Tag Archives: mental-health

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. lV

Posted in June by

I called my brother, Tony (second on the Phillips Lifeline emergency contact list) after talking with Miss Cathy.

It was somewhat of a comfort to hear him say that he didn’t pick up the call (for the same reason that he didn’t recognize the number) either.

“Jeez!”, I thought, if this were a DC comic we’d have made shitty superheroes because neither of us was there to answer the “Bat call”…. Oh well, at least my misery has company.

Tony knew that I was prone to beating myself up for things that went wrong so he was especially compassionate (which is not his ‘go to’ emotion being a product of our upbringing and a former career Marine and but he can be counted on to provide a shoulder when needed).

We talked for a bit, letting each other off the hook as only people in a situation like ours can. As the conversation was winding down and I knew that I had to get to the others on the list I decided to ask him for his advice before I let him get back to his life.

Should I continue with my evening or go back to aid and possibly enable Miss Cathy?

Should I call Ron, the upstairs son (and the one who thankfully answered the distress call) and ask him to go down (again) and do battle for me (knowing that’s not his role, his job or his responsibility)?

I was (after all) trying to have a life of my own, outside of her many needs, thinking that I could (hopefully) address some of my own.

But now I couldn’t help but wonder about the validity and timing of the crisis.

While I always take mom’s condition seriously I couldn’t help but wonder out loud if sometimes her confusion and panic were ways to get attention. The number of times that she seemed perfectly fine (fine being a relative term when you’re dealing with Alz) before I left home but after I was gone was another story (usually ending with my premature return).

And (interestingly) after I returned (and she calmed down) she was (back to) as she was before.

Whether this was conscious or not I couldn’t say, nor could my brother but he’d noticed the same thing himself when he had to care for Miss Cathy. There did seem to be times when her reaction to a situation seemed to spiral out of control and stabilize only after she got what she wanted.

Tony agreed that it was a conundrum and said that I could go back and do what was needed or I could stay out for the evening. But, if I did stay out, I’d have to find a way to make peace with my choice and not feel guilty.

I realized after talking about the situation that it didn’t matter if the crisis was manufactured or not, the end result was that she needed help and I needed to respond.

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.

Come back Miss Cathy: Pt. l

Posted in May by

The 1950’s stage play (and later film version) of “Come Back Little Sheba” was a story of a housewife in crisis heartbreakingly portrayed by the late great actress, Shirley Booth.

Her character stands just outside her kitchen door (and her life) late at night where she can be heard calling for her lost dog.

During the course of the drama it becomes evident that she’s longing for the return of more than just (wo)man’s best friend.

This morning it struck me that the same could be said of Miss Cathy.

While she rarely stands anywhere for long these days she does seem to be lost in thought a lot and more often than not looking out the window as much as she’s looking a the television.

Her introspection led me to wonder…do her anxieties and nervousness go deeper than the dementia? Does the fact that the ‘present’ confuses her open her up to see the ‘past’ more clearly? And if it does, what does she see there?
Is she looking for something other than what that she’s lost since her diagnosis…her independence, freedom, sense of self?

She’s just started therapy recently and I am hoping it will help.

After her first consultation I went in to talk with the therapist for a moment, she warned me that sometimes (depending on the trauma or issues uncovered) an elderly mind can be determined to be too fragile to confront whatever has happened (this is especially true of some dementia patients) and if that’s the case then it might be best to let the past stay unexamined.

I know some of Miss Cathy’s past troubles and hardships but it’s not for me to say, nor for me to judge how she’s walked thought her life, her choices and what she chooses to talk about.

Everyone’s life contains pain and it’s up to the individual to bare witness (or not) to his or her own emotional holocaust.

With that in mind I’ve encouraged mom to continue therapy (she was questioning whether or not to go back after only one visit) and to give time time.

My hope is that in time she may feel safe enough (and comfortable enough) to finally talk about what’s been unspoken for so long.

#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’.

#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. 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.