Tag Archives: dementia

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

Come back Miss Cathy: Pt lll #RépondezS’ilVousPlait

Posted in May by

After listening to the voicemail from Phillips Lifeline my first instinct (like any good doggie) was to abandon my evening, turn tail and return home.

But, since I’m a person and not a dog I sat in my car for a few moments to ponder the situation. Before I went anywhere I knew that I needed to call mom (and hope she wasn’t too freaked out and had her shit together well enough to answer the phone) and find out what was going on and get a feel for where she was emotionally.

I had just enough time as I waited for the call to connect (or not) to beat myself up alittle for not picking up the unknown call earlier and for not having the number in my contacts in the first place! (I have since added the name/number to my phone contacts list).

The names of the people on the emergency contact list that Phillips Lifeline had contacted were also running through my head.

I knew that I needed to call them back asap…including Phillips Lifeline…Oye!

To my relief (and surprise) mom did pick up the phone. She said that Ron, our upstairs neighbor and her unofficial third son, had come down to reset the alarm then gone back home.

She was clearly agitated, sounding like ‘fragile Cathy’ and said that she wanted nothing more to do with setting the alarm after I suggested she try again and then go back to bed.

I told her that I would walk her through the steps (something she’s done a thousand times but because of the Alzheimer’s each time is the becoming the first time) and tried to reassure her that she could do it but she was having none of it.

“Do me a favor and breathe with me”, I suggested, her anxiety growing when it should have been dissipating.

“I know you, if you don’t set the alarm you’re just going to lay awake and jump all night every time you think you hear something…you won’t get a wink of sleep.”

“Yeah, well”, she lamented, “then I-just-won’t-sleep-then. I’m not fooling with that damn alarm thing again tonight!”

“Okay then, if that’s you decision…” It was no use arguing with her so I said good-bye and hung up.

A deep breath then it was time to call everyone else that had been invited to this little ‘panic party’ and tell them thanks for the rsvp and that they could all go back to whatever they were doing, all the while parked not two blocks from the restaurant where I should have been répondez s’il vous plait for my own evening.

Lady looks like a dude

Posted in May by

We all know that Dementia is a serious and cruel disease that in time will rob a person of their memories and dignity.

As painful as it is for me to watch Miss Cathy’s confusion and struggles with Alzheimer’s it also pains me to see that she has forgotten about something near and dear to my heart (no, not me or my face)…Fashion.

I know there are worse things to deal with and if you’ve been reading along you know that I’ve shared enough Sturm und Drang and this ain’t that.

What’s maddening is that I don’t know which to blame, the Alz or old age for the fact that these days Miss Cathy looks like a suburban bag lady.

I understand that as one gets older it’s less about fashion and more about comfort but still…a little effort. Besides, the two aren’t mutually exclusive.

It’s not that she was ever a fashion plate (nor that she ever really had a passion for it) but
2 ½ years ago when I first joined her life she would greet each day (whether she had an appointment outside of home or not) with a different outfit and a smile on her face outlined by her favorite shade of red lipstick courtesy of Avon.

Her ‘go to’ wardrobe these days looks like pieces gleamed from a dumpster and not a department store.

Gone are the skirts and lightly embellished knit tops, nowadays she’s usually wearing a printed tee shirt over drab olive fatigues or cargo pants and zip front walking shoes and when we go out she’ll top off her ensemble with that damn Ravens football cap of hers.

I want to hand cuff her to a copy of Vogue and turn her into the Fashion Police.

She has three closets crammed full of clothes (some of which Joan River’s might even give a ‘thumbs up’) and her wardrobe is full of ‘labels’; unfortunately none of them read St Laurent, Chanel or Valentino.

She’s a retired civil servant so a wardrobe of couture is not realistic but a few pieces of St John…J. Jill….is that too much to ask?

Hell, I’d be over the moon if she shopped at Chico’s.

But, ‘it is what it is’ and she ‘has what she has’, the problem is she’s not even wearing any of her ‘off labels’ anymore.

Lately it’s hard to distinguish between her bedclothes and her street clothes (and I’m not talking about the lingerie as daywear look popularized by Madonna back ‘in the day’ either).

Miss Cathy will just as soon sleep in an oversized printed tee and then think nothing of wearing it over a pair of ‘man’pants and toddling out to my car to go to a doctor’s appointment.

I wonder if someday when she forgets who she is I can convince her that she’s Audrey Hepburn, or anyone else for that matter capable of wearing a LBD (Little Black Dress).

Till that day I can only hope…and hide her cargo pants and football cap.

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, #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, “Heal Thyself”: Pt. ll

Posted in April by

As a caregiver I’m responsible for all aspects of my loved one’s care, and as Miss Cathy’s son I feel doubly responsible for her physical and emotional well-being.

To that end I have tried my best to work with doctors’ that she’s had relationships with for years as well as those that are new to both of us since her Alz diagnosis in 2010.

It’s my feeling that at the end of the day she is only as healthy and happy as her ‘team’ of doctors has helped her to be (and that means if it’s a regular check up or when she is in crisis).

My opinion(s) of her ‘team’ (of doctors) shouldn’t matter one way or another (you know what they say about ‘opinions’…) butt, of course I have one (some) and here they are:

Dr S, The Ophthalmologist

After her (seemingly) abrupt loss of vision and increasing confusion, the eye specialist was Miss Cathy’s first request of a physician to ‘see’ and it made sense since ‘suddenly’ she couldn’t.

Miss Cathy has been going to Dr S for years; a birth defect took away the sight in her left eye so she’s been dependent on her right eye her entire life.

We waited almost a week for the appointment because the receptionist said, “that was all they had” and my explanation of her situation didn’t move her to get us in any sooner.

The doctor’s assistant brought us back into a room where she performed some preliminary tests. Dr S came in soon after to take over the exam when it was clear to the assistant that Miss Cathy’s condition was anything but preliminary (and above her pay grade).

He asked her several questions, had her hold a Victorian looking contraption and told him what she could (or could not) see through it, the after some other optical tests he rendered his opinion.

He ruled out a stroke, then he said that he saw no blood behind the eye so he could only conclude that the eye was ‘healthy’ and he seemed just as puzzled as we were that she couldn’t see clearly….literally and figuratively.

When Dr S confessed that her problem might be “outside of his area of expertise” I wasn’t happy that he didn’t have a solution to the problem but I was impressed with his honesty and humility. While I find doctors to be honest I’ve seen more hubris than humility from most.

He suggested that she might need to consult a neuro-opthamalogist to determine if there was a problem between the optic nerve and the brain.

After finishing up my copious note taking I told him that she already had an appointment to see her Neurologist, Dr A next.

He asked who her General Practioner was, recognized the name and said that he would confer with him as well as the Neurologist.

“We’ll take it from there” were his parting words as he offered us his hand but no solution before saying goodbye.

We left his office knowing no more than when we first arrived but after hearing how long it took us to get an appointment Doctor S said that they were upgrading her chart to “priority” (kinda like being bumped unexpectedly to Business Class from Coach).

I walked out feeling as if he was either trying to express some sense of urgency for her condition or that it was just some bullshit gesture for a flight (diagnosis) delayed.

Sometimes all you can do is #laugh

Posted in April by

“Can you come here for a minute?”

I heard the familiar refrain come from the direction of Miss Cathy’s bedroom the other morning as I got out of bed to greet a new day.

“I can’t even put my damn bra on!” She said with disgust.

Well, at least she’s not trying to put her tee shirt on as pants I thought to myself as I wiped the last of sleep from my eyes.

And sure enough, as I walked the few feet into her room my newly wakened eyes saw that her bra was not only on backwards…it was inside out as well.

It’s been about a month now since her step downward; it started with a loss of vision, compounded by confusion over the ability to see and use everyday objects. And now the simplest of tasks (things she’s been doing her entire life) have become complicated.

Watching her struggle with her under garment, as if someone had made an over the shoulder Rubik’s cube instead of a brassiere, looking nothing like the iconic Horst P. Horst photo of a woman caught in the act of snapping her brassiere, so famously paid tribute to in Madonna’s “Vogue” music video, Miss Cathy seemed as emotionally twisted as her bra straps.

She’d managed to put one strap up over her shoulder but the other was lost under a fold of skin in her armpit, somehow the back was in the front, the whole thing was inside out and the closures were pressed down on her breasts with the cups hanging off her back, looking about as useful as tits on a bull.

“How in the world?” I started to say, then I had to laugh and so did she.

“Damn!” she said between chuckles as I gently unhooked the closures, releasing her ample bosom, taking the garment off her to reconceive it for its intended purpose.

“All these damn titties!” She said looking down at herself and talking as if she were divulging a secret her body was not aware of.

“I hate these fuckers!”

“Well” I said giggling, helping her to put her brassiere on correctly.

Nothing like seeing an old lady topless, especially your mom, first thing in the morning to let you know what kinda day you’re in for.

“Put you boobs away.”

“I wish I could cut ‘em off! I hated them even when I was a girl and they first started growing. I know men are suppose to like’m.” She said, arranging herself into her bra.
“I wonder what they’d think if they had them instead of balls and they had to lug’m around all the time.”

I helped her snap shut the last closure in the back the helped her with put on her top tehn said, “I’m sure if they had tits and no balls they’d think they were women.”

….more laughter.

Miss Cathy has left the building: Pt l

Posted in April by

This morning a woman that I could hardly recognize greeted me at my door.

“Can you help me find my pants?” She said as she started to put the yellow tee shirt in her hands on as if they were trousers.

Today was the second morning in a row that Miss Cathy was having this particular problem.

Even after I pointed out the obvious to her she didn’t really seem to comprehend what I was saying.

“What is that in your hands?” I asked, ” No……..don’t try to your leg through it, just tell me what it is.”

“This?” she said holding up the tee as if it were something new that she’d discovered, “It’s a shirt.”

“Right… and we put shirts on to cover up our tops and pants to cover our bottoms. So where does the shirt go?”

“On top.”

“Exactly! Only let me find you a fresh one”, I said getting up and rubbing the sleep out of my eyes. “I think it’s time we gave that one a break for awhile.”

She went to her room and sat on her bed to put on the blue top that I found on a pile of clean clothes near her bed looking perplexed. She said that she still didn’t know where her pants were as she started to pull at one of the other tops (in yet another pile) on her bed.

“Are these them?”

Into the breach once more to discuss breeches (what was and what wasn’t).

I rummaged round in her closet and finally located a pair of lightweight pants appropriate enough for her to wear during the unusually warm weather we’re having (94 degrees in April).

I also made a mental note to block out some time (soon) to clean her out her closet; I couldn’t believe how much of her clothes were scattered on the floor, the clothes were strewn about like something out of the mind of a heroin addict.

I looked back to see what progress she’d made dressing only to see that she was laying back in bed with the sheet pulled up around her shoulders saying she was tired as if she’d just worked a long hard day and it was bedtime.

Clearly, the ‘pant/shirt’ lesson had exhausted her but I had to remind her that it was only 8:30 in the morning and she needed to get up, have some breakfast and take her meds.

Before she’d agree to get out of bed she looked up at me and asked, “What’s wrong with me?”

“You have Alzheimer’s.”

# Physician, “Heal Thyself”: Pt. l

Posted in April by

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.