I’m late (we’re late) for a very important date: Pt. ll

After checking Miss Cathy’s progress (she was so engrossed in her closet you’d think she was looking for a hat to meet the Queen of Hearts but all she usually wears is army fatigues and an oversized tee under a poly blend jacket topped with a red ball cap no matter where she’s going or who she’s to meet) I decided to “warm up the car” as we used to say in the old days when cars required such attention but nowadays it’s my euphemism for needing to get out of the house.

When it got to be ten minutes before we needed to be someplace that was less than five minutes away (but would require at least that much time for mom to get into and out of the car) I knew it was time to call the doctor’s office to let them know that we’d be late.

After an interminable period of “press one for this and nine for that” the receptionist finally came on the line and after pleasantries and me explaining the reason for the call she told me we’d have to reschedule because “the doctor is ‘on call’ today and would have to leave” if we weren’t there on time.

I told the young woman on the other end of the line (Why are receptionist usually young women? And why didn’t young men ever apply for these jobs? Is it suddenly the Madmen 60’s where clerical office work in doctor’s offices was concerned?)

Anyway, my reassurances that we’d only be ten minutes or less ‘late’ did nothing to assuage her position. She was a ‘verbal gatekeeper’ and I was being denied access, I would have liked to throw her down a rabbit hole.

“Well”, I said, “I’m calling as a courtesy really, which is more than I can say for the hour we had to wait the last time we were in to see the doctor and no one ever came out to tell us how long he’d be or apologize for his tardiness.”

“One, two, three…” I breathed, calculating how I could turn this conversation around, trying not to sound ‘too’ annoyed, lest I give away my fantasy of someone I’d never met free-falling down into endless darkness before hitting an unknown bottom which is where I felt this conversation was heading.

“Can I speak to the doctor?”

“The doctor is in with a patient now, can I take a message for him and he’ll get back to you later this afternoon?” she said. (Oh no she did-int’!)

How could he be both with a patient and getting ready to leave because we’re not there-at the same time?

I was used to putting up with Miss Cathy’s inconsistencies but I had no need to indulge this girl’s word play.

Rather than question the receptionist who was (after all) just doing her job (and apparently not being paid enough to keep track of her own contradictions).

I simply said, “Well then, be that as it may, we’re in the car and will be there in two minutes…see you soon” and hung up smiling a broad Cheshire cat grin, not having to worry about the power to disappear because unlike the cat and Alice (because of the power of technology and not magic) she could hear but could she see me.


Another day, another Doctor: Pt. Vl

“That other doctor didn’t know what he was talking about”, Miss Cathy said, after Dr G decided to reject the suggestion of adding a statin to her daily medications.

“He was just generalizing, he didn’t know me.”

“Well, yes he did”, I piped in, not so much in support of the vascular surgeon she just saw so much as defending doctors in general.

I sat there feeling as if I was under attack for (“heaven for fend”) not only suggesting but also encouraging her to go the doctors and specialists we’d seen in the past several weeks and months-regardless of the outcome of their findings.

Believe me, I understood her frustration after schlepping to more than six doctors in a two week period with no hard diagnosis but what she couldn’t (or wouldn’t) appreciate was the fact that answers are not always guaranteed when you have questions for a doctor.

Sometimes they just ‘don’t know’ and the best they can advise is to monitor the situation or seek a second (or third) opinion.

“In Dr M’s defense”, I continued, ”He was just making a recommendation. He did say that the final determination would be up to Dr G so I wouldn’t just dismiss him. He was looking out for your best interest.”

“Yeah, well….”, she said dismissively, “I can understand that too but I don’t want to take anymore of that medication.”

“All dem pills!” began her familiar retort, followed by, “I don’t see why I have to take’m.”

And so the broken record continued…..

“I’m gonna die anyway, like everybody.” “Nobody is going to live forever.”

Apparently the good doctor and I were to be subjected to all her greatest hits.

Before my ears started to bleed I said, “Then stop taking all of them, don’t come to the doctor and you’ll be dead that much quicker.”

“Will that make you happy?” I asked, not quite rhetorically but not expecting an answer either.

“No, not all of it” she said thoughtfully, “I’ll take some of it, but not everything.”

“Well, actually, that’s the problem, you see, we’re here so the doctor can make the ‘call’ on the medications, it shouldn’t be up to you to decide what you take and don’t take.”

“What’s the point of having doctors if you’re not going to listen to them?”

My question evaporating into the sterile, antiseptic air in the examination room as Dr G closed his notepad, having already said that he wasn’t going to make any change in mom’s meds (or get in the middle of our “George and Martha” act) then got up to leave while Miss Cathy looked around, not for an answer but for her purse and cane before wobbling off to the phlebotomist.

And so ended the appointment, just “another day, another doctor”.

TyTip: Carry your own version of a “Cathy Clutch” (a tote bag filled with all of your loved one’s doctor’s files, paperwork, a notebook and pen for taking notes and film from any/all exams or tests, plus their identification, medical and insurance cards) to all of your doctor’s appointments, you’ll never know when you’ll need something!

TyTip too: Type up and print out a list of your loved one’s medications (be sure to include the dosage(s), what the medication are used for and what condition they are to treat) as well as medicines they might be allergic too

Your “Medications List” can be attached to medical forms and can also be handed directly to doctors and nurses who may inquire about your loved’ ones medications as well.

Having this document will save you a ton of time! Don’t forget to update your list whenever there is a change (addition or removal) of a medication or change in dosage

Another day, another Doctor: Pt. V

“Yeah”, Miss Cathy said, agreeing with me as if I’d been serious when I’d said, “From your lips to God’s ear”, this in response to her saying that “I could die before her”.

”Nobody’s time is guaranteed in this life you know.”

She continued as if we were really having a conversation about mortality instead of verbally sparring with each other.

The fact that I’d just ‘wished’ an early death on myself to get away from her completely going over her head.

“You don’t have to be a certain age to die.” She said, quite please with herself, looking to the doctor for a visual ‘high five’ as if she’d just ‘nailed it’ with her observation.

Dr G was sitting between the two of us, poor man (Switzerland between France and Germany) awkwardly trying to find some neutral place to gaze upon.

“Oh my God!”, was all I could think. “Shoot me, shoot me now!”

“Mother” I interrupted her before she could continue gloating about the possibility of my early demise.

“I was being facetious.”

“You know what” Dr G said, having found a safe spot near the door to focus on, “I’m not getting in the middle of this one.”

Miss Cathy shrugged and changed the subject.

“How is my cholesterol count?” She queried, showing no signs that she’d forgotten the other subject at hand, which was whether or not to add a statin to her daily medications (which total 12 pills at last count…..8 in the morning and 4 at night).

“All medications have side effects you know.”

Dr G opened up what is turning into a volume of notes worthy of a JK Rowling’s novel and after a careful review said, “Last time we checked it wasn’t that bad at 218, which isn’t too bad, but the LDL was 107 which is spectacularly good…so on second thought I’m going to say ‘No’ to the Lipitor.”

“Her protected cholesterol is really so good that I don’t want to do it.” He said to me.

“Yes”, Miss Cathy said, as if she was being vindicated that she was right all along (when actually she wasn’t right so much as just argumentative and stubborn).

Another day, another Doctor: Pt. lll

One of the benefits of having Dr G as Miss Cathy’s Geriatrician is that it’s like ‘one stop shopping’ when we go to see him.

Whenever there is a problem or question (and mom has many) we see Dr G first, and if he doesn’t have the answers he’ll know the appropriate specialist who does.

Case in point, we were back after about a month (it felt like longer) of schlepping around from one new doctor to the next, to discuss their various findings.

The good news was that (other than not remembering what day it is) mom is basically ‘fine’ (a very subjective word these days but considering the alternatives, we’ll go with ‘fine’).

Dr K, her new neurologists, added Namenda to her daily medications, Namenda is a dementia drug that is thought to work well in conjunction with Aricept (which she’s been taking since her diagnosis in 2010) to help sustain memory and issues of confusion.

One of the other specialists she saw was Dr M, a vascular surgeon. I took Miss Cathy to see him regarding the five ‘episodes’ of fainting that’s she’d had over the course of the last three years to get to the root (hopefully) of why they were happening; was it a stroke? Were they seizures? Up till now nobody could say for certain.

He determined that the problem was not the blood flow to her corrated artery (so the ‘why’ and ‘how’ of the episodes is still unresolved but luckily there haven’t been any recently).

After his examination the doctor did recommended Lipitor or it’s generic equivalent to help reduce the possibility of a stroke given her age and all she’s been through.

As we sat with Dr G in one of the (very small, very cramped) examination rooms, he went over all the notes from the other doctors, the things put in place and their recommendations moving forward.

There was a little debate (more between Dr G and himself than with either of us) as to whether or not to put mom on the cholesterol-lowering drug.

Dr G said that while Lipitor is a valid recommendation his concern was Miss Cathy’s various other health conditions; diabetes, Alzheimer’s, high blood pressure and anxiety. So he wanted to be careful that any new drug introduced into her system wouldn’t have either a negative effect or counteract the effectiveness of a current medication.

It seemed at first that he was considering adding the ‘statin’ to mom’s meds and said as much.

Miss Cathy’s response was, “I don’t want to take that. I’m taking too many pills as it is.”

I sat in a corner of the room on what looked like a banquette built for a child or as an afterthought next to a small sink and supply cabinet. There was barely enough room to contain my ever expanding ass and irritation as I eavesdropped on their tête-à-tête.

Dr G smiled and said, “Of course that’s what you say about every one of these pills that we give you to take, so lets just consider this for a minute.”

‘Points’ for Dr G! It may not sound like much but that was one of the rare time that he didn’t just acquiesce to her protestations…..we might just be getting somewhere today.

The Meds discussed in this Blog Post were:

Aricept: is used to treat confusion (dementia) related to Alzheimer’s disease. It does not cure Alzheimer’s disease, but it may improve memory, awareness, and the ability to function. This medication is an enzyme blocker that works by restoring the balance of natural substances (neurotransmitters) in the brain.

Namenda: is used to treat moderate to severe confusion (dementia) related to Alzheimer’s disease. It does not cure Alzheimer’s disease, but it may improve memory, awareness, and the ability to perform daily functions. This medication works by blocking the action of a certain natural substance in the brain (glutamate) that is believed to be linked to symptoms of Alzheimer’s disease.

Lipitor: is used along with a proper diet to help lower “bad” cholesterol and fats (such as LDL, triglycerides) and raise “good” cholesterol (HDL) in the blood. It belongs to a group of drugs known as “statins.” It works by reducing the amount of cholesterol made by the liver. Lowering “bad” cholesterol and triglycerides and raising “good” cholesterol decreases the risk of heart disease and helps prevent strokes and heart attacks.

Another day, another Doctor: Pt. ll

It was evident long before we got to Dr G’s by the way Miss Cathy was acting that it was going to be an ‘off’ day (and I didn’t need to check the cutlery drawer, either).

The ride to his office wasn’t so bad, no rumpling through her purse or rambling about the weather (and thanks to a slight increase in her Lexapro) she’s not as jumpy during the car ride-but that’s probably due more to the fact hat she’s being chauffeured around while she sits in the back seat like her fictional movie contemporary ‘Miss Daisy”.

Anyway, I noticed when we arrived that she was slower than usual getting out of the car, which is hard to imagine since she’s usually moving about as a fast as a turtle and just as interesting to watch.

So, instead of hanging back to see her wrestle with unbuckling the seatbelt I walked ahead, went into the doctor’s office, dropped my ‘Cathy Clutch’ on a chair, signed in for her, then went back to the door to see where she was (or if she was a heap of little old lady bits piled on the pavement).

When I cracked the door open I spied her about fifty feet away from the steps to the entrance at a turn in the sidewalk. For whatever reason she chose to (try) to walk around a garage can (placed near the edge of the sidewalk) by going ‘nearer’ the outside edge of the sidewalk where the concrete was cracked and the slabs were starting to separate exposing some of the sand foundation instead of walking toward the center where it was smooth and unobstructed…that’s “my” Miss Cathy, give her a choice and chances are this is what you’ll get-the road less travelled (because it’s usually under construction).

From the look on her face I could tell she was determined to navigate the crack (as well as the turn) in the sidewalk, the last time I saw her concentrating this hard she was at the ‘Live Casino’ pulling on a slot machine.

She always has her cane with her whenever we’re out in public (never uses it at home) because she’s afraid she’s going to fall.

She was picking at the sidewalk with it as if it (the sidewalk) was moving or there was a snake that she was trying to spike.

At the same time she was engaged in a sort of time lapsed back and forth with her feet, slowly lifting one then the other, tentatively reaching out with her foot before putting it down and starting over with the other in her attempt to move forward, brow furrowed, like a runner trying to navigate a hurdle that’s suddenly been raised on the track.

You might be wondering ‘Why didn’t I just go help her?” or for that matter, why didn’t I help her get out of the car?

Well, the simple truth is that she exercises (her body and her mind) so little that I feel I’d be doing her a disservice by stepping in to help (especially if she’s in a position to help herself).

And I do so much for her already that I have to be careful to draw a line somewhere before total dependence.

Besides, I always check to make sure she’s physically not in danger.

I’m like a parent hiding somewhere that their child can’t see but are able to watch as the young one (‘old one’ in my case) walk out into the world alone (or so they think), I’m there (just out of site) watching to see that she gets to where she’s going (safely) and I’m always there to lend a hand if she needs one.

And more often than not Miss Cathy, left to her own devices, has that steely determination, just like that athlete during a track and field event, to jump her hurdle(s) or in her case, ‘step over a crack in the sidewalk’ and finally cross the finish line, which that day happened to be four steps up to the physician’s door.

Another day, another Doctor: Pt. l

Today was a day not unlike a lot of other days around here; get up, strategically try to time my entrance into the kitchen so that I can make my morning coffee (in peace and quiet before the deluge of chatter dominate my day), meet Miss Cathy in the living room to take her daily blood stik (since she has type 2 diabetes) turn on the TV for her (only if it’s a bad day and she’s forgotten how to operate the remote), then back into the kitchen to start breakfast.

But looking at the calendar on the wall across from the stove I could see that it was also a ‘Doctor Day’ so preparations (in addition to her daily routine) had to be made to get Miss Cathy out of the door and to her respective physician on time.

I would have to make sure that she was bathed, dressed and be prepared to answer whatever questions she’d have (usually the same ones she’d already asked but obviously forgotten) depending on who we were seeing and why we were going.

After weeks and months of specialist after specialist we were off to see her “Geriatrician” (think ‘Pediatrician’ for old people) who just ‘happens’ to be her primary care physician, Dr G.

It makes sense; she’s been going to Dr G for more than thirty years so if anybody knows her inside and out (literally and figuratively) it would be him.

I asked Dr G to take on the additional role so there’d be one doctor (and someone she’s comfortable with and can trust) that is sort of the ‘ring master’ of the circus of care.

In addition to being a ‘Doctor Day’ it was(unfortunately) a ‘running late’ day, too. For some reason mom was still in her room watching TV when we should have been getting into the car.

It still amazes me that for someone who asks what day and time her appointments are over and over, when the day arrives it’s a 50/50 chance whether or not she’ll be ready on time, running late, forget all together or sitting on the sofa, purse and cane in hand ready to go hours before we have to leave….guess with all those variables I should use different odds, oh well…back to getting Miss Cathy outta her room.

TyTip: When possible, tell your loved one about appointments outside of the home a day or two (at most) in advance. The less lead time they have, the less time they will have to fret, worry and/or obsess over the upcoming event or appointment AND the less time they will have to ask you question after question (usually the same ones over and over) regarding said event or appointment.

Remember, changes in their routine (no matter how benign we may think) can be very stressful-even scary to a loved one with Alzheimer’s.

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.Ve

Miss Cathy sat in the chair in the examination room and (for once) just listened (instead of interjecting herself into the conversation) as Dr GG and I squared off.

To be fair, we were talking about her just not to her, an unenviable position I’m sure but it’s more efficient for me to speak on her behalf (as it would be for any caregiver) than for the doctor to play twenty questions with the patient and have to try to interpret every answer for truthfulness and accuracy.

It wasn’t that the doctor and I were at odds, or having a disagreement really, we’d been in synch pretty much from the minute he walked in the room, it was only when I tried (and I knew better but couldn’t help myself) to get him to talk ‘smack’ about another doctor that I hit the ‘White wall’.

So, it was just a matter of me not having the energy to read between lines any more than mom could read the large capital letters projected on the wall that caused a kerfuffle.

I shouldn’t have tried to pit one doctor against another, but (after being exposed to a doctor that knew what he was doing) I didn’t need Dr GG to corroborate my suspicions.

I knew that it was time to bid adieu to Dr A and his fawning ways.

It was one thing to keep my opinions about Dr A to myself (or try to anyway) when her condition was more or less stable and quite another when she needed more than just someone holding her hand and calling her ‘mom’.

By the time we left his office alittle while later Dr GG had concluded that there was a possibility that mom’s confusion and loss of eyesight might be related to her Alzheimer’s but he couldn’t be sure.

He also suggested that we seek a second opinion from a Dementia Specialist (a ‘specialty’ that I did not know existed until he explained it all to me and it makes sense given the rise in diagnosis each year) and he said that he would consult with a colleague to get me some names of someone we could see.

It’s funny, all this time I thought I was doing the right thing by taking mom to a ‘neurologist’ but now I was wondering if I’d dropped the ball wasting my time on the ‘GP’ of the brain when there was someone out there skilled in her disease specifically….I felt like a yutz.

They say ‘hindsight is 20/20’ which Miss Cathy no longer had so I guess it’s better to look forward than back.

Before I could fall too far down the rabbit hole of ineffectiveness Dr GG (true to his word) emailed me a few days after our visit with the contact information of a prominent doctor that specialized in Dementia who headed a top University clinic not far from us in the Nation’s Capital.

Dr GG wrote that there were only a few Dementia Specialist in the country so I should be aware that the demand to see this doctor was high and that he rarely took on new patients.

Sounded like a challenge and if it was, I was up for it.

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.