy.

This thought comes to me as she and I sit next to one another in her therapist’s office. In these closed quarters there is the distinct odor of… how shall I put this…body odor.

But, is it body or booty? I can’t be sure which but what I do know is that it ain’t me and there ain’t nobody else waiting to get their head shrunk so it’s gotta be Miss Cathy.

With all that she’s going through it’s definitely not her fault. It stands to reason that if she’s trying to put her tops on as bottoms that she might not be as attentive to her bottom bottom during her ‘toilette’.

If anything I was remiss in not considering the possibility that even very personal routines might be affected by her recent confusion.

I guess I’m still a work in ‘caregiving’ progress because I (thought) I was ‘allowing’ for her independence and personal space by not policing her personal hygiene but I should have smelled this coming once things started to go south mentally.

I really shouldn’t beat myself up (it’s not like that’s gonna freshen up the air around us) the thing to do now is to focus on making sure that this never happens again.

So, after we leave here I will need to have a conversation with her about hygiene in the car on the ride home.

Since I’ve been her caregiver there is little I haven’t done already (including bathing, clothing and feeding her) during those times when things were really bad but those times are few and far in between and there seen to be different levels of boundaries and intimacy depending on how sick or well your loved one is at any given time.

Hygiene is a difficult subject to broach with someone, no matter how close you are or how boundary-‘less’ you seem, there comes a time when the conversation turns to cleaning.

We decided to add ‘moist-towelettes’ to her routine and to always have a small bottle of mouthwash and spray perfume in her purse so she can freshen up.

It seems to me that this is yet another ‘marker’ on the great ‘slide’ downward.

Just when you think its ‘one’ thing, another ‘thing’ pops up to remind you that your loved one is slipping away.

Things may be difficult and we’re juggling a host of issues from cognitive, visual and emotional, but she’s still Miss Cathy, a woman of great dignity and it’s my job to make sure that dignity stays intact, even when she’s not aware of it’s absence.

Be that as it may, if she is slipping from now on she’ll fall into therapy smelling baby fresh with just a hint of her favorite ‘Oscar De La Renta’ perfume.

Update: This post was written on April 14th during a challenging time that has since improved, yet another example of the ‘up and down’ nature of this disease.

I’m happy to report that (for now) Miss Cathy’s does not need as much supervision or so close a scrutiny as to have to pass the ‘smell test’.

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

Posted in May by

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

Posted in May by

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

Posted in May by

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?

Oye!

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

Posted in May by

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

Posted in May by

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.

Therapy Pt. lV: Alz R Us #EndAlz

Posted in May by

Since Dr G’s referral for a therapist for Miss Cathy didn’t work out my next call was to Maureen Charlton, the Helpline Program Coordinator of the Fairfax, Virginia Alzheimer’s Association® National Capital Area Chapter.

The Alzheimer’s Association is a wonderful organization and I highly recommend them to anyone who has been touched by the disease. They have a wealth of resources and information.

The first thing I was grateful for was that they helped me to realize that I was not alone.

Their mission statement reads; “The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research”.

But (like everything in life) I have found it best not to depend on them completely and to think of them as just ‘one’ of your resources and not the ‘only’ one.

After talking to Maureen and explaining what I needed she emailed a list of doctors and therapists.

Unfortunately, as I learned a couple of years ago when I requested a list of ‘Elder Lawyers’ (no, not ‘old lawyers’, rather ‘lawyers’ that specialized in legal issues for the ‘old) I’ve learned that Alz.org’s information and referrals are not always up to date or current.

I found more than ½ dozen of the physicians on the list that she gave me for referrals was outdated.

Was I mad (no), did I get frustrated (yes) but considering the help that they’d already given me and the fact they were mostly a volunteer organization where everybody was doing their best I couldn’t ‘not’ cut them some slack.

Besides, they were kind enough to feature my journey with Miss Cathy as part of there “World Alzheimer’s Day Story Project” in 2011.

So, I took it upon my self to compile my own list of names that needed to be deleted from their list and emailed it to Maureen.

But, that still left me with more than enough professionals to contact so I got work.

As I worked my way down the list of doctors and therapist that were available to me I had to consider the very real possibility that this could all be a huge waste of time. I mean lets face it, I was looking for a therapist to help someone with problems that she might not remember having let alone remembering the solutions once she got up off the couch.

But, if Miss Cathy thought therapy might help then it seemed to me to be worth the effort to find her a good doctor, no matter the outcome.

Later that day I received an email from Maureen. She couldn’t have been more apologetic and wrote ”We do make every effort to keep our lists as accurate as possible, but as you can imagine, we cover a large territory and things change”.

She said that she was very appreciative of the info, but for me not to feel obligated, she knew that I had a lot on my plate already.

I wrote back that I knew they were doing their best and I was happy that I could help.

I just wanted to make sure that they updated their system so that another caregiver (or heaven forbid) a person with Alzheimer didn’t spend the day as I had trying to contact doctors that were either no longer in practice, had moved or in one other case needed to be removed for an entirely different reason.

http://www.alz.org/index.asp