Tag Archives: dementia

A Shadoobie by any other name: Pt. ll

Posted in August by

WARNING: READER DISCRECTION ADVISED

So, there I was, on my hands and knees scrubbing feces out of the beige colored carpet hoping there’d be no tell tale sign of Miss Cathy’s ‘accident’ after I’d finished laboring over the stain, wondering all the while, “How the hell did I get here?”

I’d gotten used to being “Hazel the housemaid” and “Nurse Ratched with the meds” but this….this was something I had no pop culture reference for.

I had to reach back to the seventeenth century and Lady Macbeth’s, “Out, Damn’d spot!” to find something (somewhat) apropos.

Hey, I accept that ‘things happen’ being a caregiver for someone with Alzheimer’s (and lord knows I’ve gotten used to quite a lot ‘happening’ since I’ve been here) but I couldn’t get over the ‘matter of fact’ way that mom talked about what happened.

I don’t know if I was more shocked by what she did or how blasé she was about it all.

Is alittle remorse, regret or (I don’t know) just some plain ole embarrassment a lot to ask (or expect) when something like this happens?

I pondered all this earlier as I gingerly watched my step walking down the hallway to get out of the front door so that I could go to the store for cleaning supplies.

After perusing the shelves I decided on the “Pet stain and odor remover for carpet”, boasting that it “cleans and freshens even the toughest pet stains”.

I figured if it was ‘guaranteed’ to make Fido’s mess vanish then cleaning up after Miss Cathy’s should be a breeze.

Still, I couldn’t get over mom’s straightforward delivery when she told me what had soiled the carpet.

“Oh, that…that’s shit”.

Since she was so calm and she seemed to have no shame or register any embarrassment in her voice I thought there was no reason for me to act surprised (or heaven forbid ‘shame’ her) so I took my cue from her as I continued my query in the best “everyday” tone I could muster.

“Um, how did that happen?”

She told me that she’d eaten too much of the watermelon I’d bought for her and she ‘felt something’ as she was walking down the hall. And that was that, no further explanation of why she didn’t make it to her bathroom.

The only real emotion she registered was being a bit perturbed (with herself I assume) when I told her that she’d made matters worse when she attempted to clean up the mess, that she’d only been successful in leaving a stain (which I was not sure I could remove once she told me she used Windex as a cleaner) and that she’d missed quite a few spots, and that there were still remnants of matter dotted down the hallway.

Thankfully, she passed the ‘smell test’ as I neared her person and I was somewhat relieved to know that she had the presence of mind to put the offending panties in the washing machine after rinsing them out.

So, back down on my hands and knees; spraying, waiting, gently dabbing, repeating the process (time and again), and amazed (and relieved) that the “odor and stain remover” carpet cleaner made good on its promise, I couldn’t help but wonder,” Did she think this was okay?” and “When did taking a shadoobie on the carpet become acceptable?”

I could only hope that this was the exception and not the new normal, but if it was a glimpse into the future, unlike Miss Cathy’s memory or cognitive issues (that I have no control over) then at least (in all matters poo related) I was armed with a super sized can to spray away stains from my memory.

Calculating Cutlery: Pt l

Posted in July by

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.

good-day

bad-day

Happy Birthday: Pt. ll

Posted in July by

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

Posted in July by

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

Posted in July by

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. l

Posted in July by

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

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.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.

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.Vc

Posted in June by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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