Monthly Archives: April 2013

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.

#Physician, “Heal Thyself”: Pt. ll

Posted in April by

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

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

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

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

Dr S, The Ophthalmologist

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

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

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

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

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

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

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

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

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

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

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

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

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

Sometimes all you can do is #laugh

Posted in April by

“Can you come here for a minute?”

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

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

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

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

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

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

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

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

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

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

“I hate these fuckers!”

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

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

“Put you boobs away.”

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

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

….more laughter.

Miss Cathy has left the building: Pt l

Posted in April by

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

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

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

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

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

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

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

“On top.”

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

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

“Are these them?”

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

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

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

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

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

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

“You have Alzheimer’s.”

# Physician, “Heal Thyself”: Pt. l

Posted in April by

I have always had a great respect for doctors.

Growing up I spent (more than) my fair share of time in hospitals, as well as an adult (for various reasons and relations). I do not have a fear of doctors or hospitals. If anything I feel quite at home among the chaos, quiet, and antiseptic smells mixing with life, death and uncertainty.

So, with my comfort in and respect for the medical profession, I find it interesting that after all of these years I’m still not so sure how the professionals feel about me.

While it seems that doctors (mostly….well, ‘almostly’) tolerate an inquisitive patient, someone who is actually participating in their own health care by asking questions, challenging their doctor to explore options for treatment, etc, it’s different when you are the caregiver for the patient.

Doctors’ reaction to and engagement with me since I started taking care of Miss Cathy have run the gamut from A to Rx.

My routine has been that when I accompany her to see one of her doctors I always take her meds and my composition book to take notes. I sit in the room with her and try not to interrupt or interject unless I’m asked a question directly or need to clarify something that’s she’s said in error.

Lately, l’ve started taping her meetings with my iPhone a) to refresh my memory and 2) to have proof of what went down during the appointment if/when I’m challenged on something that was or wasn’t said while with a doctor.

In the last ten days Miss Cathy and I have been to see her ophthalmologist and her neurologist. She’s had an MRI, MRA and is scheduled for a Diabetic Retinopathy to help explain her recent loss of vision and (ongoing) confusion.

So far there seems to be more questions than answers…but not to worry, I’m taking notes.

The other #”F” word: Pt lll

Posted in April by

Back in 2010 when it was discovered that Miss Cathy had first stage Dementia with an Alzheimer’s diagnosis, I asked Dr Alemayehu, her neurologist what to expect.

He said something to the effect that “each patient is different and their mental faculties diminish differently at varying rates, some deteriorate rapidly while others can remain relatedly stable for years ”. What I remember most clearly was that he sounded about as matter of fact and dry as if he were talking about actuarial tables.

He couldn’t and wouldn’t give me a timetable for progression of the disease (and rightly so). The control freak and planner in me would just have to sit tight.

As my mother used to say, “You can’t set your clock by crazy”.

It was going to be a game of ‘hurry up and wait” (for what who knew and how much care she’d need was a question mark). There’s not much one can do to prepare except avail oneself of books, support groups, websites, et al so that’s what I’ve been doing.

Then, that day not long ago, the clock chimed ‘Koo-coo” and the alarm bells in my head went off, time to put all that ‘book learnin’ and research’ to use.

The slide downward had begun again and it was obvious that the doctor was right; her disease was just on holiday….much like I was.

It’s not like I thought there was a “sell-by” date on Miss Cathy’s sanity but I couldn’t help but be surprised when the time came and things started to change.

I found that I’d started to live day to day much like the characters in the movie “Groundhog Day”, on a calendar that doesn’t change and if/when it does its only toward a future grounded in the past.

I’ve also realized that caregiving is a marathon and not a sprint.

Unlike a disease where you can have a nice hospital stay where friends and family can come visit to feel better about themselves (in-patient treatment for Alzheimer’s is few and far in between-and are usually the result of a fall or some other by-product of the disease) or get an operation for a cure (there isn’t one) or take a pill to put your illness in remission (it doesn’t exist).

So, it’s not about the ‘quick fix’ because there isn’t one, buying a helium “get well soon” balloon is well intended but not what’s needed to tend to your loved one’s well being.

It’s about living close (or in close proximity) and day to day care, teaching the same things over and over, aiding and guiding your loved one through simple tasks that they’ve performed thousands of times before but now are as foreign to them as you will one day become.

It’s also about being available 24/7 for comforting and empathizing, explaining the same questions and correcting the same mistakes again and again, day after day, after day.

So, Miss Cathy and I are joined, hand in hand, walking through the valley of the shadow of decline.

For her, the loved one, the one with Alzheimer’s, her “F” word may be “Forgetting” and, for me, the caregiver, the one that has chosen this journey my “F” word may be “Frustrating”.

But, at the end of a long day, when your loved one is tucked away, and there is peace and quiet in the home, one might just think of the other “F” word……“Faith”…….faith in the knowledge that tomorrow is a new day, and with your loved one, a new chance wipe the slate clean and to start again.

Postscript: Since this posting Miss Cathy has undergone an MRI (which was non conclusive) and is scheduled or an MRA and a Diabetic Retinopathy while her ‘team’ continues to find an answer for her sudden loss of vision.

The other #”F” word: Part ll

Posted in April by

It’s common knowledge that “forgetfulness” is part and parcel of an Alzheimer’s diagnosis.

I’m finding that the collateral damage; anxiety, fear and depression (to name a few) that accompanies the “when”, “what” and “how much” Miss Cathy forgets to be very debilitating as the disease progresses.

The “When” took me quite by surprise because we hadn’t had an incident (or much of one) for quite a while then (seemingly) overnight things were different.

I was in a place where I started to second-guess (again) her diagnosis and wonder “why am I here?” because she seemed to be doing so well…..and for such a long period of time.

The “What” that was confusing her wasn’t just that she suddenly couldn’t remember things; she told me that she was having trouble ‘seeing’ as well.

To hear her explain it, the letters and numbers on the remote, telephone and alarm system weren’t just indecipherable; they seemed to be “moving” too.

Logic and reason did little to help her ‘see’ past what appeared to be true to her eyes.

I tried to reassure her that I was not being dismissive of what she saw. What troubled me was that she so readily accepted her new reality.

I was trying to get her to realize that regardless of what she was ‘seeing’ she should have been able to deduce that buttons do not ‘move’ and numbers do not ‘float’.

“Nope”, she said, “I understand what you’re saying, it just seems to me that my brain just doesn’t work that way.”

So, she would stare at imaginary moving numbers and push at buttons that weren’t where they were supposes to be.

“How much” she forgets and the price she pays for the loss varies from day to day; laboring over changing channels on the television or contacting someone on the phone (and being unsuccessful more often than not) she is absolutely spent, angry and/or highly agitated.

After one or more of these episodes I’ve watched as she toddles off to her bedroom to lie down, as quiet as a child in a ‘time out’, life punishing her for something she doesn’t understand that she didn’t do and is not her fault.

The other #”F” word: Part l

Posted in April by

“Well!”, Miss Cathy said.

I could hear her voice as she walked closer to where I was working in my room from where she had been in the ‘Living’.

“I fucked up the TV again!”

And sure enough, upon closer inspection I could see that the TV screen was blue where there should have been the antiseptic smile of Bob Eubanks, Dick Clark or some other (g)host from the GameShow Network that she watched at that time of day.

She had somehow hit a combination of buttons on the remote that switched the TV to “Video” mode and had no idea how to get it back.

I’d been home just a day or two from a short trip to NYC when Miss Cathy first “forgot” how to use the remote. Then the next morning she had trouble disabling the security system and problems with the telephone; each day seemed to bring more memory lapse and confusion.

Part of me couldn’t help but note that she presented with these new challenges after I’d been gone for a while and before I was scheduled to go away again……..was…is there a connection?

Part of what keeps a person with Alzheimer’s stable (though there is no guarantee) is to feel safe in their surroundings, continuity and routine.

Had I triggered this step back to her future by going away?