Tag Archives: Diary

Physician, Heal Thyself: Pt.Vd #WhiteWall

Posted in June by

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.

Physician, Heal Thyself: Pt.Vc

Posted in June by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Physician, Heal Thyself: Pt. Vb

Posted in June by

Miss Cathy was quieter than usual as we settled ourselves in Dr GG’s waiting room after I checked us in with the receptionist.

We sat in a pair of soft leather seats angled for intimate conversation and privacy accented with a small side table topped by fresh flowers in a bud vase.

Ours was one of many such groupings in the large well-appointed room. Under our feet the carpet looked to be a high-end Berber and the walls were papered in a tasteful stripe.

And instead of the ghastly fluorescents glaring down from a drop ceiling that can make any one look ill (even those that are not sick) the lighting here was a healthy soft glow emanating from sconces, floor and table lamps.

I was impressed to see original art on the walls (not the faded, dated prints one usually finds in a doctors office that looked like they’d been holding up the walls since the 1980’s).

There was also a large plasma TV and computer workstations for patients to view and peruse while they waited.

The conspicuous display of taste and wealth went a long way to make me feel comfortable and was a welcome change from the other offices where I felt like we were waiting in a bus depot in Hoboken, New Jersey (no offense Hoboken).

Dr D, the Retina Specialist told me that there were only a few Neuro-ophthalmologists in the country so I assumed that might account for the feeling of exclusivity in being in Dr GG office.

Because of a cancelation I was lucky enough to get the appointment for Miss Cathy as quickly as I did.

I’m not sure if mom noticed the change in surroundings or even cared, she just seemed pleased that I’d remembered to bring some water and snacks for her to eat while we waited. It was obvious that all the running here, there and getting nowhere was finally wearing her down.

But, as an assistant came out to walk her back for some ‘pre-tests’ (my presence was not needed just yet) I could hear her asking the young man question after question so she still had some life (and a lot of babble) left in her.

I was getting pretty worn out too but came prepared (as always) with my “Cathy Clutch” (a tote bag filled with all of her files, paperwork, notebook and the film from all her exams) so I was ready for whatever was to come, “Once more unto the breach, dear friends, once more”.

Physician, Heal Thyself: Pt.Va Dr GG, #NeuroOphthalmologist

Posted in June by

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

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

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

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

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

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

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

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

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

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

VISION PROBLEMS ASSOCIATED WITH ALZHEIMER’S DISEASE

Come back Miss Cathy: Pt. V #CarefreeToCaregiver

Posted in June by

I found myself back on the road, headed home.

I’d been parked the entire time I was having this internal debate just a few blocks from the restaurant downtown that was suppose to kick start my evening.

I was too embarrassed to walk the short distance to cancel in person so I called from the safety of my car.

As soon as I’d hung up I wondered if I’d have changed my mind and stayed if I’d gone inside the restaurant. Would I have sat down, ordered a drink, engaged my date in conversation and been able to be the person that I once was and longed to be again (at least for one night)?

The answer to that I will never know but my actions told me that it was time to stop looking back, longing for the life that I had and focus on how to create more balance in the life that I have now. Sometimes the greater challenge is accepting what is instead of expending energy trying to recreate what was.

I also made a promise to myself not to be angry with Miss Cathy.

Going back home was my decision and there was no reason to pout or act as if she’d done something wrong, she hadn’t, she was just being who she is, which is unpredictable and I was just going to have to accept that fact, too.

Once I was back at the condo I walked in, checked on her (as predicted she was back in bed wide awake and still agitated) so I sat with her for a moment so she could talk about what had happened.

In no time at all I could see that she was settling down and more relaxed because she was no longer alone.

I changed clothes (goodbye ‘carefree’ and hello ‘caregiver’) and in no time I was back into my nightly routine of washing dishes, straightening up the kitchen and setting the alarm, signaling that all was well and everyone (everyone meaning me) was in for the night as if just an hour before I hadn’t been out in the night.

As I often do, I walked through the apartment ‘fluffing and tucking’ stopping at the sliding glass doors that lead out onto the balcony.

I leaned my head against the cool glass and looked out over the complex, past the apartments across the parking lot, up to the sky, and it was then that I realized, agitated or not, confused or focused, in the past or present, manipulating me or being manipulated by her mind, Miss Cathy may be searching but she was always here….it was I who had to come back.

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 ll #PlannedSpontaneity

Posted in May by

While mom was settling into therapy with a couple sessions under her belt my thoughts turned inward.

I was thinking that with her ‘team’ in place (doctors for the body, brain and mind) I could start to put together a life for myself outside of Miss Cathy and caregiving.

So, a couple of weeks ago I ‘planned’ to be ‘spontaneous’ for a change and go into the city to see a new friend and hang out.

When the day arrived I was ready by late afternoon so I went into Miss Cathy’s room to tell her that I was leaving. It’s not the norm for me to ‘report’ my comings and goings but I usually like to give her an idea of what I’m doing if I’m out of the condo for more than four hours…especially at night.

I told her that I’d probably be late getting back or may even stay overnight in the city so she shouldn’t wait up for me (as she is want to do as if I’m a teenager but…hey, ‘whatareugonnado’).

Knowing that she would be anxious as soon as it grew dark outside I suggested that she arm the security system after I left and I would turn it off when I came back.

I set out for my evening feeling very grown up and almost like the unattached and carefree bachelor that I used to be, responsible for nothing more than my own path and pleasure.

Somewhere in the midst of my car ride away from the burdensome-burbs to urban-unencumbered, with the music cranked up while I sang along to my favorite pop tunes my phone rings and I decide not to answer (not because it’s against the law in the state where I live) but because I don’t recognize the number.

Arriving at my destination, relaxed and ready for my night on the town (which at my age was probably going to be nothing more than dinner and a show, but still…it was a far cry from spending the evening listening to Miss Cathy’s TV through the walls as I tried to watch my own, write or read a book).

I take a moment before I get out of the car to satisfy my curiosity and listen to the voicemail. Turns out the call was from Phillips Lifeline telling me that Miss Cathy had pressed her medic-alert button.

The Lifeline operator said that she called in a panic because she’d messed up settings on the alarm and was afraid it was going to start screeching at any moment if she touched it again.

The operator finished by informing me that she would move on to the next person on the contacts list since I did not answer the call (was it my imagination or did I hear disapproval in her voice because I’d not picked up, or was I just calling into question my choice as first on the list in case of emergency).

“That’s gotta be a land record”, I thought to myself. I’d barely begun to taste freedom when it seems my parole was being revoked.

Looks like it was time for ‘little Sheba’ to come back.

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’.