Water off a duck's Back: Pt. ll

In addition to battling over exercise (or her lack thereof) I’ve fought with Miss Cathy through the years about a number of issues.

There was her wandering away from the kitchen while she had a skillet on the stove (usually turned up to the highest heat possible), murdering toasters (to date I’ve bought six toasters in three years after she’s managed to break them), her denial about her Alzheimer’s, her penchant for ‘doctoring’ herself (meaning she might decide to increase, decrease the dosage of her meds (or stop all together) based on what she thought was appropriate) and there is her propensity to forget if she’s taken her meds so she would either skip a cycle and not take them or double down and take the same meds twice in one day.

As soon as I realized what she was doing (three years ago she could be trusted to be responsible to take her medication as prescribed) but as time went on and her condition progressed (ever so slightly) and it was obvious that I had to intercede.

I took complete control over her meds after that, standing over her twice a day now like Nurse Ratched in “One Flew over the Cuckoo’s Nest” making sure she swallows all of the pills and isn’t losing them or squirrelling them away somewhere.

Other things haven’t been as important (or as potentially life threatening) but you learn to choose your battles; whether it’s food, hygiene or seeing physicians.

Lately it seems that after every session she’s had with her therapist (and there have been less than a dozen in the past three months) she’s balked at going back.

Just last week we had come back from a morning doctor’s appointment and I could see that she was already eyeing her bed with a look that said she was ready to dive in for the rest of the day (and it wasn’t even 11:00 am yet).

So I quickly reminded her that she had a one o’clock meeting with her therapist, knowing that if she got under the covers nothing short of the promise of taking her to the casino and spotting her a couple hundred bucks would be able to blast her out of bed.

“I’m not going back there, I’m tired!” she hissed as she walked into her bathroom.

“Tired?”

Tired from what is a discussion for another day but this was not that day.

And you know what, I was tired, tired of trying to convince her week in and week out that what she was doing for her emotional heath was just as important as her physical well-being.

I was tired of her schizophrenic reaction about going to therapy; most days she was elated to have gone, waxing poetic about how she’d “learned so much” and “how knowledgeable and nice” the therapist is/was.

Then flash forward to the day before (or day of) a new session and she’s railing about “what a waste of time it all is/was” and asking “how much longer did she have to go”

Jeez….who was she, Sally Field in “Sybil”?

Water off a Duck's Back: Pt l

At what point should a caregiver ‘give up caring’?

When should you abandon a course of action that (you know) will benefit your loved one but they simply don’t want to do? When should your hopes and dreams for their wellness take a back seat to their fear and inflexibility?

These questions (and more) seem to swim around in my brain more often these days.

When I moved here to take care of Miss Cathy one of our first battles concerned the amount of exercise she was (not) doing. I’d already waved the white flag of defeat over her doing any sort of strengthening or toning exercise and decided to focus on walking.

I tried cajoling her, offering to walk with her (which believe me was no easy offer to make considering that she wobbles along at a pace that a turtle could easily overtake).

And I told her that I would help her by maintaining some sort of schedule but after one or two short (I’m talking less than an eighth of a mile short) walks, she simply wouldn’t go outside with any regularity, no matter what sort of ‘schedule’ she’d committed to.

Whenever I reminded her or prodded her to ‘take her walk’ she would let out any number of reasons why she ‘couldn’t’ (not that she wouldn’t, it’s just that there was some impediment in her way); it was (either) too cold, too hot, too late, too rainy or she was just too tired (from what I have no idea when her day consisted of moving between sitting on the living room sofa and laying in bed).

She got more mileage out of here excuses than her walking shoes would ever accrue.

I quickly found out that if I pushed her too far she had no trouble exercising her tongue and telling me to ‘back off and where I could get off’.

Miss Cathy could and would curse me out (not often but with enough regularity to warrant my being very aware of how far to push).

And the language…..Wowsa!..... Miss Cathy can swear like a sailor during a perfect storm without a wit of regret or worry that her ‘sweet little old lady’ card would be taken away if the ‘Old people potty mouth police’ could hear the vulgarities coming out of her mouth.

“Like water off a duck’s back”, I’d mumble to myself, a phrase I learned much to late from Jinxx Monsoon, the recent winner of RuPaul’s Drag Race. She’d use the phrase like a healing chant (and invisible shield) whenever some insult was hurled her way by one of the vicious queens competing against her. 

(In)dependence Day

The snap, crackle and popularity of fireworks going off a night early here in the suburbs on the 3^rd (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

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

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

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.