Another day, another Doctor: Pt. l


Today was a day not unlike a lot of other days around here; get up, strategically try to time my entrance into the kitchen so that I can make my morning coffee (in peace and quiet before the deluge of chatter dominate my day), meet Miss Cathy in the living room to take her daily blood stik (since she has type 2 diabetes) turn on the TV for her (only if it’s a bad day and she’s forgotten how to operate the remote), then back into the kitchen to start breakfast.

But looking at the calendar on the wall across from the stove I could see that it was also a ‘Doctor Day’ so preparations (in addition to her daily routine) had to be made to get Miss Cathy out of the door and to her respective physician on time.

I would have to make sure that she was bathed, dressed and be prepared to answer whatever questions she’d have (usually the same ones she’d already asked but obviously forgotten) depending on who we were seeing and why we were going.

After weeks and months of specialist after specialist we were off to see her “Geriatrician” (think ‘Pediatrician’ for old people) who just ‘happens’ to be her primary care physician, Dr G.

It makes sense; she’s been going to Dr G for more than thirty years so if anybody knows her inside and out (literally and figuratively) it would be him.

I asked Dr G to take on the additional role so there’d be one doctor (and someone she’s comfortable with and can trust) that is sort of the ‘ring master’ of the circus of care.

In addition to being a ‘Doctor Day’ it was(unfortunately) a ‘running late’ day, too. For some reason mom was still in her room watching TV when we should have been getting into the car.

It still amazes me that for someone who asks what day and time her appointments are over and over, when the day arrives it’s a 50/50 chance whether or not she’ll be ready on time, running late, forget all together or sitting on the sofa, purse and cane in hand ready to go hours before we have to leave….guess with all those variables I should use different odds, oh well…back to getting Miss Cathy outta her room.

TyTip: When possible, tell your loved one about appointments outside of the home a day or two (at most) in advance. The less lead time they have, the less time they will have to fret, worry and/or obsess over the upcoming event or appointment AND the less time they will have to ask you question after question (usually the same ones over and over) regarding said event or appointment.

Remember, changes in their routine (no matter how benign we may think) can be very stressful-even scary to a loved one with Alzheimer’s.

A Shadoobie by any other name: Pt. ll


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.

A #Shadoobie by any other name: Pt. l


WARNING: READER DISCRECTION ADVISED

A friend called me the other day while I was in my room so I went out to the balcony to chat.

I call the outdoor space my ‘summer living room’, a place where I can feel free to talk uncensored and without being heard (except, of course, for the neighbors if I talk too loudly).

It’s not that I have anything to hide or secrets to guard, it’s just that being a caregiver there is very little privacy, so I try to carve out what little space I can.

As I walked through the apartment I happened to look down and noticed that Miss Cathy had spilled something on the caret in the hallway right in front of the kitchen doorway.

Earlier I’d heard her in the kitchen rustling around with the kitchen garbage (something I’ve told her time and time again I would take care of because she’s famous for leaving the garbage bags ‘next’ to the can and never taking them out to the dumpster) so I thought it might be coffee grounds or maybe chocolate ice cream that had spilled.

But, I continued on, chatting away, I thought little of it, other than to make a mental note to go buy some caret cleaner later and joked to my friend, “I don’t know what that is, it could be poo for all I know” then I proceeded to the balcony where I spent the next hour or so talking about everything from the Project Runway season premier on Lifetime (television for women-and gay men) to the Anthony Weiner scandal (television for women-and gay men).

After clicking off my conversation I was ready to tackle the stain, which now looked as if an attempt had been made to clean it up but the result was less than successful.

Fearing permanent damage (because it looked like she really rubbed it in instead of lifting the stain out) I went to mom’s room in search of some answers.

She was already tucked in bed for the afternoon.

“I’m going to the store to get some carpet cleaner”, I said. “So I need to know what you spilled.”

“Oh, that”, she answered, as matter of fact as if I’d just asked the time.

“That’s shit.”

Calculating Cutlery: Pt. lll


I’ve always thought that if Miss Cathy won’t do the things recommended (by doctors, specialists, social workers and mental-health care professionals) to keep her mentally challenged (things like crosswords puzzles, reading, exercising, socializing, or knitting) then she could at least be conscientious of keeping her surroundings organized and clean.

So, putting away the silverware and keeping the drawer organized seemed like a no-brainer to me when it came to keeping her brain stimulated.

One day I asked Miss Cathy to join me in the kitchen for a little tete a tete and quickly realized after watching her struggle that there was more at play then simple indifference to order.

She stood there trying her best to correctly place a spoon in it’s proper place in the drawer and to stand on her feet, laboring the entire time to do both.

After five minutes I simply couldn’t take it anymore and put an end to the task.

The fact that she has so much trouble standing is an unfortunate but direct result of her lack of exercise (the blame for which I lay at the feet she can’t support herself up on for very long) but that’s her choice and I learned long ago to pick my battles (after losing that one).

But her inability to distinguish what goes where and how to get it there in the cutlery drawer is something that she has little to no control over.

Miss Cathy’s brain isn’t firing off the neurons or whatever it is that fuels her ability to problem solve, and as we discovered after consulting several doctors, her brain is also playing tricks with her eyes.

And when she’s having one of those bad days it can affect everything from forgetting how to perform simple tasks, mood swings, to asking me the same question over and over again.

So, now that I know all of this I just remind her from time to time to be conscious of what she’s doing (whether it’s replacing the cutlery, her posture, hygiene or any number of little things) and she either responds or not.

Alzheimer’s is not only about keeping your loved one safe; it’s about learning to respect their limits and boundaries.

And it’s been important to learn that her mood swings, depression and confusion come and go, the same as her ability to put away the silverware.
I always thought that if Miss Cathy could stay ‘aware’ of the little things then one day the big things won’t be as daunting…or so I hope anyway.

As for the cutlery drawer, it’s become more than a place to retrieve eating utensils; it’s a Rochard test, a crystal ball, tea leaves at the bottom of an empty cup whose chaos or order is a glimmer into the mind of Miss Cathy.

Calculating Cutlery: Pt. ll


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’.

Calculating Cutlery: Pt l


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 l


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


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


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.