Tag Archives: Diary

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.

#Relish

Posted in May by

Noun: means great enjoyment, delight, pleasure, glee, satisfaction; humorous delectation.

“I appreciate everything you’re doing for me but I’m tired of going to all these doctors.” Miss Cathy said as we walked off the elevator in route to her latest appointment to see her new therapist.

Walking behind her (less like a Sherpa and more Bodyguard-meaning ‘guard of her body’ if she happens to fall) I thought to myself that I find it interesting that she forgets the day of the week, how to operate the can opener and whether or not she’s taken her meds but she never seems to forget how to complain.

But, for all her complaining before the thereapy sessions she seems and says that she feels better after.

It wasn’t exactly a fragile day (“fragile” are those days when she’s especially tired, confused and she looks as if the entire world is against her) but I could see that all the appointments of late to the various doctors were taking a toll on her.

My problem with her complaints (which are numerous and often) is that she just seems to be negative for the sake of being contrary.

No, it’s more than that, I get that she feels powerless; she can’t live alone, make decisions, drive, cook or even plan her own day for the most part, so I understand that the only thing she (may) feel she has control over is the ability to say “No”.

But, I also see (more often than not) that she’s not doing anything positive or constructive with her day (like exercising, going to adult daycare or anything else except lazing in bed watching TV and napping all day) that would prevent her from whatever it is that I’ve scheduled.

She may talk a good game about how she ‘loves to go places, talk to people, laughter, blah, blah’…but given the opportunity to engage with others (outside of talking on the telephone in her condo) and she will usually find an excuse to stay home and not participate.

Her therapy appointment is a good example.

She has an opportunity to talk her head off (to a captive audience no less) and after two sessions she was grousing that she didn’t want to go anymore.

“Well,” I replied, closing the door after we’d entered the office, relishing the opportunity to parrot back to her something that she’d said (and I loathed) my entire childhood, “Sometimes you have to do things that you don’t want to do.”

You’ll understand that someday when you’re a parent and You have a child she always said.

“Yeah, well I know that.” Her voice trailed off as she plopped into a chair, unaware of the irony in the reversal of roles.

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

Therapy Pt. ll: #CyberPaperTiger

Posted in April by

Our family meeting was on a Saturday so first thing the following Monday morning I was up early researching therapists to make Miss Cathy some appointments. The first call I made was to Dr G, her family doctor, he’s the doctor that’s known her longest and she respects the most.

Just like in business, it’s always smart to network with those that you respect and healthcare is no exception.

These days the instinct is to type ‘Therapist’ into Google but I think it’s best to have a referral (if possible) from a doctor who knows your loved one so that there is (hopefully) a personal connection when they are giving you a therapist’s contact information.

Unfortunately I did not feel ‘connected’ to the therapist Dr G recommended.

The therapists’ office was located nearby which is convenient but unlike in real estate it’s not just about “location, location, location”.

I’d called to set up a consultation with the therapist’s office and almost immediately I was turned off by the receptionist’s Priorities. She seemed to be much more focused with how the practice was going to be paid than with information about a potential new client.

Believe me, I know that the medical field is a business and everybody is out to “get paid” but can’t we at least have a modicum of pretense that it’s about the patient and not “the paper”?

The person that I spoke with also referred me to the practices’ website where “I” was to download, print out and fill out several forms to bring to the first meeting (information regarding payment-first and foremost).

While asking for a dossier (even before one sees a doctor) is quite common these days I just didn’t get a great feeling from the elitism of it all.

What if I didn’t own a computer, printer or have an Internet connection? Isn’t it awfully presumptive of a person’s status on the part of the doctor’s office?

And it’s not like we’re talking about making a ‘Ped’s’ appointment for a child here, this is an appointment for someone that’s almost an octogenarian.

Suppose Miss Cathy was the one calling to set up the consultation, can you imagine her trying to navigate the homepage, ‘clicking’ on links, going from ‘new patients’ to ‘forms’ to…well, you get the picture, besides, I don’t think mom has turned on a computer since she retired from the Veterans’ Administration back in Nineteen hundred and ninety three…enough said.

It just seems to me to be alittle insensitive for someone who supposedly specializes in geriatric counseling to put a 21st century burden on people born in the early part of the 20th century, is he a “Therapist’ or a ‘Cyber Paper Tiger’?

#Therapy Pt. l: Old Dog, New Day, New Way

Posted in April by

One of the revelations that came out of the ‘alz-ervention’ a few weeks ago when the family sat down to talk to Miss Cathy was that she expressed an interest in therapy (I immediately went to the window to see if pigs were flying but it was just the blooms off the Cherry Blossoms).

To say I was surprised, shocked and elated (is true) but mostly I was happy that she was
ready to face some of her demons, many of which have nothing to do with Alzheimer’s but the Alz has definitely ‘heightened’ some of the parts of her personality that are….how shall I put this? …..strong (read: annoying as sh*t) but seem to me to be (deeply) rooted in some pain or past that hopefully she is ready to face.

I’m a big advocate of therapy, it’s helped me immeasurably at different times in my life but I also know that sitting across from a stranger, though a professional they may be, is not for everyone and especially someone Miss Cathy’s age (and generation).

And I know that the ‘Greatest Generation’ is not ‘great’ about ‘sharing their feelings’…especially when it involves the kind of navel gazing that my self absorbed generation (the last of the baby boomers-thus aptly named the ‘Me Generation”) is/was all to eager to explore.

We (me) grew up reading “Jonathan Livingston’s Seagull”, ”How to be Your own Best Friend” and “I’m OK, You’re OK”, while our parents still remember reading the WWll mantra “Loose lips, Sink ships” (and internalized that to inhibit introspection apparently).

But, it was because of their stoicism growing up during the depression and thriving after the war(s) that we were able to run around with feathers and flowers in our hair (be it an afro or parted in the middle and worn as long and straight as you could iron it), drink Coke (and later snort it) and ‘try to teach the world to sing in perfect harmony’.

So, giving the differences of how we learned to cope I applaud an older person, specifically my Miss Cathy for embracing self-reflection.

Who says you can’t teach an old dog new ways to contemplate.

Physician, #HealThyself: Pt.lll Dr G, General Practioner/Family Doctor

Posted in April by

I called Dr G a few days after Miss Cathy’s world wind of ‘white coat’ hopping (from ophthalmologist to neurologist to numerous test) to hear him say that no one had called him regarding her condition (quelle surprise!).

“This is the first I’m hearing of it, tell me what’s going on.”

So, I did.

Dr G is her primary care physician. He’s someone that she’s been seeing for well over 30 years. She is very comfortable with him and he with her; after all of these years they have a sort of shorthand when they get together.

I remember him from years ago when I used to visited mom from where I lived in New York and he still looks the same; old, wise and kind. Come to think of it…if he was ‘old’ then and now, thirty (plus) years later he’s ‘older’ still, the how old is it?

The mind reels.

Anyway, he’s one of the last of a dying breed of doctors that ‘might’ actually make a house call if you were in such a need.

Since I’ve been Miss Cathy’s caregiver he’s on time for our appointments (or damn near close to it) professional and compassionate. He always returns a telephone call and follows through with whatever he says he will do for you.

That’s pretty much the ‘gold standard” of a successful working relationship (in any profession) in my opinion-but when a doctor is part of the equation it’s even more important to know that you can count on them to do what they say they’ll do.

I’m not talking about a doctor becoming your bff and calling every time something funny happens on RuPaul’s DragRace (although lets face it-something funny is always happening on RuPaul’s DragRace).

But, even though we all know that doctors are busy and they have responsibilities WE as caregivers and patients are just as busy and we have a responsibility to our health (or the health of a loved one) and that needs to be respected and reciprocated.

And Dr G does all that.

A good doctor is like a the best waiter in a four star restaurant, you know they have other tables to serve besides yours but somehow they appear when you need them, listen to what you want, bring it to you and make you feel as if you’re the only table in the joint.

And that’s’ what I’m looking for from Miss Cathy’s’ ‘team’….I want to feel like we’re the only table in the joint.