Monthly Archives: July 2013

Calculating Cutlery: Pt. ll

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I first noticed a correlation between Miss Cathy’s mood and the cutlery drawer around the same time that her vision started playing tricks on her way back in the early spring.

It seems her brain, diminishing by dementia, was telling her healthy eyes that they were weak, causing her to not recognize familiar objects like a knife or a fork and she couldn’t see clearly enough to read anything smaller than billboard sized type.

Her cognitive skills were affected too, making it next to impossible for her to learn new ways to compensate for her loss of vision and to adapt to her ever-changing circumstances and she seemed to complicate even the simplest of tasks.

Spring turned into summer and after many fits and starts, including the (sudden and unexplained) return of (some of) her vision, there was some improvement but putting the dishes and the silverware away could still be quite the challenge.

Her difficulties weren’t confined to the kitchen either; while sitting in the living room it wasn’t uncommon for her to turn the TV off by mistake or to switch the remote from cable to video mode (which completely throws her for a loop) and she’s not able to switch it back.

She would come get me most of the time when this happened, other times I might walk past the living room (and ‘not’ hearing) the familiar sounds of a courtroom, game, or talk show I’d just pick up the remote and correct the problem, and (sadly) there were those times when she’s just sit there, staring at a blank TV screen.

It’s heartbreaking to see her in those moments when she seems resigned to her fate, as if the disease is some sort of punishment for a past transgressed.

I’ll look at her, wondering what she’s thinking when she’s sitting in silence and wondering if I should step in and say something to break the spell.

Instead of just doing everything for her (automatically) whenever something goes awry, I’ve learned to take a moment, assess the situation and (if it’s pretty obvious that she’s not lit her hair on fire) I’ll help when I can and encourage her to do for herself whenever possible-if possible.

So, sometimes ‘I ask’, other times ‘I do’ and there are some occasions when I just ‘let her be’.

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Calculating Cutlery: Pt l

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As any good caregiver will tell you, you quickly develop a second sense of your loved one’s state of mind after witnessing Alzheimer’s day in and day out.

You don’t have to be clairvoyant-just observant.

For example, I’ve learned that I can tell what sort of day I’m in for simply by looking into the cutlery drawer.

If, when I awake and go into the kitchen to make my coffee and look and see that the knives and forks are still in their respective slots in the tray (that I’ve returned them to the night before when I put away the dishes) then it’s probably going to be an easy day, a day where Miss Cathy is more or less self sufficient and not much is asked of me.

But, if I see that there is chaos and anarchy in the drawer; spoons and forks co-habitating and butter and steak knives fighting to occupy the same space then that’s a pretty good indicator that it’s going to be a long, long day.

At first I thought she was just ‘in a rush’ or ‘not paying attention’ and when I asked her about the mismatched cutlery she said she was “just being lazy” and would do better.

She was true to her word for a time but then she’d go back to making a mess.

This back and forth, with me playing “fork police” and Miss Cathy the “perp” went on for quite awhile. To the average person this may seem like ‘no big deal’ but caregivers get what I’m going on about.

It’s not the ‘mess’ (and no, I’m not comparing myself to Joan Crawford, as she was presented to the world by her victim-I mean ‘daughter’, Christina Crawford in the early 80’s biography and later cult classic “Mommie Dearest”, who happened to clean compulsively (usually three sheets to the wind) and clarify to her daughter after she’d dragged her out of bed in the middle of the night to help her clean that she wasn’t mad at ‘her’ (Christina) but that she was mad at the ‘dirt’).

No, this wasn’t about the mess, it was about trying to get a loved one with Alzheimer’s to try to ‘remember’ what they’d committed to doing and following through on a daily basis.

So, I try to use every little action or activity as a potential ‘teaching moment’ to help Miss Cathy learn to strengthen her memory muscle and challenge herself not to become mentally complacent.

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Happy Birthday: Pt. ll

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I decided on a ‘Sweet tooth’ theme for mom’s birthday.

I ordered rum balls from “Sweet Mama’s”, a tasty Tulsa, Oklahoma bakery that shipped in time for the big day. I placed them on a hand-blown glass cloche that was part of her ‘sweet tooth’ themed gift, it’s not only pretty, it’s perfect for the occasional apple pies and “sock it to me” pudding cakes that Miss Cathy likes (and I try to buy in moderation because of her diabetes).

I put a bow on the glass ball top of the cloche, walked Miss Cathy into the kitchen with her eyes closed and when she opened them-voila, a sweet birthday surprise!

A lady should never tell her age but I’m no lady so I’ll just put it out there that mom is seventy-five years old.

Seventy-five isn’t that old really, not these days, especially if you factor in that ‘sixty’ is the new ‘fifty’ (at least according to pop culture), people are working long past seventy (by choice or economic necessity) and doing all sorts of amazing things mentally and physically so by all accounts mom should still be a ‘vital’ person, and she would be, probably, if Alzheimer’s hadn’t stepped in to rob her of her ‘essence’.

Miss Cathy’s’ self-assurance has been replaced by a halting, questioning fragility and a begrudging reliance on me to help her with things that used to be second nature for her.

Life is becoming harder for her to navigate day to day and it’s becoming increasingly difficult for her to trust herself to either ‘remember’ or ‘to do’ the things she wants as Alzheimer’s continues to take a toll on her confidence and independence.

She still struggles to make peace with her diagnosis but as her condition becomes less subtle and more overt even she can’t deny that something is wrong.

With the help of her new neurologist she seems more accepting and she just might be ready to take some steps away from denial toward participating in her own care and maintenance, maybe….hopefully.

That is my birthday wish for her anyway.

She was touched by the gift and the gesture. She gave me a kiss and a hug then I was off to catch a train for New York where I’ve been teaching a summer program at LIM College this month and part of next.

I’m gone for most of the week and back at the weekend, my brother staying with mom while I’m away.

I can’t believe that another year has passed so quickly. The first week of August marks my third year as a caregiver.

So much has changed and there is still so much ahead that is unknown.

But, celebrating the day of her birth (however briefly) I could see that she was happy and present for the gifts she received and that’s enough, more than enough….. for today anyway.

Happy Birthday: Pt l

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It’s Miss Cathy’s birthday tomorrow.

What do you get for the woman who’s likely to forget what you’ve given her?

To be fair, I bought mom a gold watch to replace one that had been stolen years ago and rather than save it till now I gave it to her back in the Spring (I figured at her age why wait to make her happy).

She cherishes it and takes every opportunity to let people know that it was a gift from me.

But I also think its fun to have something to give on your loved one’s actual ‘Birth’ day, even if it’s just a little trifle, its a reminder that they’re loved and special.

I wish there was a way to give back her mind (the way it was five or ten years ago) when she was sharp as a razor and still on top of her game.

Oh, she still has the ability to cut you down to size (I’ve been verbally decapitated a few times myself in the past three years….that’s all blood under the bridge for now) but the Alz has tempered her temperament.

Those of us who are lucky enough to be healthy and whole take simple things (such as remembering the date that we were born and our age) for granted. So I’m reminded everyday of my blessings being healthy in body and mind.

Sometimes though I have a moment when I’m stopped cold by the thought that maybe the researchers are wrong.

What if Alzheimer’s is genetic? Am I’m witnessing my own future? Will there soon be a day when I’m searching the air to try to remember the year I was born, much the way Miss Cathy has been lately?

I’ve never professed to have a great memory so it’s been of little concern to me through the years that is until I became a caregiver.

Now I bear witness to the slow determination of a loved one’s mind and memory on a daily basis.

So it’s only natural (I think) to wonder, “is my mental state early signs of dementia or just the by-products of the stress that is so much a part of my life nowadays?”

Water off a Duck’s Back: Pt. lll

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I was tired of debating the merits of therapy with Miss Cathy week in and week out.

After so much Sturm und Drang I realized it was her life and she could not examine it if she didn’t want to.

Some days she’d tell me that the sessions were no more than gossip, other times that the therapist was very smart and she’d learned a lot but inevitably she’d ask me, “How long do I have to keep going before I can stop?”

How she could even contemplate stopping when she’d only just started baffled and frustrated me, but, her questioning the process was insightful and it told me she wasn’t actively participating (meaning she probably wasn’t dealing with any of her core life issues) in her sessions (not in any meaningful way it seemed).

It was amazing to me how she could even try to quantify seventy-five years of neurosis and think that she should be ‘cured’ in less time than it takes to get a reservation at a four star Michelin rated restaurant in Manhattan….but, hey, I’m just saying (to you anyway).

To Miss Cathy I said, “You can cancel if you want but you’ll still have to pay for the session”.

“It’s up to you, what do you want to do?” I asked, reminding her that her appointment was in less than two hours,

“I’ll got then”, she said grudgingly, “but I’m not going back.”

Instead of listing all the reasons why she should continue with therapy I simply said, “Fine by me, do what you want, you always do.”

So, I took mom to her session and wrote in my journal as I waited for her.

Afterward her therapist brought me into the room to announce that she and Miss Cathy had come to an agreement.

Miss Cathy would commit to going to the Senior Center and become more engaged in her life and if she did this with some regularity then she wouldn’t have to come to therapy as often.

I was skeptical but gave my right to an opinion when I announced earlier that I didn’t care anymore. I was alittle surprised and put off (read: pissed off) that I was asked to agree to “sitting down for at least one meal a week with Miss Cathy”.

How the hell did I get roped into this? Whatever….. I shrugged but agreed.

Time will tell if she holds up her end of the bargain or if she simply reverts back to her old habits and all her promises evaporate like water off a duck’s back.

Water off a duck’s Back: Pt. ll

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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

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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

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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

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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

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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.