Tag Archives: Life

(In)Dependence Day

Posted in July by

The snap, crackle and popularity of fireworks going off a night early here in the suburbs on the 3rd (and very little activity on the actual holiday which is strange) put me off my game and cereal when I awoke on Independence Day.

So, it would seem only fitting that I should walk into the living room and find that mom had already worked herself up about the “state of dependence” she (thinks) she’s found herself in (once again).

We’ve come to that place (once again) where Miss Cathy is in a state of denial, or should I say she’s remembering that she’s in denial about having Alzheimer’s since the last time when she must have forgotten that she’d reconciled herself to accepting her condition.

I spent the better part of my morning explaining to her (once again) what her diagnosis means and what the definition of dementia is.

What fun….all this while my head throbbed from all those damn fireworks blasting into my dreams the night before.

(Question: why does all the drama seem to greet me in the a.m.?…Possible answer: maybe it’s because Miss Cathy sleeps (on average) fourteen (or more) hours a day so she’s razor sharp in the post dawn and ready to rumble, as long as it’s before lunch when she’s about to tumble back into bed for the day)

So I stood behind a wingback chair (why I didn’t just sit down I don’t know, maybe I thought by standing the conversation would feel as if it wasn’t going to drag on for hours, or maybe I needed some barrier between me and her denial).

No matter, here’s a sample from her “Greatest Hits of Denial”:

1) She still doesn’t think she has Alzheimer’s:

Her new neurologist mentioned “no one with dementia could have passed the test he performed in his office”
(I tried to explain that she’s just one of those people that gave ‘good test’ but it’s her day to day life that she’s trying to put her tee-shirt on as pants and the doctors aren’t testing her for that, and it’s not like she offers up relevant information like that when they doctors ask her “what brought you in today?” her response is to talk about here knee usually, so its up to me to fill them in on herstory)

2) She can’t accept that because she has Alzheimer’s that she’s a danger to herself and others:

She’s bemoaning the fact that she can’t drive anymore which she immediately equates to her ‘loss of freedom”
(I reminded her, in no uncertain terms, that if she can’t see clearly or have the cognitive skills to put the silverware back in the drawer correctly then how the hell does she think she should ever be in the driver’s seat of a car…ever again)

3) She can’t accept that since she’s a danger to herself that she cannot live alone:

She says she feels like a prisoner
(I told her that it seems to me that she’s in a prison of her own design; that there are plenty of people in the world, her age and older that take the bus, hail a cab, or call a friend to get them anywhere they want to go. Besides, she has me as a personal chauffeur to drive here around. So, if she wants to sit on her ass in her condo that’s her choice and her’s alone)

And on and on it went, listening to her tilt at imaginary obstacles to happiness Miss Cathy reminded me of Don Quixote, but instead of chasing after windmills she’s searching for a prognosis that she’s been misdiagnosed and she can get back to the life she led before.

So, long before night would fall and the rest of America would rise to set off fireworks in celebration of the nation’s birthday I could already see the bombs bursting in air (in my mind’s eye actually) as I settled in for a conversation about (in)dependence.

Happy fucking Fourth of July to me!

Physician, Heal Thyself: Pt.Vla The Great and Powerful Dr of Alz

Posted in July by

Did I ‘happen’ to mention that somewhere in the middle of the running from Dr A to Z that Miss Cathy started to regain some of her eyesight?

Yes, well, one day she called me into her bedroom and proudly told me what time it was from looking at the clock across the room from where she lay in bed.

That might not sound like much but considering that just days before she couldn’t recite the correct sequence of numbers on the clock (let alone see them), we took it as nothing short of a miracle (me more so than her because what she didn’t know was that Dr GG had just pulled me aside during our first visit to his office and told me to brace myself for the possibility that her condition could be permanent-or worsen).

Mom took my hand and looked up at me, her face flush with pride, eyes innocent as a young girl when she confessed that she had been quietly praying to God everyday for help and she was convinced that He had done what no doctor was able to do.

“Sounds good to me!” I said.

I’m not particularly religious, I consider myself a spiritual person, but I’m also a pragmatist so I was just thankful to whoever turned the lights back on in her brain.

I was happy to give God the credit, none of the doctor’s had been able to do anything so far.

But our celebration was short-lived when she started to regress then rebound back from confused and unable to see well to almost normal again.

So, it seemed that we’d just had a reprieve before we entered a new “confused today, clear tomorrow” phase of her disease.

I explained all of that and more to the program manager of the Georgetown University Medical Center as I tried to convince her that Miss Cathy had been through enough.

We’d (“I”) already been talking for quite some time but (to her credit and my surprise) she stayed on the phone with me, patiently listening as if she didn’t have anything else to do (which I knew couldn’t possibly be the case but I was grateful none the less).

She told me that as it is they were completely booked and Dr T had a full schedule so it would have to be a ‘special’ case for them to consider making room for a new client.

“I know that everybody thinks their loved one is special but we simply can’t take everyone that wants to get into the Clinic.”

“Hmm”, I thought, “did I think Miss Cathy was special?”, the word ‘special’ lighting up in my brain like one of those huge, neon signs in a Baz Lurhmann film.

Physician, Heal Thyself: Pt.Vl The Great and Powerful Dr of Alz

Posted in July by

I quickly realized when I contacted the referral Dr GG; the Neuro-ophthalmologist gave me for Miss Cathy that this was not going to be a quick skip down the yellow brick road to a diagnosis.

First, I would have to deal with the “Program Manager” of the Clinic before I could gain access to the much sought after Dr Turner, Director of the Georgetown University Memory Disorders Program.

The Georgetown University Memory Disorders Program is dedicated to providing state-of-the-art clinical services for individuals affected by Alzheimer’s disease and related disorders and was conducting research aimed at improving treatment options for Alzheimer’s disease and that the Memory Disorders Program works in close collaboration with the ‘Alzheimer’s disease Cooperative Study’ to explore new clinical trials and receive updates about the current research.

I felt like Dorothy after she’d travelled so far and been through so much realizing that there was one more obstacle between her and whom she needed to see to get what she wanted when she arrived at the gates of the Emerald City.

Like L. Frank Baum’s most famous character, I had to get past the gatekeeper (or in my case, the program manager) in order to be granted and audience with the Wizard, I mean the ‘Doctor’.

Dorothy wanted to go home, I just wanted something holistic.

To my surprise and to her credit, the project manager returned my call just a few hours after I left a voicemail for Dr T (none of the ‘catch me, catch me’ games I’d played with other doctors recently).

She introduced herself and told me that she was the person who coordinated the schedule and screened potential patients for Dr T and the clinic. She then asked me to tell her about Miss Cathy.

She seemed sympathetic to my plight and listened intently as I told my tale, not saying much, occasionally interrupting me for clarification of a fact or two, which I took as a good sign that she may be interested.

After I finished she was very upfront and said that as distressing as the situation was to us, based on what I’d told her about mom’s condition, (the loss of vision and the increased confusion) Miss Cathy sounded as if she was presenting ‘typical’ symptoms consistent with her disease so she might not be a candidate for their clinic.
And even though the program manager’s assessment of our situation sounded like a rejection she didn’t say “no”, not just yet, so (in my mind) there was still a chance.

The more she talked, the more I wanted to get Miss Cathy an appointment with Dr T and into that clinic.

All I had to do was keep talking, and try to convince her to let us in.

As determined as Dorothy was to get what she wanted, I was just as determined and I knew there wouldn’t be any of those scary flying monkeys to deal with (I hoped).

So, (with one eye peeled skyward-just in case) I began my quest to get an audience with the great and powerful Doctor of Alz.

Guess who’s coming to Breakfast: Pt lV

Posted in June by

Once inside the foyer, Aunt Dorothy made a big show of taking off her shoes (which was kinda sweet actually) even though Miss Cathy and I both tried to insist that she didn’t have to participate in the custom that we adopted from my sister-in-law’s Japanese traditions.

“No”, she insisted, demonstrating flexibility worthy of someone decades younger than her eighty-four years, smiling all the while as she bent down to unlace her shoes.

“I know what to do”.

It seemed to me that Dorothy wanted mom to know that she’d been listening during all their conversations since Miss Cathy became ill.

And that she remembered all the stories she’d heard about all the redecorating I’d done to the condo and the wall to wall carpet Miss Cathy was so proud of and how determined she was to keep it looking as new as possible for as long as possible (believe me, if she could have wrapped it all in plastic as was the trend in so many lower middle class households in the 60’s I’m sure she would have).

They walked arm in arm into the living room, comfortable to be in each other’s company again.

For the briefest moment I could see the girls they once were together, while Aunt Dorothy pointed out the various changes that had been made since she’d last been ‘up north’ as if she were the guide and Miss Cathy the visitor.

With everyone settled around the two matriarchs, mom in her usual spot at one end of the sofa nearest the windows and Dorothy across from her, to her left in a wingback chair, my cousin, Dennis in the wingback next to his mother and Darlene, his wife next to mine, I went off to gather drinks and start the meal.

I decided on a red, green and yellow pepper omelet stuffed with cheese, bacon on the side and toast, nothing fancy, just colorful.

I forgot to garnish the plate with one or two strawberries (always thinking that a ‘pretty’ presentation goes a long way in balancing ‘so-so’ cooking) because I was too busy trying to get the plates out as soon as I could to feed our guests, still not knowing how much time they had to spend with us before getting back on the road.

Laughter from the living room where Miss Cathy held court drifted into the kitchen and mixed with the sounds of the eggs cooking and bacon sizzling.

She’s never been at a loss for words and after years of hearing most of what she has to say, I smiled to myself as I folded and flipped an omelet, happy knowing that she had a new audience that she could entertain.

Guess who’s coming to Breakfast: Pt. lll

Posted in June by

My cousin phoned early the next day to invite Miss Cathy and I out to breakfast.

Neither of us acknowledged that strange sensation of hearing someone’s voice that you knew as a child but was never introduced to as an adult so we both feigned familiarity.

I thought the ‘plans’ (such as they were) was for them to come visit us at home. I’d stocked the fridge with food for breakfast, lunch or a light supper since I was never told when they would arrive.

I insisted that they come to us from their hotel nearby whenever they were ready.

Over my relative’s many objections when I said that I would cook for them he finally relented and I made sure he had the address.

I thanked him and said that they would be doing me a favor. Because of mom’s condition it would take a lot of effort and energy for her to navigate the crowds, noise and unfamiliar surroundings if we had to venture out to meet them in a restaurant-especially on a Saturday.

It seemed no sooner had I hung up the phone and started to prep in the kitchen that I heard a knock.

I’d expected to greet a gaggle of people that might resemble me in some fashion but there was only one person at the door, Aunt Dorothy.

My mother’s favorite sister in law and possibly my favorite aunt stood there, smiling up at me with open arms welcoming me into her embrace. As I leaned down to hug here I was amazed at how is it that a relative can loom large in our childhood mind’s eye of remembrance which is in stark contrast to the reality of the diminutive elderly relative standing before the adult me.

As I hugged here I saw my cousin’s wife, (whom I’d never met) and cousin walking up behind her explaining that they’d sent Aunt Dorothy inside while they parked the car.

Hearing the frackus of introductions and hugs in the hallway Miss Cathy toddled up to join in the hootin’ and hollerin’.

She’d waited a long time for a family reunion of any kind so it was nice to see her swallowed up in their embrace.

I’m sure to Miss Cathy that even as she invited them into her home it felt a little more like home, surrounded as she was by her kinfolk; their smiles, their touch, and their speech with it’s familiar southern singsong that must have been music to mom’s ears.

Guess who’s coming to Breakfast: Pt. ll

Posted in June by

It’s not easy watching Miss Cathy carry her anger and hurt about her family around like a wounded bird, gently tending to what’s broken yet ever ready to wage war lest it be taken advantage in its weakened state while trying to make peace with the damage done.

And just as sure as the sun follows the moon you could count on a diatribe whenever the tender subject of her families absence from her life comes up.

“I’ve been running up and down the highway for years taking care of them, taking time off from work, leaving my kids when they needed me”, she’d say, working herself up then her voice would calm down and her anger would turn wistful, “if I knew that this is the way that they would treat me….”

When her anger was spent she’d confess that she wouldn’t have done anything differently; she would still have gone to care for her mother when she was alive, even though there were siblings living right there in the same town (and on the same street).

She’d do it all again for any one of her three sisters or two brothers if they needed her.

Such is the nature of families, a conundrum wrapped in an enigma.

I can’t imagine how she feels.

She just always assumed her family would be there for her in kind.

Looking in on her life as I have the past three years, I can see that they care (evidenced by their phone calls) but no one seems to care enough to make time to visit.

That’s why I always refer to her family as ‘relatives of unknown origin’.

To me they’re not worth identifying or remembering as individuals when (for years now) the lot of them have displayed the same disappointing ‘group think’ and continue to offer up excuses and indifference instead of showing up.

In my book, it’s very simple “if you care-you’re there”…period.

Family is made up of more than blood and the happenstance of kin; family isn’t just order of birth and it isn’t a birthright.

‘Family’ are the people that love, support, and nurture each other. Family are the people that you can turn to, lean on and you always know that you can let down your defenses because they are there to defend you.

So, with the arrival the next day of mom’s sister in law, nephew and his wife it was gratifying to know that someone(s) in her family was finally making an effort.

Regardless of how long it’d taken or for whatever reasons they stayed away so long, the simple act of showing up is a powerful first step toward making themselves worthy of relatives being known.

Guess Who’s coming to Breakfast: Pt. l

Posted in June by

Not too long ago Miss Cathy received a telephone call from her sister-in-law telling her that she was coming north from the Carolinas for a visit.

This would be the first time any of her immediate family has come to see her since her husband died fifteen years ago and her Alzheimer’s diagnosis almost three years ago.

Mom was so excited to have ‘company’ that she was bathed, powdered, hair coiffed and anxiously waiting on the living room sofa early on a Friday morning dressed in a cream colored top with applique at the sleeves and a pair of slacks in a festive red color (so much better than her almost daily uniform of an oversized tee shirt over army fatigues).

She was like the first kid up on Christmas eagerly waiting for everyone else so they could all share in the magic of the day together.

Her favorite sister in law (widow of her oldest brother) was being driven North by one of her sons and his wife. They were stopping for a brief visit on their way up the East Coast to New Jersey to see other relatives.

“So”, I thought to myself when I heard the news of the impending visit, Miss Cathy was only the appetizer and the relatives further up the Northeast corridor the main course but, hey, “a visit is still a visit”.

Her family, mostly all of who live ‘Down South’ consists of three sisters, a brother, their spouses and offspring. And for whatever reason they’ve kept in touch pretty much the same way through the years, regardless of what’s happened, via telephone and the occasional holiday or birthday card till now.

Since I’ve lived here I’ve overheard promises from her family to visit and plans being made but for whatever reason the rubber never hit the road and they never come.

The only family she has seen since her diagnosis is her cousin, Mary and Mary’s two grown daughters who live here in the same state as mom.

But, I don’t think the reason they come is because of proximity, the come because they care.

Believe me, I am just as grateful for Mary and her daughter’s visits as Miss Cathy. They come with love and leave love behind.

It’s my firm belief that at the end of the day ‘people do what they want to do’; so wind, nor rain, nor front row tickets to a Lady Gaga concert could keep someone away from whatever it is that they really want to do.

So, the fact that not one of her siblings has come to see her is an on going source of pain, anger, disappointment and bewilderment for Miss Cathy.

But she was obviously ready to let all that go as she sat, barely able to contain herself every time she ‘thought’ she heard someone at the door, waiting for a familiar face from home.

When I walked into the room to help her with her morning meds it almost broke my heart to have to tell her that they weren’t due to arrive till Saturday.

Physician, Heal Thyself: Pt.Ve

Posted in June by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Physician, Heal Thyself: Pt.Vd #WhiteWall

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. 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”.